Low Dose Naltrexone For Chronic Fatigue Syndrome & Lyme Disease

This post aims to give you a little bit of background on Low Dose Naltrexone (LDN) along with some examples of research on the drug. It also gives details on my personal experience of taking it (which I have been on since 2015), to help with my Chronic Fatigue Syndrome (CFS) as well as chronic Lyme disease.

What is Low Dose Naltrexone?

Low Dose Naltrexone (LDN) is the name used for the drug Naltrexone, which was originally approved for use by the Federal Drug Agency (FDA) in 1984. The original dose of 50mg was used with the purpose of helping addicts of heroin and other opiate drugs.

Naltrexone blocks opioid receptors and blocks the reception of the opioid hormones that our brain and adrenal glands produce, called Beta-endorphin and metenkephalin. In layman’s terms what this means is that endorphin receptors are blocked, tricking the brain into producing more endorphins, which are the body’s natural form of pain killer; this in term stimulates the immune system. Many of the body’s tissues have receptors for these endorphins and enkephalis – virtually every cell of the body’s immune system!

In 1985 a physician called Bernard Bihari (MD) discovered that Naltrexone when used in much smaller doses (approx. 3mg* once a day) could have a positive effect on the body’s immune system, hence the name ‘low dose’ Naltrexone. He found that the medication worked best when taken at bedtime, noting that it was able to enhance a patient’s response to infection by HIV, the virus that causes AIDS.

Later in 1990 Dr Bihari found that other patients in his practice also benefited from using a low dose of naltrexone. Patients with cancers such as lymphoma or pancreatic cancer benefited from the drug – in some cases the results were (positively) dramatic. He also found that some people with Auto-immune diseases (such as Lupus) often showed prompt control of disease activity while taking LDN. *The optimal adult dosage for LDN has been found to be 4.5mg

What health issues can be helped by LDN?

Since these discoveries were made, there have been many research studies carried on the use of LDN, and alongside Dr Bernard Bihari (MD), there are many other physicians and researchers who have noted beneficial effects of LDN on issues such as ;-

  • Cancers such as bladder, breast, carcinoid, colon and rectal, liver, glioblastoma, lung, lymphocytic leukaemia (chronic), Lymphoma (Hodgkin’s and non-Hodgkin’s) and malignant melanoma, Multiple myeloma, neuroblastoma, ovarian, pancreatic, prostrate (untreated), renal cell carcinoma, throat and uterine cancer.
  • Auto-immune disorders such as ALS (Lou Gehrig’s disease), Alzheimer’s, autism spectrum disorders, hereditary spastic paraparesis, Multiple Sclerosis (MS), Parkinson’s disease, post – polio syndrome, Post Traumatic Stress Disorder (PTSD), Primal Lateral Sclerosis (PLS), Progressive Supranuclear Palsy, transverse Myelitis
  • Other Auto-immune issues such as Ankylosing Spondylitis, Bechet’s Disease, Celiac Disease, Chronic Fatigue Syndrome, CREST syndrome, Crohn’s Disease, Dermatomyositis, Dystonia, Endometriosis, Fibromyalgia, Hashimoto’s Thyroiditis, Irritable Bowel Syndrome (IBS), Myasthenia Gravis (MG), Nephrotic Syndrome, Pemphigoid, Primary Biliary Cirrhosis, Psoriasis, Rheumatoid Arthritis, Sarcoidosis, Scleroderma, Sjogren’s Syndrome, Stiff Person Syndrome, Systemic Lupus (SLE), Ulcerative Colitis and Wegener’s Granulomatosis.

When people read this extensive list of disorders that LDN can help, they may at first think that
LDN is some form of miracle drug! However there is simple explanation and it’s because all of these disorders all share one main thing – the immune system plays a central role!

Research

Doctor Ginerva Liptan is a woman who has written many books and blog articles on Fibromyalgia (FM) and the uses of LDN for its treatment. Dr Liptan is a specialist in FM and has had over 20 years of research, not to mention personal experience. She developed an interest in the subject after she became struck down with the disease during medical school. In one of her blog posts (on the medical website health rising), Dr Liptan stats that a Stanford University study showed a 30% reduction in pain in 2/3’rds of FM patients. The study found that 2/3rd’s of patients benefited significantly, with most receiving a 30 -40% reduction in pain (although some experienced a 60% reduction). However Dr Liptan also notes that the best results occurred when her patients combined the use of LDN with therapy to reduce muscle tightness.

Cree BA, et al., (2010) carried out a pilot trial looking at the effect of low dose naltrexone on the quality of life of Multiple Sclerosis patients, at the University of California. The study, involving 80 people, looked at the effects of LDN on quality of life of patients with Multiple Sclerosis. Significant improvements were found in areas such as mental health, pain and self-reported cognitive function. However no impact was observed on symptoms such as fatigue, bowel and bladder control, visual function or sexual satisfaction. The only adverse effects of taking LDN were patients reporting vivid dreaming during the first week of treatment. (Annals of Neurology 2010;68(2):145-150. Link here).

For CFS patients, there was the suggestion of LDN being combined with another drug (Trazodone – an antidepressant) to help with symptoms. Unfortunately however, a study was never commissioned but I am sharing this link from the Health Rising Blog as the comments underneath the post are quite helpful. There is a combination of current patients using LDN- noting their experiences as well as information that they have come across about the drug.

I would also suggest taking a look at the ‘Treating Chronic Fatigue Syndrome’ article on the Health rising blog too. It not only discusses the use of LDN for CFS but at the bottom of the page, it has a TON of links that may be helpful (such as other LDN websites, organisations and even social media forums where you can talk to other people who are already taking LDN).

Younger J, et al., (2014) carried out research in to the use of LDN as a novel anti-inflammatory treatment for chronic pain. The results suggest that LDN may be a successful form of treatment for chronic pain but more research with larger patient participation is needed.

Kariv R, et al., (2006) carried out a pilot study; Low Dose Naltrexone for the treatment of Irritable Bowel Syndrome (IBS). The study assessed 42 IBS patients reporting on degrees of abdominal pain, stool urgency/ consistency and frequency. After 4 weeks of LDN (0.5mg) per day patients showed an overall relief in symptoms and noted a number of pain free days. Using global assessment, the results demonstrated a 76% improvement.

Here is an article post titled ‘Top 22 scientific health benefits of low dose naltrexone’…. Im including it as part of the research section as it does refer to a few decent studies. However I do think the post is a tad biased as some of the studies (e.g. Those carried out with MS patients) have recently been re-tested only to find that there was no improvement in patients pain or other symptoms.

Overall there are TONs of research studies on LDN but many of them are too small or based on short term use. There are no studies looking at the long term implications of using LDN in any condition. There are also lot of contradictions – one study will show patients with improvements, whereas others will say there was no difference!

However I wouldn’t let that stop you from trying LDN if you are able to get a prescription. I will give more details below on my personal experience of using LDN as well as a few examples from other people I know who are also taking it.

My experience

I started taking LDN in December 2015 and although I had a rocky start, I soon began to notice the advantages of this little wonder drug! To begin with I foolishly began taking the medication on Christmas eve – which was a BIG mistake!!! I felt incredibly wired and couldn’t sleep at all – making me feel dreadful the next day, even though I had started on 0.5ml of the medication. I did sleep better the next night but had terrible nightmares and woke up a number of times sweating with my heartbeat racing! After a few days I began sleeping a lot better but the nightmares and night sweats continued for a few days as well as fluctuating each time I increased my dose (by 0.5ml).

Eventually after about two weeks I noticed I was sleeping much better. Before LDN I would spend hours trying to fall asleep, then when I did nod off, I would wake up about 4-5 times a night. Then I would wake super early and not be able to get back to sleep. I would wake feeling like my head was thick with fog, I found it hard to focus/ concentrate and I felt generally dreadful. I would spend all day feeling like I wanted to go back to sleep!

Since being on LDN I have found I generally sleep better – however I do find that if I don’t stick to a decent sleep hygiene**, my sleep does suffer. Overall I find that I sleep without waking so many times in the night and I find I take less time to fall asleep. Although getting better sleep might not seem like much – personally for me, my sleep is crucial to how I feel the next day. When I sleep better I tend not to have such a painful neck, I don’t feel as dopey (sleepy) and I feel much more able to manage my day and symptoms.

On a day where I have slept dreadful, I tend to find I will hurt myself more (accidently tripping over, walking into door handles, cutting myself on things); I will usually drop more things (which is how I have broken so many glasses!!), forgetting things I am in the middle of doing, such as the sink filling up or forgetting to shut the back door (after letting out the dog). I find my neck pain unbearable, showering and getting dressed takes much longer (than it already does) and I feel like I am one straw away from the camel’s back from being broken!! These are the days I tend to cry because I feel so frustrated.

**Sleep hygiene is basically following various habits or practices which aim to encourage the body to sleep better at night. It can involve going to bed at the same time each night, allowing your body time to wind down naturally so avoiding large meals an hour before sleep, not using blue light technology an hour before sleep, having your room at an optimal temperature, using a black out blind and for some people, using ear plugs.

I personally believe that using LDN in conjunction with other treatments can give the best results – Like Dr Liptan found that MS patients had the best results when using it with muscle therapy.

Since I began LDN I have talked to many other people either thinking about trying it, or already taking it and most of the people I have come across agree that it has had some kind of benefit. These benefits have included better sleep, better pain threshold (being able to tolerate pain better), a decrease in brain fog, overall improvement in all symptoms and improved immune system (get less colds, infections).

Where to get LDN?

Although Naltrexone has been FDA approved (at 50mg), the dosage of 3mg-4.5mg has not yet been submitted for approval as there is no current long term research for the drug. One of the reasons for this could be due to the fact that studies can cost many millions of pounds.

In May 2006, Professor Jill Smith of the Pennsylvania State University College of Medicine carried out an open-label trial that tested the use of LDN in Crohn’s Disease. As a result, the National Institute of Health granted her $500,000 to continue the study on a larger scale and placebo controlled scientific trials of LDN in Crohn’s Disease.

In the UK LDN is unlicensed (‘low dosages’ of 3-5mg) and therefore can be tricky to get hold of. In some forums (health forms for Lyme / CFS) I have come across many people who buy LDN from abroad. The issues with this are (1) you have no guarantee that what you are buying is safe and (2) they usually come in capsule form, meaning you need to open it up and work out the correct dosage – this would be quite tricky if you are trying to get 0.5mg!

As naltrexone IS a licensed drug in the UK (full dosage of 50mg), it’s possible that it can be prescribed for a condition other than that for which it was licensed, if the doctor feels it’s an appropriate treatment. However, when a doctor prescribes a drug ‘off-license’ (for treatment of an illness that the drug has not been approved for) they are directly responsible! This means that it’s highly unlikely that your GP will be willing to prescribe it.

There are some specialists that WILL prescribe LDN, such as those treating patients with MS and Fibromyalgia. Unfortunately it usually depends on the Doctor. If they are quite holistic in their approach and are well versed in the current climate for LDN you may be on to a winner. The best approach to take is to print off as much research as possible and take it with you to an appointment with a specialist in your area. It might be worth joining a forum for your health issue and finding out what other people have experienced. If someone in your local town has been prescribed the drug, you may have a higher chance of convincing the specialist.

Private prescription

I get my prescription from my private specialist who I see for Chronic Fatigue Syndrome/ Myalgic Encephalopathy. I had been seeing this doctor for almost 2 years when LDN was suggested as a form of treatment. I had been doing other things to help manage my symptoms such as changing my diet and setting a better sleep hygiene routine – in order to reduce inflammation/ reset circadian rhythm. My doctor writes me a prescription and I then send this on to a prescription delivery service where I then pay for the item (£20 per bottle) and they then post it out to me. The company that I use (who deliver the LDN directly to me) is Dickson Chemist who are based in Scotland.

Alternatively you could try a service like this one at Prescribe4me. It offers consultations with specialists who deal with prescribing LDN. You have to fill in a questionnaire which is then passed to a doctor who calls you back. There is no guarantee that the doctor will prescribe LDN for you – it will depend on your illness / other issues and other health circumstances. This service costs £30 (to speak with a doctor and £14 for the prescription and then the cost of purchasing the prescription). I don’t have any experience with it, so I don’t know how good/bad it might be.

Types of LDN

LDN comes in four types of medication, they are pills (capsules or tablets), Liquid, cream and sublingual drops. I have only ever used the liquid, which comes in a bottle and I draw it out using a syringe.

The form you take will all depend on your needs. Sublingual drops are helpful for those who struggle with absorption, whereas LDN cream is often used by children who don’t tolerate additives (which are often found in the liquid form). If you are building up your dose and need to do it very slowly then liquid LDN would be the easiest form to take.

Other

It is recommended that LDN is taken at night and the reason for this relates to the diurnal nature of endorphin secretion. Dr Bihari’s explanation is this …

“The reason the hour is important is that 90% of the endorphins are made in the middle of the night, between 2 and 4 in the morning. If a small dose of naltrexone is taken
in the late evening, generally at bedtime, generally endorphin production is boosted as much as threefold, 300%. The naltrexone itself is gone in about 3 hours, but the
endorphins remain elevated all the next day. So the naltrexone doesn’t significantly block the endorphins but does cause them to rise.”

If you are still unsure about LDN as a form of treatment for you then take a look at the following documentary. It’s a Norwegian documentary a (with English subtitles) and follows two presenters who go to find out what LDN is all about and it’s so called ‘super drug’ title.

Norwegian Documentary LDN – English Subtitles

Feedback

Thank you for taking the time to read this blog post – I hope it has been helpful to you. If you have any further information to add or want to tell people about your experience using this drug then please leave a comment below.

Links

MS Trust https://www.mstrust.org.uk/a-z/low-dose-naltrexone-ldn

Low Dose Naltrexone – http://www.lowdosenaltrexone.org

LDN Database – http://www.ldndatabase.com/

Journals/ Articles
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

https://www.ncbi.nlm.nih.gov/pubmed/17080248

http://www.lowdosenaltrexone.org/ldn_trials.htm

https://www.ldnresearchtrust.org/ldn-clinical-trials

http://www.bmj.com/rapid-response/2011/11/02/cfsme-patients-response-low-dose-naltrexone

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Hyperbaric Oxygen Therapy for ME/ CFS & Lyme

Hyperbaric Oxygen Therapy – What is it?

This post about hyperbaric oxygen therapy, sometimes called HBOT or HBO, aims to give you some basic information on what it is, how it works and where you can go for treatment. I also give you some information on my personal experience with it. I am using HBOT to help manage my Myalgic Encepalopathy (ME) Chronic Fatigue Syndrome, Lyme disease and all the symptoms they bring!

Hyperbaric Oxygen Therapy (or H-BOT) is simply “Breathing pure oxygen at higher than atmospheric pressure in an enclosed chamber” (The Hyperbaric Oxygen Treatment Trust). A patient sits (upright) in a specialised chamber, (sometimes referred to as a ‘tank’) for 60 – 90 minutes, wearing an oxygen mask (like a diving mask) while the chamber around them is pressurised to a certain atmosphere (or depth), usually 16 or 32 feet. This is done by sealing the chamber (air tight) and then the atmosphere being compressed by releasing the air form the chamber. The mask that a patient wears is attached to two pipes (one on the left, one on the right). Pure oxygen is pumped through the pipe on the right which the patient breaths in and the left pipe takes away air that has been breathed out.

