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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2 thoughts on “Hyperbaric Oxygen Therapy for ME/ CFS & Lyme

    1. Hi Shaun,
      Thank you so much for your feedback – I’m sorry to hear that HBOT didn’t help with your pain. I am just about to share another post about a medicine called Low Dose Naltrexone – that might be something you could give a try? Research with MS and Fibromyalgia patients had good results. Alternatively you could try tweaking your diet? When I went AIP (Auto Immune protocol) I discovered loads of foods that I was eating that were making me feel dreadful. Whatever you try next, fingers crossed you find something that helps. Em x x x x

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