In most centres where HBOT is used, the sessions are referred to as ‘dives’ (as Oxygen chambers are usually used by divers and the masks/ equipment used is usually from the diving industry). The chambers usually look a little bit like metal domes from the outside and will have one or more circular windows just like you get on the side of ships. The windows are usually there so that staff can keep an eye on the patients.

The chamber that I use has an intercom system so that the staff can talk to the patients (or patients call the attention of the staff while in the chamber). It also allows the radio to be played so that patients an listen to music while they are having their dive.

How It Works / Research

The pressure in the chamber forces oxygen into the body saturating haemoglobin, flooding cells, body fluids and tissues. Even if a person has blocked or reduced blood flow, it can still help to restore function to damaged cells and organs.

There are lots of different uses for HBOT from carbon monoxide poisoning to physical injuries. For example research by Staples and Clement in Sports Medicine (1996: 22 (4)) 219-227) suggests that when HBOT was used in conjunction with physiotherapy, recovery time from injury was reduced by 70%. This includes treatment for joint, muscle, ligament and tendon injuries and studied injuries in footballers in Scotland. Research by Bekheit et al (BMJ Open Gastro 2016;3: e000082. doi:10.1136/ bmjgast-2016-000082) showed that HBOT simulated colonic stem cells and induced mucosal healing in patients with refractory ulcerative colitis showed clinical improvement by the 40th cycle of HBOT, with a decrease in bowel movements a day as well as an improvement in CD44 markers (a marker for stem cell activity).

In the Journal of international Medical Research, Yildiz et al (2004; 32: 263 – 267) carried out research to find out the impact of Hyperbaric Oxygen (HBO) in Fibromyalgia patients. The paper was titled “A New Treatment Modality for Fibromyalgia Syndrome: Hyperbaric Oxygen Therapy”. Their findings suggested that there was a significant reduction in the tender points as well as a significant increase in pain thresholds in the HBO group after the first 15 sessions.

Research by Elke Van Hoof, et al, (2011; 37-49) Journal of Chronic Fatigue Syndrome (Volume 11, issue ) found that there was an improvement in CFS patients who undertook hyperbaric oxygen therapy. Their paper titled “Hyperbaric Therapy in Chronic Fatigue Syndrome” found that there was an improvement in fatigue (fatigue decreased), an increase in levels of activity as well as an improvement in reaction time. The paper does however state that although trends were found more data is needed in order to make firm conclusions.

The Multiple sclerosis (MS) Therapy Group says “Hyper-baric Oxygen Therapy (HBO) involves breathing pure oxygen, through a mask or mouthpiece, under an increased level of pressure. Under pressure the body is able to absorb more oxygen and the whole body is saturated, both tissue and blood, with oxygen.

It is believed that the oxygen disperses any fat globules in the blood, thus reducing the risk of damage to the nerves and myelin sheaths. Pressure is the crucial part of delivering oxygen to the body in sufficient quantities. HBO is not a cure for MS but it can help limit damage to the nervous system and promote healing. Many people find it helps relieve symptoms like fatigue, blurred vision and bladder problems”.

Overall there is mixed information and viewpoints as to whether HBOT actually helps. Most research out there suggests it can help to speed up recovery, which is one of the reasons many sports people use it alongside other treatments (e.g physiotherapy) as it means they can recover quicker and get back to playing sport! But with regards to MS, CFS and ME there is less supporting evidence that it can help with recovery. In fact some researcher suggests that it doesn’t have any impact at all (Bennett and Heard, 2004 – based on a meta-analysis study), whereas other researchers suggest that it does (Perrins and James, UHM 2002, Vol. 29 – No 4, Mini Forum on MS and HBOT).

However, PLEASE don’t let the negative comments put you off from trying it – I will explain why below, in the details about my own experience.

My Experience

Using HBOT for ME/CFS and Lyme Disease

I started HBOT in May 2017, starting with two weeks of saturation at the Milton Keynes Multiple Sclerosis Therapy Centre. I wanted to see if it would be any help to managing my symptoms from ME/CFS and Lyme disease. Saturation is where you have daily or frequent treatment which ‘saturates’ or floods your body with oxygen. For ‘other health conditions’ (other than MS) saturation is usually two weeks of treatment, going to one session per day. For MS the saturation period is usually four weeks.

The first week was to allow me to settle into the treatment and see how I got on with it. Usually when you first go for HBOT you will start on the shallowest ‘dive’ (the lower atmosphere), which was 16 feet. This is because some people can experience ear problems – think of when you go on an aeroplane and the pressure changes as it takes off. On my first dive I felt really queasy and got really hot (but I was wrapped up in lots of clothing as I am usually cold!). Once I had removed a few layers of clothing (and the Staff turned on the electric fan inside the chamber) I was fine (and the other people in the chamber were lovely to me!). After that I wore thinner clothing in the chamber as the temperature gets quite warm as the pressure drops. The second week I went to 32 feet and had no issues. After the initial saturation I continued going just once a week. The reason for this is because I live so far from the centre. Ideally the centre suggests you go twice a week (but you can go more) to maintain optimal oxygen levels.

When I did saturation I started to notice some improvement in the first week towards the end of the week. I felt less pain in my neck (I get horrendous neck pain) and I felt like my head was less fuggy (I get a combination of a foggy / fuzzy head, but its more commonly known as brain fog; it feels like when you first wake up and feel half asleep). I also slept in the day time too – which is something I haven’t done for years as it stops me from sleeping at night (but I found I was ok sleeping at night too). I also felt less sleepy/ drowsy after a session, feeling more like I had properly woken up (which is not something I usually feel!).

After saturation, I noticed the difference when I stopped going every day. I found that I would start to lag and feel more tired the longer it had been since my last session. I also noticed a massive difference when I was unable to go for a few weeks. I recently stopped going as a family member was seriously ill. Then the centre closed down for Christmas, so I haven’t been for about 2 months and I am REALLY feeling the difference. I cannot wait to get back to it.

Why You Should Consider n MS HBOT centre?

If you are considering trying HBOT then I highly recommend going to a local MS ran HBOT centre as they are FULL of helpful people as well as people who will be battling health issues just like you. When I first went to the MS centre for HBOT I was amazed at how many people I came across who (although had a range of health issues) they all seemed to ‘get’ me. They didn’t think following a special diet was weird, or doing various natural therapies made me a ‘hippie’. I was suddenly surrounded by people who had heard about ME and Lyme disease. I was talking to people about various techniques and books that I was reading (e.g. Dr Joe Dispenza) and they knew what I was talking about!!! It was BRILLIANT!!!

Not only did these people understand what it was like to have to constantly manage my health, they also had tons of their own experience of dealing with a long term health condition. They understood the struggle; they were happy to discuss the treatments that they had tried or knew about. It was like a big melting pot of knowledge, experience and information.

I also have to say that the staff are amazing too. They were reassuring when I first went for treatment and they made sure that I understood that HBOT doesn’t work for everyone. They explained that some people just don’t notice a big enough change so don’t continue with treatment, whereas others notice a big difference so continue with maintenance sessions.

If you are still unsure as to whether it is for you then let me tell you that I have come across people who suffer from the following issues and have found it beneficial – Multiple Sclerosis, CFS, Lyme Disease, Heart issues, problems with eye nerve damage and people who have had physical injury (such as falling of a motorbike at top speed on a racetrack!!).

I recommend just going along to an MS HBOT centre and spend half an hour just talking to the staff and the people who are using the service. Nothing is more helpful that talking to people who have actually tired something. I should also point out that MS HBOT centre in Milton Keynes is run by volunteers, many whom are suffering with MS themselves.

Where Can I Go For Treatment?

There are many Multiple Sclerosis (MS) ran HBOT centres. They usually allow non-MS patients to use their service. As well as oxygen therapy they sometimes offer other services such as massage, reflexology and other helpful natural therapies. There is a charge for the treatment. The Centre that I go to charges £20 for 2 HBOT sessions (if you go for just one session, you still pay £20). There are charges for extra sessions and the other therapies (prices correct as of Jan 2018).
For more details on the Milton Keynes MS HBOT centre, take a look at their website (or google search Milton Keyenes Multiple Sclerosis HBOT Centre).

To find your nearest centre you can have a look on the Hyperbaric Oxygen Therapy Organisation website. This trust was founded in 2009 by a man called Peter McCann. He started the trust after he had used HBOT himself following a serious illness, (he states that HBOT saved his life). The trust is said to “provide help and information to the public and healthcare professionals on hyperbaric oxygen treatment and seeks to promote further research into the benefits of hyperbaric oxygen therapy”.

There are privately run HBOT centres but they can be much for expensive. One of the centres that I looked into was charging £45 for a 45 minute session. If you do an internet search for Hyperbaric Oxygen therapy you will find a list of centres that are local to you.

You CAN buy a home tank system that you use at home. They are usually portable although they are bulky and not the same as a tank at a centre. The home ones usually have you lying down. They are also incredibly expensive. I looked into one and it was about £8,000! Don’t forget that you would also need to buy replacement oxygen too – this would be an on-going cost
For more details on home use HBOT have a look at Oxy Health’s website.

Feedback

Thank you for taking your time to read this post – I hope you found it helpful. If you have anything to add or any questions then please leave a comment below. I appreciate you taking the time to feedback your thoughts.

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You Are The Placebo – Book Review

You are the Placebo –Dr Joe Dispenza

You Are The Placebo – By Dr Joe Dispenza

Book Review

This is a review of the book ‘You are the placebo’ by Dr Joe Dispenza. I will talk you through the various sections and chapters, giving you an idea of the types of subjects that are discussed and will finish off with some information on how I came across it and how it’s helped me.
I would like to point out here that this book is incredibly detailed and very heavy with science including some quantum physics. The detail it goes into is exceptional, but it can also make hard reading, especially if you have a chronic health condition that impacts on your ability to focus and read. I personally have read the book twice as it took me so long to read, that when I finished it I had to read it again to get my head around it all! (I am starting it a third time as it still hasn’t sunk in!) Don’t get me wrong, it’s an amazing book and loved reading it, but there is SO much information that it can really be confusing if you are not feeling 100% and are trying to read!

As the book is so detailed and complex I have tried to keep the review as simple as possible and have avoided going into any science stuff! If the review leaves you feeling like it’s too complex then I would suggest not giving not giving the book a read for now as the book is so heavy with details!

If you are unsure then I recommend going onto amazon and downloading a sample of the book so that you can have a read of the first chapter or so and see what you think. You don’t have to have a kindle to read books from the amazon site; you can download the kindle app (onto your tablet, phone or computer) and read it via the app. The sample doesn’t cost – it’s normally a chapter or two and it’s enough to give you an idea of whether you like the book or not.
The book is split into two sections; Part one is ‘Information’ and part two is ‘Transformation’. The information part teaches you all about how the placebo effect works, a bit of history about the subject, how the brain can be tricked into thinking something that’s not actual, how attitudes, beliefs and perceptions can impact on how we behave and see things; it discusses quantum physics and how it relates to the mind. It tells you three success stories and gives you the base information of how to prepare for the transformation.

The transformation part explains about mediation, how it works, how to do it and what happens with your brain when you do meditation. It also has a chapter that walks you through an actual mediation – you can download a copy of this audio meditation from Dr Joe Dispenza’s website (It does cost but it’s not very expensive) or you can record yourself (or someone else) reading the script of the meditation and use that to listen to instead.

It has a total of twelve chapters and at the end there is information about the author and details for the studies and research that is cited/ referred to within the book.

Chapter By Chapter

Preface / Introduction
Before the book begins its chapters, in the preface you are told the story of how Dr Joe Dispenza came to be the man he is today. It explains how a serious car accident was what led him to energy work, meditation, science, and quantum physics and of course – writing this book. The introduction gives you an outline of what the book is about, how to use it and what the book ISN’T about!

Part One

(Chapters 1 – 10)
Chapter One; This chapter is one of the most exciting first chapters I have ever read in a book, because it’s full of information about placebo studies. It tells the story of a man who overdosed on placebo drugs – displaying all the symptoms of an overdose, except the tablets he took were merely sugar pills!!! It tells of heart surgery that never happened (where the patients STILL showed a 67% improvement!) and a story of a man incredibly sick from a voodoo curse was cured by the doctor preforming a ‘un-doing voodoo!’ All the research and studies that are mentioned in this book are cited at the end so you can source and read the full articles if you want to.

Chapter Two ; This chapter looks at the history of the placebo and the various types of ‘placebo’, such as hypnotism magnetism and the ‘Nocebo’. It tells of how research over the years has adapted original theories, how theories have changed, the meeting of Western and Eastern medicine and how neurobiology comes into play with the placebo.

Chapter Three is where things really start to get thick with science as it begins to look at the placebo effect in the brain. It talks about conditioning, how our brain works (and how thoughts are made), and the definition of thoughts and feelings.

Chapter Four looks at how the placebo effect impacts on the body; it also explains about DNA, genes and epigenetics and how stress and negative emotions affect the body and impact on DNA/ genes.

Chapter Five is about how thoughts change the brain and the body. It gives examples of how people have used the power of their mind (thinking, imagining) in order to physically achieve things that they desire – this is called mental rehearsal. It also touches on how the brain does this, what happens when this happens and how intention and emotions can turbo charge this process.

Chapter Six discusses suggestibility – when something is suggested to a person and whether they take it up. One of the most common types of suggestibility would be hypnosis. This chapter looks at suggestibility and how it works. It’s another very technical chapter and it looks at how acceptance, belief and surrender all impact on a person’s suggestibility. It also looks in great detail at the subconscious mind and how to access it.

Chapter Seven – This section looks at attitudes, beliefs and perceptions – where they come from and how they affect us. It also looks at how the environment and your perception can impact on them.

Chapter Eight is titled the quantum mind as is where your mind will likely be blown (if it hasn’t already!). It gives a little bit of background on the subject and where ‘reality’ and ideas about what it means originally came from and where it stands today. It looks at energy and how it is defined in quantum terms and how being ill (with disease) impacts on the type of energy that you receive.

Chapter Nine tells three stories of people who have put energy work (like what Dr Dispenza teaches) into practice and as a result have been able to completely change their life!

Chapter Ten
This is where it starts to give you the information you need in order to start the transformation. Everything you have read up until this point will have been giving you the knowledge and understanding to put into practice techniques that will enable you to be the placebo and change your health/ life.

Part Two

– (Chapters 11 – 12)

Chapter Eleven;This is the ‘transformation’ section, where you learn in depth about meditation, how to do it effectively, for how long, at what time and what happens to the body.

Chapter Twelve is changing beliefs and perceptions: Meditation. This is the final chapter of the book where you are talked though a guided meditation. If you have purchased the audio download or CD with this on, this is when you would listen to it. I personally didn’t read through the meditation – I listened to it as I found it easier.

Afterword; the book finishes with some final words from Dr Joe Dispenza wihc is then followed by an appendix which has the script for the guided meditation. It’s followed by end notes where you can find the referencing for all of the studies, research and information cited throughout the book.

My Personal Experience

I bought this book after it was recommended to me by my friend Emily who I originally met via a Facebook health group. I can honestly say that it’s one of the most fascinating and amazing books that I have ever read and I was blown away by it. I struggled a little with getting into it at times and understanding it, especially on days when I wasn’t feeling fully alert. I thought it was really well written and I loved how it was backed by lots of research – I think that’s the nerdy Psychologist within me (I did my BSc Honours in Psychology!!). I think the only down side with it is that some people might find it too ‘deep’ and a bit heavy to read. It does ease into the sciencey stuff and it gives lots of examples which help to give you a better understanding. The one down side that I found a tad annoying was that the audio Meditation that accompanies this book is paid for separately, meaning in order to follow the meditation you had to buy a copy. It does give the script so that you can record yourself reading it out, but really – who has time to do that?!. I also hate to say it, but I found Dr Joe Dispenza’s voice grated on me a bit and I found it hard to get into the meditation. It might not be a problem for some people but I often find if a person’s voice grates on me, I can’t listen to the audio. I have however found other guided meditation audios that I can listen to so It’s not such a big deal.

Rating

I was going to give this book 4 out of 5 but then I decided that nope, its definitely worth a whole 5 stars! You see I was going to deduct a star for the fact that some people might find it hard to read as it is so science based, but I have since discovered that you can buy the book on audio download and have it read to you! Yay! I wish I had known this before – I may even go and buy the audio book because I am in the process of trying to read this book a third time (as its still not quite sunk in!).

Other Useful Books

If you liked this book review, you may be interested in my other book reviews on similar books, such as You Can Heal Your Life by Louise Hay, The Magic by Rhonda Byrne, How To Heal Your Life When No One Else Can by Amy B. Scher.

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How to Heal Yourself When No One Else Can – Book Review

Book Review

This is a review of the book “how to heal yourself when no one else can” by Amy B. Scher. I will give a little bit of information on what the book talks about and a list of the sections and chapters so that you can get a good idea of whether this book is something that you would like to read. I will also give a little bit of information on how I got into reading this book and how it’s helped me so far.

Genre wise I would say it’s a self-help book, a healing book (with techniques that you can follow) and in some ways it would also fit into spiritual books as some of the practices that it talks about have a history within religion or a spiritual background.

How to Heal Yourself When No One Else Can – Amy B. Scher

How To Heal Yourself When No One Else Can by Amy B Scher

This book has a total of 271 pages and is split into three sections and eleven chapters. Section two (chapters 3-10) is further sub-divided into three parts.

Section One

‘An Introduction in to the Energy Body and Self-healing’ (Chapters 1 – 3)
It starts by giving a bit of background into Amy’s story and how she has tried and tested many ways of healing after being diagnosed with a variety of health issues including late stage Lyme disease. It also looks at what ‘the energy body’ is and what self-heal is, explaining a little bit about past life energies and generational energy, finished up with a brief outline of her three step approach to healing.

Section Two

‘A Tried and True Healing Process’ (Chapters 3 – 10)
This section is also dived in to ‘parts’; part one is chapters 3 and 4. Part two is chapters 5 and 6.Part three is chapters 7 – 10. These chapters are the bits where you start to learn about the various techniques and practices that can help you to heal. Each technique or practice is discussed in enough detail for you to understand how it works and how to use it effectively. You don’t have to be at all religious or spiritual to practice any of the techniques but if you are it explains how you can incorporate this into them (i.e. the wording that you use – in religious terms you may direct your focus or ‘voice’ your desires to god. Someone who is not spiritual or religious can just talk out loud to the universe or talk to their inner being).

Section Three

‘Final Insights and Encouragement’ (Chapters 11 -12)
This is the section that pulls everything you have learnt together. Its sort of a wrap up of the book giving you an idea of where to start, some final tips and guided direction.

Chapter by Chapter

Chapter One Is all about Amys story and how being sick lead her to trying different treatments. It talks about her relapses and how she started looking to more holistic and natural techniques to help deal with her stresses and underlying emotional issues, which she believes were holding her back from full recovery.

Chapter Two disucces Amys approach to mind – body – spirit healing and starts to explain how stress, negative thinking and ‘energy’ impacts on the body.

Chapter Three – Part One
Chapter three is split into three parts; part one expalins about how to surrender and stop ‘fighting’ against the body and allow yourself to move with the flow. It explains about how surrendering can help you and gives the first two practices that can help you to do this; they are chanting and grateful begging).

Chapter four discusses how to create a more solid foundation for yourself in order to heal and discusses grounding, the body’s polarities, energy cross overs, your thymus gland, focusing on better thoughts, Amy’s perspective of the law of attraction and journaling.

Chapter Five – Part Two
Part two goes on to discuss blockages and starts with chapter five, explaining about the sub conscious mind. It then goes on to discuss how to access the subconscious mind using muscle testing – what it is and how to use it as well as other useful tips. Chapter six then starts to look at learning the ‘language of your body’. This is about listening to what your body is telling you via symptoms, it talks about how to connect with your body, using your symptoms as clues to deeper issues that you might not be aware of. It also explains about the chakras of the body and how they are linked to certain health issues and what they may mean.

Chapter Seven – Part Three
Chapter seven talks about changing your relationship with stress and begins by explaining and looking at unprocessed experiences that we may be holding in our body. It talks more about using muscle testing to help identify past events or emotions that we might be holding on to unknowingly. It then gives two different techniques that can be used to help clear these unprocessed experiences (once we have used muscle testing to work out which events are holding us back). It’s within this section that you will learn about ‘thymus tap and test’ and about the ‘Emotional Freedom Technique’ (EFT).

Chapter Eight looks into releasing harmful beliefs, explaining how harmful beliefs can hold you back and block you from healing. It then gives two techniques that can be used to help to clean harmful beliefs, explaining in detail each technique so that you can decide which feels better for you and works best for you. The first technique is called the ‘sweep’ and the second is chakra tapping.

Chapter nine looks at transforming unhealthy emotional patterns such as negative self-talk, draining vocabulary and negative thought loops. Each of these (as well as a few other types of unhealthy emotional patterns) is explained in the book. It discusses ways of over-coming these types of negative emotional patterns and gives another technique called the three hearts, which can also be used to help deal with unprocessed experiences.

Chapter Ten discusses fear – what it is, the different types of fear, how it impacts on your life and how to overcome it. It looks at various ways of clearing these negative emotions and again goes through the Emotional Freedom Technique (EFT) and chakra tapping as well as other tips and ideas to help clear these negative emotions.

Chapter Eleven has a diagram of the ‘Healing Tree’ which is discussed at the start of the book. It is accompanied with questions which can be used with muscle testing to help you to identify where to start your healing journey. For example using the diagram and doing muscle testing you can ask “would it the most beneficial for me to work on _______?” and you could say “Chakras”. If muscle testing gave a ‘yes’ answer then you could start to use the techniques give in the book around chakras. This chapter also gives tips and other advice on how to help clear negative emotions as well as explaining the importance of creating a new routine.

Chapter Twelve is about moving forward in your healing journey. It discusses how you will likely have ups and downs and how to deal with them. It gives you a few tips on recognising the signs that you might be healing and explains how ‘baby steps’ are important. There are a few final reminders and a final note from Amy.

The End
The book finishes with some questions for those who read the book as part of a book club and additional resources.

Rating

I have to give this book a whopping 5 out of 5.
I’ve read a lot of books of this nature and I have to say that this is a good ‘all-rounder book’. What I mean when I say that, is that it gives you an insight in to a whole range of techniques and practices without going into too much detail. It’s very ‘to the point’, clear and easy to follow. All the techniques are talked though step by step and if you want more help Amy has a website and Facebook page where you can watch videos and ask further questions. Throughout, there are references to studies and research on the various techniques so that you can find out more if you want to.

I think that anyone who has a chronic health condition or reoccurring health issues should consider reading this book, because it helps you to understand how past experiences and behaviours may be hindering your ability to be well. Now I am not saying that your health issue is in your head – not at all, but the way we behave can be detrimental to our recovery (but we might not realise we are even behaving in such a way).

Now, I know that CFS/ ME and Lyme are two of the most tricky chronic health conditions that you can have, firstly because the NHS are pretty much useless in treating CFS/ ME and tend to slap the label on you and leave you to shrivel up and be alive but not living! Secondly they are incredibly behind on the Lyme issue that they still insist it’s ‘not possible to have an infection years after a becoming infected’ (oh really, let’s not talk about malaria or syphilis shall we – doh). And both of these conditions (ME/CFS & Lyme) are often slated by those who ‘don’t buy into it’ and regularly tagged as being “all in the head”. Those of us with these issues will know it’s not in our head, but there can be underlying issues, relating to how we behave and react emotionally that could be holding us back and triggering relapses.
For example as we go through life and deal with situations we can get stuck in behaviour patterns that can keep your ‘fight of flight’ system turned on. When this happens your body does what it has to in order to fight (whatever perceived threat it faces) or flight (run away from the perceived threat). The body doesn’t realise that the threat that you are faced with might be losing your job – it only responds to the body’s trigger of stress. It stops your body from doing silly things like digesting food or healing, because as far as its concerned, you are being chased by a tiger and need to stand up and fight or take flight, therefore it floods your body with adrenaline in order to do either of these things. If you are in a constant state of worry and stress because you think you may be losing your job, your body will be in a constant state of fight or flight. Even after you have lost your job and your circumstances change, your body can still be in this state and it starts to take its toll. Unless you take steps to take your body out of this state, no matter what drugs you take to heal your body, whatever herbs, supplements or foods you eat – until you fix that stress response, your body will never fully heal.

So that’s why it’s important to read a book like Amy’s – especially if you have been through a number of cycles of healing only to relapse again. It could be that some of the behaviours that you have, which at one point in your life would have been crucial to you getting through a situation, may now be holding you back.

You don’t even have to be religious or spiritual, the practices can just be used and seen as tools you use to help destress and allow yourself some time to zone out whenever you need to.

My Personal experience

I came across Amy’s book via a health coach who I follow on Instagram, who holds monthly book clubs (Amy’s book was the chosen book for that month). The title alone grasped my interest as I have health issues myself, and when I read about Amy’s experience with Lyme disease (which I also have) I felt that I had to at least read what the reviews had to say. I bought my book from Amazon as the reviews were so good and a lot of the things that people were saying connected with my own story and how I also felt.

Many of the practices and techniques were new to me, or were things I had heard of, but didn’t know what it entailed. I found the book so easy to read that I read a little bit every day and I was able to complete the book in just a few weeks.

Since I started the book I have been practising a few of the techniques daily or at least every few days and they can really help me to relax and let go of tension. Its also helped me to identify past emotions that I believed I had dealt with, but may actually still holding me back.
As a result of reading Amy’s book I have gone one to purchase a quite a few other books within the same genre, some related to the techniques that she discussed and some by the authors listed in the additional reading list.

I aim to also review a few of the other books that I have read that link to Amy’s book and the techniques she discusses, so watch out for other up-coming reviews.

Other Helpful Books

If you liked this book review you may also be interested in my other reviews of similar books, such as You Can Heal Your Life by Louise Hay, The Magic by Rhonda Byrne or You Are The Placebo by Dr Joe Diszpena.

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What is a SIBO Specific Carbohydrate Diet (SCD)?

What is a SIBO Specific Carbohydrate Diet (SCD)?

What is SIBO?

In short SIBO stands for Small Intestine Bacterial Overgrowth. It’s a gastrointestinal disorder that occurs when there are excessive bacteria in the small intestine. For more details and a list of symptoms please read my post “SIBO – A Basic Guide”.

A SIBO Specific Carbohydrate Diet is a combination of a SCD diet and a low FODMAP diet.

A Specific Carbohydrate Diet or SCD for short, is a way of eating developed by the biochemist and biologist Elaine Gottschall. Elaine developed the diet to help manage the symptoms of Crohn’s disease, celiac disease, chronic diarrhoea, colitis, cystic fibrosis and diverticulitis.

FODMAP is an acronym that stands for Fermentable, Oligosaccharides, Disaccharides, Monosaccharides and Polyols. They are all forms of carbohydrates that absorb water in the small intestines and pass through to the large intestine where they rapidly ferment as naturally occurring bacteria consume them. This fermentation process releases gas, and it’s this combined with the excess water that causes abdominal pain, discomfort, flatulence, bloating and many other gastrointestinal symptoms related to Irritable Bowel Syndrome (IBS) and Small Intestine Bacterial Overgrowth (SIBO). When a person follows a Low FODMAP diet they aim to eat foods that are low in these types of carbohydrates. For more details please read my post “Low FODMAP – A basic guide”.

What is a SIBO SCD diet used for?

It may seem like a silly question but the SIBO SCD can actually be used for a number of gastrointestinal disorders, not just SIBO as the name suggests. IBS, ulcerative colitis, crohn’s disease, celiac disease, and Inflammatory Bowel Disease (IBD) to name a few, can all benefit from following this diet.

How it works

People who suffer with IBS, SIBO and other gut issues tend to find it difficult to break down complex carbohydrates such as starchy and sugary foods. This leads to food being undigested in the gut allowing bacteria and yeast to feed off it, leading to bacterial and yeast overgrowths (an unbalanced intestinal flora). This goes on to cause a chain reaction of excess toxins and acids which can cause irritation, damages cells and stops food from absorbing properly.

By eating foods that are easily digested, it means the body is able to process/ digest it properly; therefore bacteria and yeast are not able to feed from it. This can help to rebalance the intestinal flora, reduce inflammation and allow the right digestion processes to occur. As the gut begins to heal and functions better, symptoms are reduced and in some cases can be completely healed.

The basics; what you can and can’t eat

The idea is to avoid starchy foods, eat low fibre and low fermentable fruits and vegetables. Be conscious of portion sizing, don’t eat any raw foods for the initial interim period and wait 4 hours between meals (Ideally 5 hours but this can be tricky for people who might work shifts etc, so 4 hours is acceptable).

There are a number of useful websites that list the types of SCD foods that you can/ can’t eat as well as low to high FODMAPs. Just remember that a SIBO SCD is a combination of BOTH these diets so if you are looking at a low FODMAP list, there may be foods on there that are NOT SCD allowed. It’s the same with SCD lists; you will need to cross reference them with a FODMAP list.

The top website listed below, has a list that is SIBO SCD foods– a combination of SCD and FODMAPS. It may help if you print this off.

SIBO Diet Recipes – this website has a SIBO SCD allowed/not allowed foods AND FODMAP list. That means that you won’t need to check it against a FODMAP list.

Dr Axe

Breaking the Vicious Cycle has a FULL A-Z list of SCD foods

Health Through Diet has a SCD foods list

Eat
Foods to eat include meat* and fish, fats, lactose free dairy, nuts, seeds, allowed fruit and vegetables and other ‘legal’ items.
*not including bacon, chorizo, sausages or meats that will have other ingredients in.

Avoid
Foods to avoid include all grains (including quinoa and oats), all sugars, soy, tubers (arrowroot, parsnips, tapioca) no gums or thickeners such as carrageen or guar gum, no garlic or onions, no mucilaginous foods such as flaxseed, chia, aloe or astragalus.

Where to start

There are two elements to the diet the first part is the SCD side, where foods are split into ‘illegal’ and ‘legal’ food groups. You need to remove all the foods from your diet that fall into the ‘illegal’ category. These foods will remain the same no matter how long you have been on the diet.

However, the second part of the diet – the FODMAPs change after you have been on the diet for some time and you are feeling the benefits (e.g. are symptom free).

FODMAPs are split into three categories – low, moderate and high. When you start the diet you will be eating all the foods in the low category. Some foods are considered low FODMAP if you eat a small portion, but if you eat more than the recommended portion size it can fall into the moderate category. For example 1 cup of cabbage is considered low FODMAP, whereas more than one cup will be considered moderate FODMAP.

Once you have adapted to eating SIBO SCD and are feeling better you can start to re-introduce or increase some of the FODMAP foods, by eating from the moderate category.

It can take time to re-introduce or increase foods, as it’s possible that you may react to some of them. You need to reintroduce one food item at a time so that you can monitor your response to them. Start with a very small portion and if you feel ok eating it (e.g. have no symptoms such as flatulence and bloating) then next time try increasing the portion size.

If you do notice your symptoms flaring after reintroducing a FODMAP then you need to discontinue this food and mark it down as one of the foods you don’t tolerate. If you notice your symptoms flare only after eating the larger portion size then make a note of the amount you were able to eat without any issues.

Many of the websites I have read suggest two weeks as the initial period (the time before you can start to reintroduce foods). However I would say 2 weeks as a minimum and see how you feel. If, like me, you have serious chronic health issues, it can take your body a lot longer to adjust/ respond to things.

My Story

If you have been following me for some time you will know that I’m not new to the world of elimination diets. In 2013 my private specialist doctor recommended a Stone Age diet (eating clean, unprocessed foods) to help manage my symptoms of Myalgic Encephalopathy. In 2014 she also recommended I follow a ketogenic diet – combining it with Stone Age eating. The idea was that by eating clean, I was able to avoid chemicals, preservatives and additives in foods, which can stress the body and digestive system. By adding in the ketogenic diet I was able to push my body into using fat a fuel, which can help with mitochondrial function as well as my gut issues.
After antibiotic treatment for Lyme disease my gut issues got worse and the NHS just confirmed the IBS label I had already been given (I had private testing that confirmed I had SIBO).
In 2016 I embarked upon an Auto Immune Protocol (AIP) diet to help identify foods that I was sensitive to. I combined this with a Low FODMAP diet which is recommended for IBS. I found combining these ways of eating with the ketogenic aspect to be incredibly complicated and quite stressful, so I ditched being ketogenic and focused on just being low carb.

I’ve found AIP and Low FODMAP incredibly helpful in identifying some of the foods that I am sensitive to, and it’s helped reduce my symptoms massively. However I’ve struggled with reintroductions – finding that some days, I react to foods and other days having no reaction. I got really fed up and frustrated and felt like I needed to go back to the drawing board and start again.

Originally when I first looked at diets specific to SIBO, I had bookmarked a few websites for the SIBO Specific Carbohydrate Diet. I decided to have another read through and seeing that it had a 75% chance of improvement (1), I felt it was the best next step for me.

I will still have to remain AIP for the mean time, as it takes time to reintroduce foods, but my aim is to add in all the foods that are on a ‘NO’ AIP list, that are compliant with a SIBO SCD.
If you want to know more about my health and the diets I have been using to help manage my symptoms then take a look at the following posts. You can also follow me on Instagram and Facebook.

Tips

Food Diary – I recommend a food diary because it can really make the difference in spotting if you respond to something. I’ve been following a variety of elimination diets for a while now and I have been terrible at keeping a food diary (i.e. haven’t logged a thing – eeek!). I recently decided I needed to get a better grip of things and purchased a Low FODMAP diary from amazon. It’s been a life changer, helping me to recognise when I react to foods. The book I purchased (2) was £4.99 but you could easily buy a plain note pad from a pound store and use that instead. You just need to note down what time you eat, what you eat and whether any symptoms arise after eating it. It also helps to note down bowel movements, water intake, and stress levels.

The Four Dark Horsemen (3) – The SCD lifestyle website suggests that there are four possible ‘bad guys’ that are the reason you may not see any improvement on the SIBO SCD. They are listed as Dairy, Eggs, Nuts and Excessive fruit/ honey.

These are all foods that I have already eliminated on the AIP diet and am still slowly working on reintroducing them (eggs and nuts only). I would recommend eliminating them when you start the SIBO SCD diet and get it out the way. I say this because you may be surprised to find out that you react to them when you later reintroduce. Through the AIP diet I have discovered a number of foods that I react to that I would have sworn I would be fine eating! It gets easier to recognise flare ups or reactions when you have been symptom free for a while.

Timings – It’s recommended that you leave 5 hours (although 4 hours is acceptable) between meals and the reason for this is so that it gives the gut a chance to digest your meal and have what’s known as a ‘housekeeping wave’ (4).

The intestine has two modes that it can be in – either an eating mode (which is self-explanatory) or cleaning mode (housekeeping wave) which is when it cleans up and empties into the colon. A housekeeping wave occurs every 90 minutes and is a strong repetitive motion (like a wave) that pushes leftover indigestible material into the colon. However if you are always eating and snacking, the intestine will be constantly in eating mode and indigestible materials will be left to ferment and be snacked on by bacteria!

Meal Planning It might be a struggle to eat meals with such a large time gap, especially for those who may have set work breaks or those who may eat at certain times (e.g. with children after school).

As a result I highly recommend doing a bit of meal planning, so that you are able to leave enough time between meals to allow for a cleaning wave. For example, it might help to work backwards if you know that you need to eat your last meal at 6pm. This would mean that you would have lunch at 1pm and your breakfast at 8am.

Whatever way round you work it, it helps to plan what meals you eat each week – including breakfast choices because it means you won’t have to spend time faffing and trying to decide what to eat (which often leads to snacking or picking!).

It helps to find a few recipes and get the ingredients in that you need to make them, before you start the diet. That way you are less likely to fall off the waggon or cheat.
I will include a list of websites with recipes on so that you can take a look. Just remember that some of the recipes will be for when you have reintroduced foods, especially desserts that may use honey to sweeten them.

Websites

The websites listed below are good for information, lists, recipes and other useful resources (such as useful supplements and testing etc). The first two websites are also listed above, but these links take you to the recipe sections.

SIBO Diet Recipes
Dr Axe
The Healthy Gut
Bridgetown Nutrition
SCD Lifestyle
My SIBO Recipes

Final Note

If you have found this information useful or want to add anything that you think will help others, please comment below. I always appreciate feedback and additional information – it not only helps me, but it helps other readers too.

Referencing

(1) The Vicious Cycle – Elain Gottschall; http://www.breakingtheviciouscycle.info/p/about-the-diet/

(2) Amazon – Low FODMAP Food Diary – https://www.amazon.co.uk/Low-FODMAP-Food-Diary-Digestive/dp/1911492055/ref=sr_1_1?ie=UTF8&qid=1498658576&sr=8-1&keywords=fodmap+diary

(3) The Four Dark Horsemen – SCD Lifestyle; http://scdlifestyle.com/2011/03/what-to-do-when-the-scd-diet-isnt-working/

(4) Cedars Sinai Medical Centre – Low Fermentation / SIBO diet; http://www.siboinfo.com/handouts.html

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Low FODMAP Diet – A basic guide

Low FODMAP Diet – A basic Guide

 

I have recently embarked upon a low FODMAP diet to help manage the symptoms of two digestive disorders that I suffer known as Irritable Bowel Syndrome (IBS) and Small Intestine Bacterial Overgrowth (SIBO). Below I will be discussing the reasons for following a FODMAP diet and how it works, but if you want to know more about IBS and SIBO then I recommend you take a look at my previous posts SIBO – a basic guide and Autoimmune Protocol – The basics (which discusses IBS).

What is it?

A low FODMAP diet is a type of elimination diet used by people with Irritable Bowel Syndrome (IBS) to help identity foods which may be causing their digestive issues. The term FODMAPs refers to Fermentable, Oligo-saccharides, Di-saccharides, mono-saccharides and polys.

F – Fermentable; these types of foods are fermented in the large bowel, broken down by bacteria.
O – Oligo-saccharides; oligo stands for ‘few’ and saccharides means sugar. These molecules are individual sugars joined together in a chain
D – Di-saccharides; the ‘di’ means two, making this a double sugar molecule.
M – Mono-saccharides; Mono means single, this is a single molecule sugar.
A (and)
P – Ployols are sugar alcohols; they get their name from their molecule make up, because they are between a sugar and an alcohol molecule, they aren’t actually alcohol!

These are all types of short-chain carbohydrates which have been identified as being problematic to those with digestive issues. Research has shown that if these short chain carbohydrates aren’t properly digested they can ferment in the lower part of the large intestines, drawing in water hydrogen and methane causing issues such as bloating, gas and pain. There have been many studies carried out using a low FODMAP diet to help manage the symptoms of IBS and the results found that as many as 3 out of 4 patients reduced their symptoms by up to 50%. Although the diet is aimed at those with IBS, it can and has been used to help manage the symptoms of a number of health conditions such as those who no longer have a colon, those with other forms of functional gastrointestinal disorders, those with a small intestine bacterial overgrowth, those with auto immune conditions* (such as rheumatoid arthritis, multiple sclerosis) and those with fibromyalgia.

How a FODMAP diet works

When starting a low FODMAP diet a patient has to cut out all foods high in FODMAPs for about 6 – 8 weeks**. It takes a minimum of three weeks for the gut to ‘reset’ so ideally a patient shouldn’t look to reintroduce foods before this. This gives the gut time to repair and heal, calming inflammation that will have occurred. After the 6-8 weeks a patient can then very slowly start to reintroduce foods, starting with just one food type at a time. Ideally a patient should start with a smaller potion and if tolerated work up to a bigger portion size. It can take about 2-3 days for symptoms to show so some websites suggest reintroducing one item of food every 5 days.
Patients are recommended to keep a diary of how they feel after introducing foods so that they can identify any that cause them issues, also noting down if they feel ok on smaller amounts of a food and unwell on higher amounts. If this occurs then it means a person can enjoy that food in smaller doses but they should avoid eating too much of it.

* For more details on Autoimmune (AI) conditions take a look at my posts Autoimmune Protocol a basic guide.

** There are websites that suggest that it’s ok to reintroduce items after 3 weeks, but that’s usually if a person has had a breath test to determine if certain foods are triggers for them. If you don’t allow your gut time to heal and inflammation to reduce, you won’t be able to tell if a food is causing you issues when reintroducing them.

FODMAP foods

FODMAPS are generally split into sub groups, they include; fructose, fructans, galacto-oligosaccharides (GOS), lactose and polys.

Fructose; Fructose (in excess of glucose) is found in fruits such as apples, melons and mango, it’s also found in high fructose corn syrup and honey.
Fructans are found in wheat, garlic, onion, and inulin
Galacto-Oligosaccharides (GOS) are found in legumes and beans, such as lentils and soybeans.
Polyols are found in sweeteners such as xylitol, erythritol, sorbitol, mannitol and stone fruits such as avocado, apricots, cherries, plums, nectarines and peaches.
Lactose is found in dairy items such as buttermilk, chocolate, creamy cheeses and cheese sauces, custard, ice cream and milk (including goat’s milk).

There are some foods that are considered ‘Moderate’ FODMAPs. Some websites suggest that they can be eaten during the elimination phase but you have to be aware of the portion size. If too much of a moderate item is consumed, it then becomes high FODMAP. Some websites suggest avoiding these-++- moderate items completely during the initial elimination stage then look to reintroduce them first in the reintroduction period. If you are unsure what foods are triggers for you then it’s worth avoiding them for the 6-8 week period, so that when you do decide to reintroduce them (again, you will still need to monitor the portion size), you will be able to detect if there they cause any flare in your symptoms.

FODMAP – Food Lists
To find out more about foods that are low, moderate or high in FODMAPs check out the Monash University website. Dr Sue Shepherd was the first person to examine a low FODMAP diet in connection to digestive distress. She now works closely with professor Peter Gibson at Monash University where they continue to carry out research on FODMAPs and IBS. As they are the leading researchers in this area the always have the most up to date details on foods that are low FODMAP. They also have an app that you can download via iOS or Android where you can look up the foods, make notes on items, record your responses during reintroduction as well as tons of recipes. The app is about £5.99.

Monash University here and here

Diet Vs Disease

Kate Scarlata

FODMAP Friendly here and here

Books
There are tons of websites and books around gut health and FODMAPs and its worth investing in a book or two so that you can keep a copy in the kitchen for FODMAP reference. You can also go online and print of lists too; I personally have a number of websites saved in my bookmarks on my computer and in my iPhone so that I can always refer to them if needed. I have listed two books below that I bought myself. I have to note that neither of these books are autoimmune protocol or paleo.

Low-FODMAP: Low-FODMAP Recipes: Healthy Low-FODMAP Diet Plan & Recipes Cookbook to Get IBS Relief and Improve Digestions, The Foods for Healthy Gut Paperback – by Warawaran Roongruangsri

The Quiet Gut Cookbook; 135 easy low FODMAP recipes to soothe symptoms of IBS, OBE ad Celoac Disease – by Sonoma Press

Tips
For some useful tips on how to follow an elimination diet you can have a look at my AIP – the basics article, where it gives a step by step guide to following the autoimmune protocol (AIP) diet. Although it’s a different form of elimination diet, it still has the same principles – you need to prepare, plan and be organised so that once you start on your elimination journey you aren’t likely to ‘fall off the waggon’ .

My story
In 2013 I began a paleo diet to help manage my symptoms of Myalgic Encepalopathy (ME)***. In 2014 tweaked my diet further to incorporate a ketogenic diet (very low carb – high fat) as I was diagnosed with Small Intestine Bacterial Overgrowth (SIBO) as well as auto brewery syndrome (or fermenting gut as my specialist prefers to refer to it). As my symptoms have not improved much and my SIBO is still active, I recently began a protocol to target the bacterial overgrowth known as The Gut Health Protocol TGHP (See SIBO article for more details). TGHP targets the bacterial infection using natural supplements and combines the low FODMAP diet with a ketogenic diet. If a person is known to suffer an autoimmune (AI) condition or similar, then an autoimmune protocol is also advised, as ME has many of the symptoms of an AI condition I am also following this protocol. As a result, the recipes I will be making from now on will be low carb (ketogenic), low FODMAP and AIP! I hope that by sharing them, it will help others who might also be following this combination of elimination diets.

If you want to know more about any of these diets then take a look at my ‘health’ section where you will find information on the paleo diet, the ketogenic diet, SIBO and AIP.

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Autoimmune Protocol (AIP) – The Basics

Auto Immune Protocol (AIP) Diet – A Basic Guide

For those of you who are regular visitors to my blog you will know that I recently embarked on something called The Gut Health Protocol (TGHP), tweaking my currently paleo/ ketogenic diet to an Auto Immune Protocol (AIP)and Low Fermentable Oligo-saccharides, Di-saccharides and Mono-saccharides & Polys diet or low FODMAP’s for short! (Yes, it’s a bit of a mouthful!!)
The protocol I am following is to treat my Small Intestine Bacterial Overgrowth (SIBO) which is an imbalance in the bacteria and types of bacteria in the gut. If you haven’t already taken a look, you can read my article about it here.
TGHP is a basic protocol that is the same for everyone, then you add in and/or tweak certain areas of it to work around your symptoms of SIBO and any other health conditions that you may have. As I have been following the paleo diet for three years now and am still suffering with a range of issues, one of the add-ons that is suggested for those with auto immune conditions, is adapting to an Auto Immune Protocol diet.

What is Autoimmune disease?

It is suggested that there are over 80 different kinds of auto immune diseases and they can affect any part of the body. They tend to be characterised by an under or over active immune system. With an over active system the body may begin producing antibodies that instead of fighting infections, attack the body’s own tissues, (Auto Immune Disease) decreasing the immune system’s ability to fight invaders. The trigger is often unknown but they all lead to chronic inflammation and tissue damage.
There is no cure for auto immune diseases but treatment focuses on reducing immune system activity. Dr Sarah Ballantyne A.K.A ‘The Paleo Mom’ has published a number of books on AIP and states that although there is no cure, you can put an AI disease into remission using the right type of diet and supplementing where needed. The differences in conditions are the areas / organs that are impacted on.

To give you an example, the first three AI conditions will be explained very briefly.

Types of auto immune diseases include:
• Rheumatoid arthritis – this impact’s on the joints in the body. Antibodies produced by the immune system attach to the linings of joints. Cells from the immune system can then attack the joints causing swelling, inflammation and pain.
• Multiple Sclerosis (MS) – The immune system attacks nerve cells causing symptoms such as pain, weakness, and poor coordination and muscle spasms.
• Psoriasis – is an overactive immune system where blood cells (called T-cells) collect in the skin. The over activity stimulates skin cells to reproduce more rapidly producing silvery scaly plaques on the skin.

• Lupus
• Inflammatory bowel disease (IBD)
• Type 1 Diabetes mellitus
• Graves’ disease.
• Hashimoto’s thyroiditis
• Myasthenia gravis
• Vasculitis
• Coeliac
• Alopecia

Depending on what website you read depends on whether Chronic Fatigue Syndrome (CFS) and Fibromyalgia are considered auto immune diseases. Some medical sites will suggest that they are not, even though they display many of the symptoms of an AI disease. New research suggests that a condition known as leaky gut (tiny holes in your gut wall) is responsible for all auto immune diseases. Leaky gut has been linked to both Chronic Fatigue Syndrome and Fibromyalgia so it’s possible that following an AIP diet could help reduce the symptoms of these two conditions.

Leaky Gut

The gut wall has been found to produce a chemical knows as zonulin which helps the gut to moderate its environment. Usually the gut wall remains closed and only small molecules such as nutrients are able to pass though the gut lining and into the body. Occasionally the gut wall will open in order to flush out unwanted invaders such as infection in the intestines. However if the cell wall produces too much zonulin, then the gut wall can remain open for some time. This can allow food, bacteria and other debris from your intestines to leak into your body, causing inflammation; this is what’s known as ‘leaky gut’. If the issue isn’t fixed then it becomes chronic and triggers disease. Research suggests that anti- nutrient foods such as grains, gluten and legumes are possible triggers for leaky gut as well as imbalances in the gut bacteria (known as gut dysbiosis).

How AIP works

AIP is a form of elimination diet which looks to remove certain foods and food groups that are known to aggravate the gut, cause inflammation, gut dysbiosis and activate the immune system. The AIP diet is very nutrient dense so although you may be cutting out a wide range of foods, you don’t have to worry that you won’t be getting enough nutrients.

By removing certain food groups for a period of time it helps to reduce inflammation in the gut allowing it to heal and symptoms to reduce/ clear. Once a person is feeling well and has had no flare ups, many of the foods that have been avoided are slowly (VERY slowly and one by one) reintroduced. Patients are encouraged to keep a food diary when reintroducing foods and only introduce one food item every 5 days. When a food item is added back into the diet you should allow 72 hours for any symptoms to arise as this is how long it can take for Auto Immune (AI) symptoms to flare up if the food is causing issues. If a food item doesn’t cause any issues then it is safe to add back into the diet, but for the foods that cause any symptoms to return, they are best avoided completely. Some people may find that they can tolerate small doses of certain foods but larger amounts might cause issues. By keeping a food diary and monitoring the amounts when reintroduced this can help you work out the amounts you can tolerate.

Ideally there are certain food groups that you should continue to avoid to prevent relapsing / causing your condition to flare up again. Foods that are heavily processed and contain a lot of artificial flavours and colourings, foods that are extremely artificial, products that contain lots of sugar, grains, gluten and certain beans and legumes. It also helps to eat food that is of the best quality such as organic grass fed meats, line caught fish, free range eggs, organic vegetables and fruit and any other ingredients sourced organically. The reason for this is because organic ingredients won’t have been treated with pesticides or chemical fertilisers; animal products won’t have been treated with antibiotic drugs or fed artificial food. An ingredient that is organic tends to be more ethically sourced too. Over all it means that the food you eat won’t be filling your body full of ‘nasties’, which means your gut doesn’t get damaged and your body isn’t filled with unnatural chemicals!

Going AIP

If you are familiar with the paleo diet then you will already be familiar with what kinds of foods that are and aren’t allowed (as well as the reasons for avoiding them!). However if you are new to paleo then it may be a little bit overwhelming as there will be a lot of adaptions to make such as foods to avoid, foods to introduce, how to use these new and possibly unfamiliar ingredients, tips for living your life this way and tips for being organised.

In short the autoimmune protocol avoids ingredients that aggravate the gut such as grains, legumes, beans, nightshades (which will be explained below), dairy, eggs, nuts, seeds, foods that contain unnatural (artificial) chemicals and additives. I will give links to the ‘yes – no’ lists so that you can have a look at the full list of ingredients.

*Nightshades or ‘the Solanaceae’ are a family of flowering plants ranging from annual and perennial herbs to vines, shrubs, trees, agricultural crops, spices, weeds and medicinal plants. Many of these contain alkaloids and some are even highly toxic! They commonly include collected and cultivated species including the potato (white), tomatoes, aubergine (eggplant), capsicum including bell peppers and chillies, paprika, pimentos, cape gooseberry and goji berries. The whole list can be found on the Paleo Mom’s page. It also includes other items that are not food such as ashwagandha (ginseng) and tobacco!

As well as removing foods you will be adding in things that you may not be familiar with such as bone broth, organ meats, foods that are fermented / probiotic as well as the more ‘normal’ things such as high quality meat and fish, organic fruit and vegetables.
If you are considering going AIP then you need to allow yourself about a week to do some planning, buying in foods so that you are prepared, maybe batch cooking a meal or two and printing off the ‘yes’ ‘no’ lists so that you are familiar with the things you can and can’t have.

First of all I recommend doing a bit of reading; The blogs below are ones that I have found particularly useful but you can do a google search and there will be more than enough websites for you to choose from. I currently only have one AIP cookbook as it was what I bought when I first decided to go paleo. At the moment I also have to follow a Low FODMAPs diet, meaning my diet is even more restricted so AIP cook books offer me limited recipes. However, if you are only following AIP then the following books might be worth purchasing based on what I have heard about them.

Blogs to read

Autoimmune Paleo
AIP lifestyle
The Paleo Mom
Phoenix Helix
Paleo Cajun Lady

Books to buy

  • The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol – Angie Alt
  • The Paleo Approach: Reverse Autoimmune Disease and Heal Your body (not a cookbook) AND The Paleo Approach Cookbook: A
  • Detailed Guide to Heal Your Body and Nourish Your Soul – Sara Ballantyne
  • The Autoimmune Paleo Cookbook Hardcover – Mickey Trescott
  • The Healing Kitchen: 175 + Quick and Easy Paleo Recipes to Help You Thrive Paperback – Alaena Harber, Sarah Ballantyne
  • Seven Steps to AIP

Tips

Before you embark on the AIP diet, its best to set a start date and stick to it! Give yourself the time to prepare and you will find it easier to stick with.
Step One – print out a list of the yes/ no ingredients and keep them in the kitchen for quick reference. It’s also handy to save the yes-no list as a book mark on your computer and on your mobile phone if you have one. That way if you are online shopping or out in a store, you can quickly reference the items you can and can’t have. If internet signal is an issue you can always screen shot or photograph a copy of both lists so that you can call it up when you need it. For those without a mobile try the old fashioned way of keeping a written list in your bag or wallet.
Step Two – find a few recipes that you feel confident to try; ideally stick to recipes that you may be familiar with such as family classics – Bolognese, roast chicken/meat dinner with veg, meatballs, cottage pie those sorts of things then find an AIP version. Once you have a handful of recipes write down the ingredients that you’ll need to make them.
Step Three – Do a food shop! Once you have found the recipes you want to make its time to source the ingredients. In the UK online shops tend to have more variety than going into the stores and sometimes it’s cheaper to buy some ingredients in bulk (such as seasoning, meat and cooking oils). If you don’t work weekends then it would be a good idea to plan to get your food shop on a Friday and then spend the weekend organising your fridge and cooking meals.
Step Four – Cooking/ preparing your meals; Batch cooking is the best way to get ahead with the AIP diet and it makes it so much easier to stay on track. Make up a big pot of a recipe so that when you come to start the diet you have some meals already made up. You could make a batch of cottage pie, cut into portions and freeze some so that you have them for another time (just remember to write the name/ date on them). Soups and stews are also really easy to make especially if you have a slow cooker. If you don’t own a slow cooker it’s really worth investing in one as it will make your life so much easier. Soups and stews can be left cooking while you are at work and are ready to serve the moment you walk through the door!
Tip –when batch cooking for the first time, you want to have 2-3 recipes made so that you have a lunch and an evening meal for the first three days as they will probably be the hardest. Breakfasts are usually the trickiest as you are limited to what you can take with you on the go. Some pancake recipes can be made the day before and kept in the fridge, or you can pre-cook meat (slices of ham, homemade sausages or patties) and serve with some sauerkraut (fermented veggies that are naturally probiotic) and olives, or some homemade coconut milk kefir (probiotic yogurt) with some fresh fruit.
Step Five – You are ready to start eating AIP! To ensure you stay on track plan out the foods you plan to eat for the first week. Draw up a table if you need to, tab the pages of the cook books / print out the recipes and make sure you have everything you need.
Step Six – Keep a diary; it’s easy to forget all the symptoms that you are suffering, especially once you start to improve so by keeping a diary it helps you to really see how much you are improving (or if not, clues as to why not could be in the diary).
Step Seven – Keep planning ahead; continue to look for recipes to try because as you become more familiar with this way of eating, you will become more confident at working with the ingredients. If you are not sure how to use a certain ingredient or want tips on how to utilise it then YouTube is a good place to start! Just type in the ingredient or try ‘autoimmune protocol’ and the ingredient and you should get some tips, recipes and information on it.

Yes-No lists

Below are a few websites that have a good list of yes and no foods. Sometimes you will find conflicting information, but as a rule of thumb I tend to check out ‘The Paleo Mom’ first as Sarah Ballantyne is the leading woman for autoimmune and has written a few books about the subject! It’s entirely up to you what information you decide to go with but just remember to note down if any foods give you issues – especially if they are foods that are a grey area! (Maybe foods – see The Paleo Mom link).
• The Paleo Mom – http://www.thepaleomom.com/wp-content/uploads/2014/08/Yes-No-Maybe-So-List.pdf
• Paleo Cajun Lady – http://www.paleocajunlady.com/autoimmune-paleo/
• Ultimate Paleo Guide – https://ultimatepaleoguide.com/autoimmune-protocol/
• Phoenix Helix – http://www.phoenixhelix.com/2013/06/02/paleo-aip-grocery-list/

FODMAPs

Finally I want to mention FODMAPs because the subject tends to get mentioned a lot in the AIP and it is closely linked to autoimmune disease. It’s basically another form of elimination diet that people follow to help with certain gut issues (such as SIBO – for more details see my last article). It focuses on removing food groups that are types of sugars that the body finds hard to digest. The types of sugars are broken down into sub groups – fructose, lactose, sugar polyols, fructans and galacto-oligosaccharides (GOS). These sugars are found in fruits (fructose), milk (lactose), sorbitol which is often used to sweeten foods (sugar polyols), onions and garlic (fructans) and legumes such as baked beans (GOS). Some of these foods will be on the AIP ‘yes’ list but a person who is also following a Low FODMAPs diet will have to also eliminate these foods too.

A low FODMAPs diet is recommended to those who suffer with Irritable Bowel Syndrome (IBS), but it can be recommended to anyone who is suffering from the symptoms of IBS list (below). Ideally you would want to speak with your doctor first if you are having serious gut issues, so that they can rule out any other causes.
Like the AIP diet you follow a low FODMAPs diet for a period of time (until the gut has improved) before reintroducing foods. As foods are reintroduced a person should keep a diary so that they can monitor any symptoms. With FODMAPs you may react to larger amounts of some foods but be able to eat them in much smaller doses. Some people find that they tend to react more to some of the sugar sub groups than others. For example they may not be able to eat any of the foods in the fructans and GOS group, but they may be able to tolerate sugar polyols, fructose and lactose. Foods that are an issue should be avoided completely as they will only continue to aggravate the gut and flare symptoms.

IBS

IBS is a long term condition of the digestive system that is thought to be related to increased sensitivity in the gut and problems with food digestion. Symptoms can differ from person to person as can the severity. It tends to first develop in people between the ages of 20 – 30 years old, affecting twice as many women as it does men. There is no cure although medication can be used to help with the pain and discomfort. Patients of IBS are encouraged to reduce the amount of fibre in their diet, take regular exercise, reduce stress and identify foods that trigger their symptoms!

Symptoms Include;
• abdominal (stomach) pain and cramping, which may be relieved by having a bowel movement
• Occasionally experiencing an urgent need to go to the toilet
• Feeling like you haven’t fully emptied your bowels after going to the toilet
• Bloating and swelling of the stomach
• Passing mucus
• Excessive wind (flatulence)
• Diarrhoea
• Constipation
Additional Issues such as
• Lethargy (lack of energy)
• Feeling sick
• Back ache
• Bladder problems such as waking in the night and needing to urinate; difficulty emptying the bladder, in server cases incontinence
• Pain during sex (Dyspareunia)
• Some people may suffer depression and / or anxiety

References

Dr Sara Gottfried MD – Is the autoimmune protocol necessary- http://www.saragottfriedmd.com/is-the-autoimmune-protocol-necessary/
Dr Chris Kresser – https://chriskresser.com/5-steps-to-personalizing-your-autoimmune-paleo-protocol/
Fasano, A., 2Sonulin, regulation of tight junctions, and autoimmune disease,” Annals of the New York Academy of Sciences1258 (2012) : 25-33 – https://www.ncbi.nlm.nih.gov/pubmed/21248165
NHS; Irritable Bowel Syndrome – http://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/Symptoms.aspx
Office on Women’s Heath; Auto Immune Diseases Fact Sheet- https://www.womenshealth.gov/publications/our-publications/fact-sheet/autoimmune-diseases.html#a
The Paleo Mom; The auto immune protocol – http://www.thepaleomom.com/the-autoimmune-protocol/
The Alternative Daily; Leaky gut causing chronic fatigue – http://www.thealternativedaily.com/leaky-gut-causing-chronic-fatigue/
University Health News; 5 top reasons you might have leaky gut syndrome and feel tired all the time or have depression symptoms- http://universityhealthnews.com/daily/energy/5-top-reasons-you-might-have-leaky-gut-syndrome-and-feel-tired-all-the-time-or-have-depression-symptoms/

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SIBO – A Basic Guide

SIBO – A Basic Guide

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For the last month or so I have been reading and looking into something called Small Intestine Bacterial Overgrowth or SIBO for short. You see back in 2014 I was (privately) diagnosed with it and I have been taking antibiotics combined with two ways of eating (paleo and ketogenic) to help manage/ combat the symptoms. Unfortunately it hasn’t been enough to clear up the overgrowth and as a result I have been suffering. I have been back and forth to my GP who have told me that it’s IBS and there is nothing I can do about it! After trying to manage the symptoms by myself, I returned to my GP who referred me and I underwent a procedure known as a flexible Sigmoidoscopy; due to intolerance’s to the ingredients in the prep sachet’s, I was unable to have a full colonoscopy which was what I had originally been referred for!.

From my research and experience it seems that the NHS don’t really do much for the treatment of IBS symptoms and their SIBO treatment is limited. Other than prescribing antibiotics (for SIBO) which can often aggravate it, or giving relaxant medication to help with the pain/ inflammation (for IBS) they don’t actually TREAT the underlying problem! As my SIBO was discovered through private testing, the NHS won’t accept the diagnosis. As a result I decided it was time to up the tempo and aim to target the SIBO all guns blazing (so to speak!).

What is SIBO
The small intestine is part of the digestive system, connecting to the stomach and large bowel. Its main function is to digest and absorb food into the body. Food empties from the stomach into the first part of the small intestine known as the duodenum; the food makes its way through the jejunum (the second part of the small intestine) and into the third and final part known as the ileum, which then empties undigested food into the large intestine (also known as the colon).
The gastrointestinal tract is the whole system in your body that works together to digest food and it (normally) contains bacteria; the number of bacteria is at its highest in the colon and at the least in the small intestine, the types of bacteria also differ from one organ to the next.

SIBO is when there are abnormally large numbers of bacteria in the small intestine and the types of bacteria are more like the ones found in the colon. Usually the gastrointestinal tract (a muscular tube), moves food through the small intestine and into the colon; However its thought that if this system is interrupted/ slowed and the gastrointestinal tract isn’t as active as it should be, it can allow bacteria to stay longer in the small intestine and multiply. It’s also thought that the lack of activity can allow bacteria to spread backwards from the colon and into the small intestine.

What causes it?

There are a whole range of reasons for the normal activity of the gastrointestinal tract to slow down and they are:-

•Recent antibiotic use – antibiotics can interfere with the levels of bacteria, leaving the gut susceptible to colonisation by pathogenic bacteria
•Proton pump inhibitors PPIs can reduce stomach acid and impact on the bacterial growth in the stomach
•Neurological and muscular diseases can alter the normal activity, for example Diabetes mellitus damages the nerves that control the intestinal muscles and Scleroderma which damages the intestinal muscles directly.
•Partial or intermittent obstruction in the SI, obstructions include things such as adhesion’s or scarring from past surgery (e.g. Crohn’s disease)
•Diverticuli – small pouches in the small intestine can allow bacteria to multiply
•Alcohol consumption
•NSAIDS such as ibuprofen can damage the intestinal wall
•Chronic pancreatitis
•Poor diet – bacteria love carbohydrates and sugar
•Lactose intolerance
•Malabsorption disorders such as fructose or glucose malabsorption
•Coeliac disease
•Food poisoning

What are the symptoms?
The symptoms of SIBO are often the same as that for intestinal candida infection and many other gut issues such as IBS; the most recent research even suggests that as many as 50% of those diagnosed with IBS may actually have SIBO! (Shocking huh?!)

Symptoms include
Excessive fullness after a meal
Gas/ bloating
Weakness
Indigestion
Abdominal pain
Constipation
Cramping after meals
Diarrhoea
Abdominal fullness
Flatulence
Fatigue

Research also suggests that those with SIBO tend to have secondary conditions such as:-
Rheumatoid arthritis
Fibromyalgia
Magnesium deficiency
Folate/ iron/ B12/ fat soluble deficiencies
Carbohydrate and protein mal-absorption
Rosacea
Weight loss

When an overgrowth is prolonged and severe, the bacteria can interfere with digestion and absorption of food leading to deficiencies of vitamins and minerals. It can cause patients to lose weight, suffer with pain and fatigue – symptoms not directly thought of as gastrointestinal. When bacteria digest food in the intestine they produce gas which can cause bloating and distension which can cause abdominal pain; increased gas causes flatulence. The bacteria convert food into substances that are toxic to the inner lining of the SI and colon, causing diarrhoea.

Methane or hydrogen?
As if it’s not complicated enough, research indicates that depending on the type of organisms that dominates your overgrowth, depends on what type of SIBO you suffer!! SIBO can be methane producing or hydrogen producing. If you suffer diarrhoea it’s likely you have methane producing bacteria, this is referred to as SIBO-D, the D is for diarrhoea; if you suffer from constipation it’s likely to be archaea (which will be explained below) as they feed off hydrogen. This is called SIBO-C, the C is for constipation.

Archaea were once thought to be a type of bacteria but they are actually a single cell organism which lacks a nucleus, has no membrane bound organelles and are what’s known as a prokaryotes.

In a healthy gut, food is broken down and absorbed into the blood through the small intestine wall; however if you have a bacterial overgrowth, high levels of bacteria cause unabsorbed carbohydrates in foods to ferment before they can be broken down. This fermentation causes a by-product called hydrogen gas. The bacterial overgrowth also produces toxins that irritate the gut lining which is what causes diarrhoea.

However, if you have archaea in your gut it’s a different story! You see when you eat fibre, the bacteria in your gut starts to ferment it. The process of fermentation produces hydrogen and archaea feed of the hydrogen, then produce methane as a by-product. The methane has a number of negative effects on the body, constipation being the one, which is why archaea SIBO is known as SIBO-C.

It’s pretty complicated because bacterial overgrowth = Hydrogen = archaea = methane gas. So it’s a little bit like the chicken and the egg – it’s hard to know which one came first.

It can help to know which type of SIBO you are suffering from because treatment can differ between the two types; however in a recent post by Dr Chris Kresser, he suggests the best treatment is to aim to remove both archaea and the bacteria from the SI to gain the best results.

Testing

Lactulose Breath Test
This type of testing for SIBO requires a simple and non-invasive breath test that measures hydrogen (H) and methane (M) gas that is produced by the bacteria in the small intestine (humans don’t produce M or H). Patients will usually follow a 1-2 day preparatory diet that aims to remove as much of the food that would feed the bacteria. On the day they will have a baseline breath test, then given a sugar solution drink of glucose (or lactulose). Humans can’t digest or absorb lactulose, only bacteria have the right enzymes to do this. Their breath is then measured to see if they react to the sugary drink. If there is an overgrowth the breath test will show hydrogen and/or methane. The way it works is that gas is diffused into the blood then the lungs where it is expelled in the breath. This type of test is useful as it can diagnose an overgrowth in the distal end of the small intestines however the disadvantage is that it is not as accurate as a glucose breath test.

Glucose breath test
This test is more accurate and successful in diagnosing proximal overgrowth. The disadvantage is that it can’t diagnose distal overgrowth occurring in the latter 17 feet of the small intestine which is thought to be more common.
Both humans and bacteria absorb glucose and in humans it is usually absorbed within the first three feet of the small intestine. If hydrogen and/ or methane gases show during this breath test it’s a reflection of an overgrowth in the proximal / upper end of the small intestines (within the first 2 feet). This test can be carried out at home or in a clinic and is usually performed after a 1 day special diet and a 12 hour fast.

Digestive Stool Analysis Testing
I personally had a comprehensive digestive stool analysis taken which picked up my small intestine bacterial overgrowth. It was done through my private specialist doctor who also interpreted the results for me. The lab that was used was Genova Diagnostics Europe. They also test for parasites too. I know that they send out test kits (you will have to contact them directly for prices), but if you decide to take this option, you will need to find a doctor who will interpret the results for you – unfortunately the NHS won’t do this for private test results!

Treatment
This is the tricky part because the NHS has a different approach to say private or holistic doctors. Information suggests that they usually look to find what might be causing it, e.g. is a person producing enough acid, do they have Crohn’s or have they had surgery. However NHS testing can be limited they might not be able to find out the reason. If the cause is identified and it’s possible, it will be corrected and they will use antibiotics to help reduce the numbers of bacteria. To help prevent resistance or side effects antibiotics will be rotated (also pulsing with four weeks on, four weeks off). They may refer a patient to a dietitian as they recommend a diet change such as reducing carbohydrates.

Holistic and Private Doctors may use a variety of the following:-

Diet – Most private / holistic doctors will recommend a diet change; this can be a combination of elimination diets to help identify which foods may be adding to your issue. Some foods are inflammatory and can aggravate the problem and diets such as clean eating (removing junk foods, foods which are damaging to the gut or are carby/ sugary and likely to feed the problem) or low carb/ ketogenic diets can help reduce carbohydrate foods.

Digestive supplements –If a person has low stomach acid then it would be likely that digestive enzymes, bile acids or supplements such as Betaine HCL would be recommended to help to gut to digest foods properly. Take a look at this article which explains this in more detail.

Supplements – there are many supplements about that can be taken to help SIBO, they range from those that help to fight the bad bacteria, those that help promote the good gut bacteria, those that feed the good bacteria, those to help increase gut mobility and those that help fight other issues that may be contributing such as yeast/ candida.

Below are just a few examples that I have read about:-

5-HTP is recommended for a short period to help serotonin levels in the gut, but they shouldn’t be taken if you take medications that modulate serotonin (such as those used to help mental health issues).

Triphala is an Ayurveda herb that helps increase gastric emptying, gut peristalsis, and increases gut muscle tone.

‘Kill’ supplements such as cinnamon oil, oregano oil, allicin (garlic extract) and olive leaf extract. I came across many of these when looking at natural treatments for Lyme and they tend to be used as they are a lot kinder on the stomach and aren’t as detrimental as antibiotics. They have natural antibacterial properties and some of these choices don’t kill the good bacteria – only the bad. Olive leaf extract and oregano oil do however kill some of the good bacteria so when considering them for treatment you may want to do a bit more reading.

Fermented foods – these can help establish a good environment in the good for the types of bacteria that we want also making it inhospitable to those we don’t!

Probiotic’s – they help the ‘good guys’ to flourish, it’s always worth investing in a good quality product rather than a cheap one. Also check how well the probiotic performs – research has shown that some (even big brand) probiotics don’t reach the gut alive or they are lacking in the number of bacteria they boast to have. This article from the daily mail will help you to chose which of the brands to chose from.

Soluble fibres – these are extremely important as they help to feed the bacteria that we want to keep.

The Gut Health Protocol

Just a few weeks ago I came across a book called ‘The Gut Health Protocol’ (TGHP); I had downloaded it onto my kindle and it was so good that my husband ended up buying me a hard copy. It’s full of information on gut health and the ways to treat it giving a natural approach to healing SIBO, intestinal candida, GERD, gastritis, Helicobacter Pylori (H.Pylori), leaky gut, histamine intolerance and Eczema (to name a few!).

The unusual thing is that this book is not written by a doctor but by a man who suffered for years with gut issues and ended up self-treating. Now I have to add that although it’s not written by a medical practitioner It IS jam-packed with research and it even includes all the links to the research that the book is based on. John Herron who wrote the book calls himself a ‘meta- researcher’ – he trawls through all the research studies/ journals , reading them, digesting them (‘excuse the pun!) and then explaining what they mean/ what their outcomes were.

To give you an idea of how much background work has been done, the book includes over 1,200 published scientific studies! The book includes information on SIBO (types D and D), Intestinal candida, ileoccal valve, fructose malabsorption, leaky gut, GERD, acid re flux, heartburn, Helicobacter Pylori, IBS, constipation, Inflammatory bowel disease, Histamine Intolerance (HIT); It also discusses the types of diets that are useful for these conditions, the types of supplements that can be used for the various symptoms (many people with SIBO will also have other issues like intestinal candida or histamine issues). This book gives you all the information you need to treat the various issues that you have.

The protocol
TGHP is basically a three stage protocol;-

1. Kill off the bacteria/yeast that you don’t want
2. Help heal the gut
3. Maintain good gut health.

It has a basic protocol to follow which you follow and adapt to work around your issues/needs.

Firstly there is the diet – a low FODMAP and low carb diet is recommended as part of the basic protocol, but if you have other issues such as an auto immune condition like I do, you would also follow an AIP diet (auto immune protocol).

Then there are the ‘kill’ supplements; there is a list of 14 different ones to choose from. These will also be based on your needs, for example some of the supplements can cause issues with some people especially if they have histamine intolerance. By having a variety to choose from it means you can pick which of the ones suit you the most. John explains each and every supplement in the book so you know the pros/ cons of each one.

Also during the kill stage, depending on your gut issues you may need to add in further supplements to help kill other pathogens that may be at work. For example, if you also suffer from intestinal candida or parasites, then you will need to add in supplements to help kill these off too. Again, you don’t have to do any guess work; the book lists all the supplements that are recommended for each issue. All you do is pick which ones you think will suit you best.

Once you have completed the kill stage, you then move on to the heal stage where you start to take supplements to help heal the gut and to help the good bacteria to flourish. Again, it talks you through each step and explains each supplement recommended.

The final stage is what you have to do to maintain a healthy gut and prevent your gut from relapsing or regressing to its previous state which allowed the bacterial overgrowth to occur.

To help you on your journey there is a Facebook group dedicated to the book that you can join. Its run by John himself and he is on hand to answer any questions you may have. You can join the group even if you haven’t bought the book, but in order to follow the protocol you need to buy it!

Now I haven’t read the WHOLE book but I have read over half of it and as a result of reading it, I am now following the protocol suggested in the book. As I have auto immune issues I am also following an AIP diet (in addition to being ketogenic), as well as being Low-FODMAP as the book suggests. I will try to keep my blog updated on how I get on with this protocol but for the most up to date information including recipes, meal ideas and general day to day keeping’s you can follow me on Instagram, Facebook or Google Plus.

As a result of starting this protocol I will be sharing two more posts that are related, one will be about the Auto Immune Protocol diet (AIP) and another for the Low FODMAP diet.

Please Note
I have tried to be as accurate as possible with the information I have provided, but I am not a medical professional therefore I would always advise you to seek medical advice if you are suffering from any of the mentioned conditions / having other issues. I share my experiences in order to help others who may be going through similar experiences. I have listed below the websites and literature that I used to help me understand SIBO – you may find them useful too.

Information Sourced

The gut health protocol, John Herron, Second Edition – Available from Amazon (UK and Worldwide)

Chris Kresser – SIBO and Methane – whats the connection?
https://chriskresser.com/sibo-and-methane-whats-the-connection/

Daily Telegraph – Probiotics – how each fared and what they contain
http://www.telegraph.co.uk/news/health/news/11091887/Probiotics-how-each-fared-and-what-they-contain.html

Fix your gut – SIBO methane or hydrogen dominant, what’s the difference

SIBO: Hydrogen, Hydrogen Sulfide, or Methane, What Is the Difference?

Genova Diagnostives Europe – https://www.gdx.net/uk/
Genova USA – https://www.gdx.net/

Hollywood Homestead – treating SIBO (part 6), Hydrogen Vs Methane SIBO

Treating SIBO (Part 6): Hydrogen vs. Methane SIBO

Huntington College of Health Sciences – Digestive Enzymes

Click to access Digestive%20Enzymes.pdf

Jill Carnahan – 6 signs SIBO might be root cause of IBS
http://www.jillcarnahan.com/2014/05/16/6-signs-sibo-might-root-cause-ibs/

SIBO Testing – http://www.siboinfo.com/

The Daily Mail – Think you’re bloated, IBS
http://www.dailymail.co.uk/health/article-2089942/Think-youre-bloated-IBS-It-just-Small-Intestinal-Bacterial-Overgrowth-easier-manage.html

The Gut Health Protocol
http://www.theguthealthprotocol.com/wp/summary_gut_health_protocol/

WebMD – digestive disorders, small intestine bacteria SIBO
http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo

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Chronic Lyme Disease – Everything you need to know

 

Everything you need to know…
Ok, firstly I have to confess, this is not EVERYTHING you need to know about Chronic Lyme disease, but it’s close-a-bloody-enough! If you have just been diagnosed, know someone who has been diagnosed or think you may be suffering from it, then this article will help you. It explains a little about what it is, how the NHS view it, types of treatment and all the other bits in between.

Lyme disease
You may have heard a lot recently about Lyme disease, it’s been talked about a lot – from Avril Levine (Pop singer) to John Caudwell (billionaire business man) and 11 members of his family, there have been interviews on the telly and articles in the newspapers about people who have been diagnosed with the life changing illness. It’s as a result of this media coverage that I decided to look into it and have since been tested and diagnosed with chronic Lyme disease!!

Now if you’re new to my blog, you’ll know that when I started out blogging I was adamant that I would refrain from talking about my health issues because I wanted my blog to be my outlet, a distraction and somewhere I would feel ‘normal’ again. That said, I have gone on to write a few small articles that are health related because I realise that some of the information that I learn along the way could be helpful to others – especially those who may be going through similar symptoms.

My story – Recap
If you haven’t yet heard my story I’ll give a brief recap but you can read the full article here. Basically over six years ago I was diagnosed with Myalgic Encephalopathy (known as ‘ME’ for short but also known by the name Chronic Fatigue Syndrome – CFS) and was pretty much told (by the NHS) that there was little that could be done about it. I have been ‘taught’ how to learn to live with the condition and that was that (yep it was utterly useless and massively unhelpful!). Fast forward to 2013 and in the late October I was (really lucky) to get an appointment with a private specialist who treats ME (although she prefers to refer to it by the name Chronic Fatigue Syndrome) and I have been following her treatment protocol ever since.

Now the thing with ME/CFS is that it’s not quite a diagnosis as such, it’s really an umbrella term or a bracket where doctors ‘place’ you when they can’t find any else wrong with you (on the grounds that you ‘fit’ the ME/CFS criteria), so symptoms can vary from person to person. They (the NHS) will assure you that your blood work is fine and possibly that you are healthy!! The Specialist that I see doesn’t treat the named condition as such, she treats the patients individual symptoms based on in-depth medical questionnaires, blood tests, saliva and stool samples. So for the last two years I’ve been having thyroid and adrenal treatment, mitochondria support, nutritional support for deficiencies, antibiotic treatment for a bacterial overgrowth, including following a specialized diet (similar to a Paleo diet but tweaked based on long-term research by said doctor) which helps with hypoglycemia (which I also have). I’ve also experienced a ketogenic diet too (which you can read about here) to help manage a number of my symptoms but now remain low carb and high fat.

I have also had to learn how to pace, learn ways to deal with stress / emotions, follow a strict bedtime routine (also known as good sleep hygiene), remove chemicals from my life and beauty regime (read about it here) and learn to understand the individual symptoms that I am dealing with (the hardest thing to do when you have brain fog and cognitive issues!). So as you can see, it’s been a pretty tough 2 years for me and yet it seems I am only just beginning – because two weeks ago I tested positive for Lyme disease. So now I am awaiting a treatment plan, which although it’s a lot for me to get my head around, I’m looking forward to the next stage of my journey!

Why I tested for Lyme?
After seeing so much media coverage about Lyme I decided to do a little reading into it because I didn’t really know what it was (other than you had to be bitten by a tick) and thought it was a good idea to ‘rule it out’. However the more research I did the more it seemed possible for me to have it (prior to falling ill, I had joined a ramblers association and began walking 5-10 miles on the weekends that I wasn’t working). I found a questionnaire by Dr Horowitz (the link to this is near the bottom of this article) which I answered and it was when I got to the end (and calculated my score) that I began to realise that I would need to look into testing. My next stop was to answer two short questionnaires from Armin labs – it was a ‘tick list’ for symptoms which you fill in, send to Armin Labs in Germany and based on your answers, they suggest which blood tests you need (there are different tests for the different co-infections, which are common with Lyme – the link to Armin labs and their two questionnaires are also shown further down this article, near the end).

So I filled these in, emailed them to Armin then decided to go through my GP for an NHS Lyme blood test (which are so incredibly unreliable that I wasn’t expecting much!). No surprise, it came back negative and my GP’s office told me ‘no you don’t have Lyme you are fine, no further action needed’ – ha! The ‘main’ test for Lyme is an ELISPOT and a CD57 – together they are able to detect if Lyme is present (it’s extremely accurate). So this was my next step, once Armin had emailed me back with a list of suggested tests (based on my symptoms), I decided to start off with the ELISPOT and CD57 and I REALLY have to give credit here to Armin Labs, because I had the bloods taken on the Monday (By my GP Nurse, which I had to pay for!), they were collected the same day and the by the Friday (4 days later) I had my results! It was a bitter-sweet moment, because it was the missing puzzle piece I had been searching for and it now means I can move on the next phase of my treatment.
NHS

Just like ME/CFS there are discrepancies between treatment, research and the long-term effects of Lyme especially between the NHS and private specialists and doctors who have actually had experience/ bothered their ass to do some research into it. It’s not just here in the UK that it’s like this – there are places in the US that ‘don’t believe’ the disease can be long-term (crazy huh?). For example the NHS website will tell you that there’s no such thing as “chronic Lyme” because they ‘don’t believe’ it exists. What they DO say however is that “A few people with Lyme disease go on to develop long-term symptoms similar to those of fibromyalgia or chronic fatigue syndrome. This is known as post-infectious Lyme disease. It’s not clear exactly why this happens, but it’s likely to be related to over activity of your immune system rather than persistent infection”.

There are plenty of research documents and articles that have studied the Lyme infection and it proves that it is an active infection and not an ‘over active immune system’ but it seems that NHS Doctors tend to be stuck in this mind-set, mostly because they are restricted by NHS rules and regulations which constrain them, or by a simple ignorance to Lyme Disease. All independent doctors will treat Chronic Lyme as an active infection; however the approach to treatment protocols will differ from one to another. The advantage however of independent doctors is that they have researched Lyme and now there are a few blood tests that have been developed that can detect the bacteria in the body YEARS after a person has been bitten (science is great don’t ya think?!) Now if that doesn’t get you thinking, I don’t know what will! I could go into detail and riddle your brain with the different perspectives on Lyme but rather than do so, it’s easier to refer you to some places that you can read up about it and make up your own mind.

Independent Research
When I say ‘Independent research’ I basically mean any research done on Lyme and the bacteria Borrelia that has not been carried out by the NHS. The information I’m about to give is taken from work by Lyme specialists all around the world – and most of it will be based on research found in the USA. The reason for this is because Lyme was first discovered in 1975 in a small town (named Lyme in Connecticut) which it was named after. It was originally mistaken for juvenile rheumatoid arthritis but was later elaborated on in 1981/82 by Willy Burgdorfer.

Lyme disease is caused by a particular kind of bacteria known as spirochetes. They are the most ancient type of bacteria on earth and although it looks like a tiny worm, the word spirochete literally means coiled hair and represents how the bacteria behave. Once infected, the bacteria literally corkscrews its way into tissues and areas they want to colonise. There are around 14 types of Borrelia (which is the scientific name for Lyme) but there is thought to be three main types that are considered to be the cause of Lyme and these are Borrelia Burgdorferi, B. Afzelii and B. Garinii. There are other species of Borrelia that have been identified, as well as subspecies but usually when talking about Lyme it’s one of the three listed above.

The bacteria commonly move into areas of the body where it colonises and these include the aqueous humor in the eye, the collagenous tissue around the knees, the skin or the heart tissue. Borrelia is very unique as they possess unusual features that are more often associated with more complex non-bacterial like forms. They also behave more like a parasite because of the way they metabolize and all nucleotides, amino acids, enzymes (nutrients etc) must be scavenged from their hosts. They also have the flexibility to rapidly rearrange their gene structure in order to hide from antibiotics and fit better into a variety of hosts (animal of human) as well as avoiding the host’s immune system. They have also been found to adhere to culture endothelial and epithelium cells, differentiated natural cells, brain cells and glial cells – typically living deeper within tissues that any other kinds of bacteria. They can move much faster in viscous material like collagenous tissues than they can in blood!

Independent research suggests that Lyme spirochetes are passed not only through tick bites but can be passed by infected people into breast milk, tears, semen and in urine. Babies have been infected through their mothers; however there has been little research on it so not enough is known. There is also research and evidence that suggests that ticks are not the only culprits but biting flies, mites, and mosquitos are also capable of transmitting the disease.

There is also evidence to suggest that the three stages of Lyme can differ from person to person and is likely to be why different doctors use a variety of treatment methods. Stage one is said to be early, when it occurs in days or weeks after initial infection. This is when there has been very little spread of the spirochetes and only a bull’s eye rash appears (if it does appear). Stage two is early – disseminated when it occurs weeks to months after infection and is when the disease has begun to spread but not yet become chronically entrenched. Late (or stage three) is months to years after initial infection and the disease has penetrated a great many parts of the body and established itself as a chronic disease. However the progression of the disease is different for each infected person and studies have shown that Lyme spirochetes are already present in both the aqueous humor of the eye and in the central nervous system within just days of infection!

There is literally tons of research that goes on to explain many of the symptoms from Lyme. For example it can go on to cause arthritis, infection of the central nervous system, physiological changes in the neuroborreliosis (headaches, migraines and stiff necks), heart issues (Lyme carditis), eye problems such as ocularborreliosis and otoborreliosis, immune system issues and Herxheimer reactions – the reasons all point to the ways in which the bacteria interfere with the normal functioning of the body and how it infects the various tissues, cells and so on. I could go on to explain in more detail but the truth is its way too much for me to get my head around and it’s really in-depth stuff! The main point I want to make is that all this research suggests that the NHS is wrong and long-term Lyme is not simply the immune system ‘over reacting’ – it is way (way) more than that!

What is Lyme and what are the symptoms?
So what are the symptoms of Lyme and how do you get it I hear you ask? Well, you catch it from ticks. Ticks are tiny little insects and are commonly found in very rural areas (woodland or heath land) where there are cattle and/ or dear. Some areas are considered more of a danger zone than others. Not all ticks carry the Lyme Borrelia disease; it’s only those who have bitten other animals that are infected with it – causing them to become infected, so when they bite a human they pass the disease on. Many people ask how could they get bitten without knowing and the answer is that the ticks are so very small they can be missed. Ticks go through three growth stages (Larval, nymph and adult), when they are Nymph stage they are so tiny – about the size of a pin head. Not only would it be really difficult to notice if one became attached, their bite is painless and you’re unlikely to feel anything. There can be the tell-tale ‘sign’ of a red bull’s eye rash (a red rash that takes on the appearance of a bullseye) but not everyone experiences this. The NHS say that if it’s detected early on it can be treated effectively, but if treatment is delayed (which is often the case as people don’t realise they have been bitten), the person has a risk of developing severe and long-lasting symptoms.

NHS Symptoms list
The first hand symptoms a person will experience include the tell-tale rash, flu-like symptoms, tiredness/ fatigue, fever, headaches, chills, stiff neck, muscle and joint pain. What’s even more worrying are the long-term symptoms that occur later if it’s untreated. These can develop anything from months the years later!

They include:-

  • Pain and swelling in the joints (inflammatory arthritis).
  • Problems affecting the nervous system – such as numbness and pain in your limbs, paralysis of your facial muscles, memory problems and difficulty concentrating.
  • Heart problems – such as inflammation of the heart muscle (myocarditis) or sack surrounding the heart (pericarditis), heart blockage and heart failure.
  • Inflammation of the membranes surrounding the brain and spinal cord (meningitis) – which can cause a severe headache, a stiff neck and increased sensitivity to light.So as you can see, there are some pretty serious symptoms there and those infected usually don’t just suffer from one or two of these symptoms, it’s a cocktail of them so life can be pretty crappy to say the least!

Herxheimer response
One thing not mentioned above is the Herxheimer response or Herx for short and also known as a ‘die off’. The Jarisch-Herxheimer reaction is named after Adolf Jarisch and Karl Herxheimer, two dermatologists who first discovered the reaction when treating patients with antibiotics for syphilis. It is the body’s reaction to endotoxin like products released by the death of harmful micro-organisms within the body during antibiotic treatment. Put in simple term it means that as bacteria/ germs are killed off by antibiotics, they leave behind debris and the body struggles to remove them quickly enough from the body. Herxing in chronic Lyme can be really (and I mean REALLY) problematic as it can cause fever chills, hypotension, headache, tachycardia, hyperventilation, flushing, myalgia (muscle pain) to name a few! As a result it is important to detox regular when taking antibiotics for Lyme because it can help prevent the toxins from building up. Below are a number of detox solutions that you can follow to help, you may have to combine a few methods or try different ones to see what works best for you.

Testing
The problem with Lyme is that many people can be suffering from it and not even know! The NHS often talk about the ‘bulls eye’ rash which occurs after a tick bite (from an infected tick) however only 1 in three people (UK stats) will have this symptom. In addition to this, NHS testing is so incredibly unreliably that a ‘false negative’ is a frequent occurrence. For example the NHS uses an EIA or ELISA (Enzyme Immunoassay or Enzyme linked immunosorbent assess) which looks for antibodies to the bacteria that cause Lyme disease (known as serology). If antibodies have not yet developed sufficiently its possible for these tests to show as negative despite an active infection. A false positive can also occur if a person has had Lyme for some time. The reason for this is because by this point the infection will have taken ‘hold’ and can hide within the body (inside cells and under bio films – coatings that help to protect it from attacks from the anti -bodies or antibiotics). The antibodies eventually stop ‘fighting’ the bacteria as the bacteria hides, there for there would be no antibodies in the body to detect! Only if a person has a positive EIA or ELISA test will the NHS carry out a second blood test called an immunoblot or Weston blot.

As a result many people go on to have private testing which is much more reliable and it tests for much more than the antibodies! For example Armin labs carry out a whole range of tests including the ELISPOT which is so sensitive it can detect bacteria levels as low as one cell in 100,000! It’s between 20 and 200 times MORE sensitive than a conventional ELISA, and also it also detects the secreted protein from the bacteria.

Where to go from here?
I’m not suggesting everyone with a health condition or a diagnosis of ME go get tested for Lyme but it is something that is worth considering if you live in an area where there is a high risk, if you partake in activities or sports that mean you spend a lot of time in woodland and country side surroundings or if you remember having a rash at some point but didn’t think anything of it (this is very common) If any of these points strike a chord with you then it’s worth considering (and when I say consider – I mean you also need to consider all the factors). For example you also need to look at the following – do your symptoms match up to those listed for Lyme? What is your health history like? Can you trace back through your history and roughly identify a time when you began getting sick? What other routes have you been down or already tried? Now all of these are questions you need to think about before deciding whether you should be tested for Lyme and if you have a good GP, private medical or natural health practitioner it’s always worth talking to them and seeing what they think, because they will already have your details / medical history information from when you first started seeing them. If you don’t have someone to discuss the matter with, you might want to think about finding someone (someone who is qualified, comes highly recommended or is familiar with your named health condition or issues). Yes, it will cost, but in the long run it could help you get to the bottom of your underlying issues.

Take my journey as an example – treating ME/CFS is very much trial and error because there can be so many issues – thyroid, adrenal, gut, etc. So it’s about working your way through, treating each different element. As you work through them, you should start to improve, unless you have yet to find the underlying culprit – the ‘thing’ that is holding you back. Last year, when I had still not improved, I had a comprehensive digestive stool analysis as it was the next logical test for me based on my medical history and it revealed gut dybosis (also known as small intestine bacterial overgrowth). I had thought at the time that this was the ‘missing piece’ but a year later – having been treating this aspect, my health hasn’t improved. So again, back to the drawing board, it was about looking for the next logical step to take to finding what was preventing me from improving.

It was after seeing some high-profile instances of Lyme on the TV recently (and seeing how similar some of the symptoms were) that got me reading up about it. I tried to think of a time when I would have come into contact with a tick (when I was a rambler) and worked out the time scale I had joined my local ramblers. The time scale fitted – it was within a few months after I started rambling that I began getting sick! So as you can see – it all seemed to fit for me and that was my reasoning for getting tested for Lyme. It might be that there may be other things I need to target in order to improve (and this might not be my ‘missing piece’) but until I start treatment I won’t know, but either way, knowing it’s a factor means I can treat it.

Check list
It’s always worth ruling it out as a factor, which is what I did – except I happened to ‘rule it in’.
Once you make the decision to consider Lyme testing I would say to do the following things

  1. Take the Horowitz questionnaire – it can help you recognise whether you are a high risk or not.
  2. Fill in the questionnaires from Dr Armin and send them off to their lab. In a few days they’ll get back to you and advise if you are displaying symptoms and will suggest tests that they think you should have. NOTE if you have co-infections (which are really common) the lab will recommend you get tested for any co infections that you may be displaying symptoms of. I didn’t get tested for co infections, it’s something I may have to consider, but my initial aim was to rule Lyme in or out so I did the ELISPOT and CD57.
  3. Consider going to your GP and being tested with them – it may come back as negative but it’s always worth a try!
  4. Consider private testing.
  5. Treat yourself – now this is the tricky bit; if you go for private testing you’ll need a doctor to interpret your results and the NHS won’t get involved with interpreting a private test so you’ll need to pay someone privately. If you don’t have the finances for this you can consider treating yourself. Now I know that sounds a bit risky but the fact is this – you can’t buy antibiotics or certain medications so it’s unlikely you will do yourself any harm, but you CAN treat Lyme with herb protocols which have shown to be effective. To do it this way (and many people do – in fact some people herbally treat for Lyme if they suspect it and can’t afford testing!) you will need to do your own research, which isn’t as difficult as it sounds. You can join Facebook groups and forums where other people are doing the same. You can also purchase books written by other people who themselves have overcome Lyme. Although herbal treatments are relatively safe, always take care when using them – make sure there is no interaction with any medications you might be taking and check the dosage. If you can’t find the information out yourself you can always ask at your local health store. It’s easier if you follow a protocol from a book as it will have all the information you need regarding dosage, interactions and so on.
  6. Purchase books – this is useful whether you self-treat or not, because it can help you understand what going on in your body and the hows, whys, and wherefores!

Links
Horowitz Questionnaire – the best way to get this is to google ‘Horowitz questionnaire’ and it will come up in the search.
Armin Labs – You can find all the details you need (the co-infections checklist and symptoms check list on their website)

Treatment
The treatment for Lyme is usually simple if you have recently been infected and know so. You will be given antibiotic tablets, capsules or liquid, usually for up to about four weeks. If your symptoms are particularly bad the NHS will refer you to a specialist to have antibiotic injections (intravenous antibiotics). The tricky bit is if you have had the disease long-term – because the NHS doesn’t agree that chronic Lyme exists! So that means that many people tend to either self-help (as mentioned above) using a variety of herbs or go through private doctors to get specialised treatment.

The difficulty is if you didn’t know you were bitten and have now found out (months or years later!) you will be considered as ‘stage 2’ or stage 3 = chronic Lyme which means the infection will have already taken over your body. That makes treatment a lot more complicated as you will need to not only fight the infection, but deal with all the other issues that are a result of the disease e.g. such as thyroid or adrenal issues, gut problems and arthritis to name a few!

Antibiotics
One common treatment that doctors will recommend is antibiotics, but there ARE people who have managed to improve without taking these (but they tend to take a lot of the alternative solutions such as a combination of supplements and herbs). There are a whole range of antibiotics that doctors will use for treating Lyme and it will all depend on the doctor’s experience, knowledge of your medical history/ current treatment protocols and what your symptoms or co infections are. I was going to list them but there are just so many and in addition to this, you need to realise that what one person may be able to tolerate another person may have difficulty with.

As Lyme hides in the body it creates what is known as a biofilm. This is a protective layer that helps protect them against antibiotics and other form of attack. Lots of bacteria do this and it can make killing them off very difficult. There are medications that are aimed at helping to break through these barriers. Sere Peptidase is an over the counter product (derived from silk worms who produce it to break down their cocoon as they emerge as a moth) which does just this but there are a number of natural solutions including apple cider vinegar, false black pepper or clove. Targeting biofilms is crucial for treating chronic Lyme otherwise the bacteria will remain coated from them and can continue to live in the body.

Low Dose Naltrexone (often referred to as LDN) is a prescription only drug which can be used in Lyme treatment. It was originally used to treat people with drug addictions as it blocks the reception of opioid hormones that your brain and adrenal glands produce. However in the 1980s Doctor Bernard Bihari discovered that it helped the symptoms of patients with a wide range of conditions, including Cancer, HIV and Aids and Multiple Sclerosis (MS). It helps by encouraging the body to produce endorphins and by stimulating the immune system, which can help reduce immune activity. The dosage is very small in comparison to its original use (for addicts they would use 50mg, whereas for Lyme its starts at 1mg and can be increased up to 4mg).

Supplements
Supplements are recommended to help support the body as it will be struggling to perform properly; they can range from multi vitamins, to more selected supplements to target individual symptoms.

Multi vitamins – help to quench free radicals and raise antioxidant levels in the blood and lipids.
Co enzyme Q10 – I take a more concentrated version called Ubiquinol. Most chronic Lyme suffers will have poor function related to the heart, stamina and resistance to infections. Taking this can help alleviate these issues.
Vitamin B – this helps with neurological symptoms
Magnesium – helps with tremors, twitches, cramps, muscle soreness, heart skips and weakness.
Acetyl – L Carnitine – this helps with heart and muscle function
Methylcobalamin (Methyl B12) – This is usually a prescription drug but you can purchase supplements of B12 – usually ones that you take sublingually (under the tongue). It’s always worth buying a decent brand of this, yes it’ll cost more but it will be much more worth it. It can help heal problems with the central and peripheral nervous system, improve depressed immune function and help to restore more natural sleeping patterns. It can also help with energy as well.
Glucosamine – can provide long-term benefits to the joints
Vitamin C – is important to help maintain healthy connective tissue. It can cause acid stomach gas and loose stools, so if you suffer with this after taking, lower the dosage and slowly work up to a level that suits you.
Vitamin D – many Lyme patients are D deficient; it can also help with normal immune and hormone function. It can also help diffuse body aches and cramps that are not responsive to magnesium or calcium supplements.
Probiotics – Kefir is a ‘yogurt like’ drink that you can make yourself really cheaply (both with dairy or dairy free). It’s full of natural probiotics and is one of the best sources to have as it has a whole range of strains of (good) bacteria. It’s recommended to help replenish beneficial bacteria (gut flora) as antibiotics can deplete them.
You can purchase probiotics, but you ideally need to (regularly) change the strain that you take. You will also need to check that they are dairy free etc. if you suffer from intolerances.

Herbs
Milk thistle – helps to support liver function
Reishi max – An enhanced extract from cracked spores of the reishi mushroom; it helps people with a low CD57count (below 60) as it has been shown to augment function of the natural killer cells as well as macrophages.
Cordymax – A well-known herb from Tibet, it helps to improve stamina, fatigue and enhance lung and antioxidant function. It also raises superoxide dismutase levels, important to prevent lesions in the central nervous system.
Andrographis – is recommended as one of the best primary herbs to use in the treatment of Lyme as it is anti – spirochaetal, enhances immune function, protects the heart muscle, is anti-inflammatory crosses the blood brain barrier and enhances liver function.
Cats Claw – An immune potentiator; it stimulates the immune system and is an anti-inflammatory, is an analgesic, helps with the central nervous system, cognitive impairments and arthritis and muscle pain in Lyme.
Japanese Knotweed – enhances immune function, anti-inflammatory for both arthritic and bacterial inflammations, protects the body against endotoxin damage and helps reduce Herxheimer reactions.

Other items
Alka seltzer gold taken with glutathione has been said to be effective in reducing an acute Herxheimer reaction, however I have heard that its (alka seltzer gold) very difficult to get in the UK.
Activated charcoal – If you decide to take this I HAVE to stress that it’s important NOT to take it with other medications or supplements. If you take it, wait for 2 hours minimum after you take any medications, and at least 4 hours before anything else that you take! The reason for this is because it helps to counter poisoning and will attract/ absorb unwanted substances, carrying them out of the digestive tract. The problem is – it can’t differentiate between supplements/ medication and ‘the bad stuff’ so it’ll take it all (but not if you leave enough time before and after taking it). A lot of people tend to take it during the early hours of the night/ morning when they wake up e.g. around 4am as it means you can go back to sleep and leave it to do its thing, then when you wake later in the morning you can take your medication as normal.

Detoxing
Colonic and home enemas have been recommended as good ways to help detox the body, but they are costly (a colonic has to be performed by a qualified practitioner) and it can be messy/ gross (enemas are something that can take time to perfect if you are going down the self-help method). It’s still worth investigating if you struggle to find any other solution that is suitable for you.
Dandelion – helps to neutralise endotoxins, helps to detox the kidneys and increased bile production in the liver (bile is the means of transportation for toxins from the liver to the colon)
Epson Salts – made from magnesium sulphate, it’s absorbed through the skin when taking a hot bath (or can be used as a foot soak). The magnesium acts as a muscle relaxer and the sulphur increases bile production in the liver (always remember to wash the body/ feet off after soaking so that any toxins released from the body are washed away).
Lemon water – lemon in water is an age-old tradition. Adding 2 whole lemons into one cup of water to be sipped over half an hours’ time will help cleanse the body.

Diet
I haven’t got my head around the ‘Lyme diet’ (so to speak) just yet because I am already trying to digest (excuse the pun) all of the other information I’ve listed so far. But from what I have read, it’s important to cut all sugar and processed food out of your diet. It also focuses on eating lots of food naturally high in probiotics (Kefir, Sauerkraut and Kombucha to name a few), eating to help heal the gut and eating a diet full of nutrient rich foods. It also suggests eating a diet rich in healthy fats as well as eating low glycaemic index foods. Now luckily for me I have already been doing all of this by eating a stone age diet (similar to a Paleo diet) as well as being Ketogenic (low carb and high fat). You can either click on the hyperlinks or search my blog for paleo or ketogenic and you’ll find a number of articles that discuss both of these ways of eating (plus a load of recipes – yay!). I have read that some people like to ‘juice’ as it can help keep the body alkaline, but I’ve not yet explored that avenue.

Books
Beyond Lyme Disease
Healing the underlying causes of chronic illnesses in people with Borreliosis and Coinfections – Connie Strasheim
This book is really helpful because it looks into the other symptoms that occur with Lyme that are not always treated. Luckily for me my specialist has been treating my individual symptoms (many of which are talked about in this book) so in a way I am already on the right path. To name a few topics, it looks at adrenal fatigue, nutrient deficiencies, environmental toxins, GI dysfunctions, Mould and Parasites.

Healing Lyme
Natural healing and prevention of Lyme Borreliosis and its Coinfections – Stephen Harrod Buhner
This was the first book I purchased after I had received my results, as I read some really good reviews on Amazon. It has a really well-rounded approach to treating Lyme. It not only explores the antibiotics aspect but it has a lot of details on the various herbs that can be used. It doesn’t just tell you what treatments there are – but it tells you the reasons why, how and the bits in between. It also gives details on how to take the recommended herbs, and this protocol is fast becoming the ‘go to’ method to use for the best results. Many other books and websites refer back to Stephen Harrod Buhner (sometimes called Harrod Buhner or the ‘Buhner’ protocol). I think one of the greatest points in this book is the explanation as to why herbs work long-term verses antibiotics (the general idea is that the body sees antibiotics as an ‘attack’ where as they don’t see herbs this way, so herbs are reported to sometimes have a more of a success rate). It also discusses the risk of contraindications and interactions between other drugs and other herbs.

Other books
There are a number of books that have been recommend to me by other chronic Lyme suffers which I have not yet got round to purchasing. I will list them so that you can look into them and read their reviews. Amazon is great for looking at books because you can sometimes read some of the book/ look at the chapters before buying it so that you can get a ‘feel’ for the book and whether it’s going to be suitable for you :-
Suffered Long Enough – Bill Rawls (He also has a natural/ herbal plan you can purchase called Vital Plan)
Freedom from Lyme – Bryan Rosner
Why can’t I get better – Doctor Horowitz
Herbal Antivirals (also by) – Stephen Harrod Buhner

End note
Now before you finish reading all this I have to apologise for it being so long! I know, I am sorry – but I found that many people who knew my story of ME were asking me about my diagnosis of Lyme and wanted to know how I had been tested, why didn’t I go to my GP and what my treatment plan was etc. It was getting a bit much having to repeat myself and it made more sense for me to gather what I had learnt myself and put it together into one document – that way I could direct people here. I still have so much to learn and I can only imagine what’s to come. As I progress through my treatment and explore new avenues I will try to keep my blog updated of things that I find particularly useful, but it will have to be ‘as’ and ‘when’ as I already struggle cognitively and rely heavily on my husband to help me put my articles together.
If you have found this helpful, think it’s a lot of poop or have some words of wisdom I would love to hear what you think (yep, I want the good, the bad AND the ugly!).

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