BREATHING

My recent improvement in health and energy levels has come directly from a rebreathing mask that I got in the Breakspear clinic in London. It has boosted the levels of carbon dioxide in my system, which were unusually low, and this in turn has had a positive effect on my wellbeing.

I have written multiple posts about this. Despite this, I wasn't clear on the exact mechanism of how increasing CO2 improved health and energy. A few months ago I met a guy in a setting totally unconnected to ME or health. I was to get in touch with him about another matter and he gave me his card, which had the term "Breathing expert" on it.

Naturally I asked him what this was. He explained that he has asthma, and has done some research into ways of managing the condition and helping him breathe better. He has now helped other people, teaching them how to breathe and explaining about how you breathe effects every function of the body.

There is a link here to the Buteyko Method, which was developed as a coping mechanism for asthma sufferers. It is all centred on carbon dioxide levels. The problem many people have is that we "over-breathe", in other words we are breathing too shallowly and too often. This doesn't allow us to absorb the correct amount of CO2 for proper functioning of the body.

I went to see this guy, K, a few weeks ago. He hooked up a cannula

to my nose, in turn connecting this to a small box-shaped device, which he plugged into the side of his laptop. Here he was able to measure, using software he had, my CO2 levels as I breathed. It appeared on the screen as I watched.

The optimum level of CO2 is 35mmHg (I don't know what this stands for), and I was consistently reaching around 30, though when I came in first I was down at 25, a function, K said, of me being a bit stressed. This was true, I had gotten lost looking for his house and was a bit on edge.

K said that he could let me have one of the CO2 measurement devices, and a copy of the software, so that I could monitor my breathing over a number of months. There is also a training function on the software, which aims to basically teach you how to breathe correctly.

I tried this training aspect when I got home, and have done it every day for twenty minutes, as advised. It is quite simple, you watch a little ball on the screen going up then down then up again at a slow, steady pace, and you match your breathing to the movement of the little ball. You breathe in when the ball is going up, out when the ball is falling.

All the time your CO2 is being monitored. The ideal level is to get over 35. During the training part, when I am following the advised rate of breathing, I find I am somewhere between 29 and 32. Interestingly, you can also monitor your CO2 at normal breathing rates. Without following the rhythm on the training programme, I am generally at somewhere between 26 and 28. So it is obvious that the breathing exercise does increase carbon dioxide.

It is interesting that the breathing training programme is set so that I actually breathe six times a minute. This sounds like an incredibly small number of breaths, but it is apparently the optimum for someone at rest. A lot of us overbreathe, breathe too often, the key, apparently, is to finish each breath completely, allow all of the air out of the lungs after each slow exhale, pause on the bottom before inhaling again.

It is tough at first, though does get easier. The idea is that the muscles that we use for breathing, which according to K are "smooth muscles", have to be trained and worked out like any muscle. The breath training allows the process to become automatic, done for long enough you should see your breathing becoming slower and more relaxed, with the attendant rise in carbon dioxide.

He also explained the exact function of CO2 in the body. As we breathe in, the oxygen is absorbed through the lungs and into the bloodstream. As the haemoglobin travels around the body with its oxygen, it meets cells that need oxygen for energy. A biochemical process takes place where carbon dioxide in the cell is exchanged for oxygen in the haemoglobin. The oxygen is then used, along with other things, to make glucose, which is the basic fuel for energy in cells.

Without sufficient carbon dioxide, this process cannot take place, and so energy is not produced as efficiently. Thus, CO2 is vital in the energy producing process.

I found all of this fascinating, as it clarified the bits and pieces of information that I got from Breakspear, and it put my own experience in some context. Since I began using the rebreathing mask, my breathing has definitely changed. I no longer get out of breath as easily, something I never really thought about before, I just thought it was an inevitable part of my ME. My breathing is also more relaxed now, and noticeably slower. I'm not sure if the breath training has had any effect on it yet, but the mask certainly has.

I have been doing the breathing training for two weeks now. K advised me to do it for three months, it is a slow process, apparently. The goal is to get my CO2 level up to consistently around 35, or even higher, and this is supposed to happen through regular practice. We will see, I will keep at it anyway. It is not going to be the answer to all my problems, but may be another piece along the road to improvement.

If nothing else with ME, you do learn quite a lot about human biology!

BREAKSPEAR 5: CHECKUP, AND THE DANGERS OF SELF OBSESSION

I went back to the Breakspear clinic this week, five months after I had last been there. I last wrote about it here.

It has been a rollercoaster five months, with a severe relapse, recovery, and then a certain improvement in my overall health situation. All of the ups and downs of the last few months have been connected to the rebreathing mask that I got from the clinic, and so I was curious to see what the numbers said was happening with my system.

The mask, which I now wear for at least six hours every night in bed, is designed to increase my levels of carbon dioxide (CO2). Oxygen levels are key in energy production and the proper functioning of the autonomic nervous system, but O2 is in turn dependent on a certain amount of CO2 in the system as a buffer or support. In my initial examination I was shown to have low levels of CO2, which meant that when I exerted myself, my oxygen levels dropped instead of rose.

I flew over on Monday to Luton airport, just outside London. I had a follow up appointment with Dr Shah, who is a neurophysiologist there in Breakspear. He attached sensors to me which measured different aspects of my central nervous system functioning, including O2 and CO2. Then he gave me a "challenge", telling me to inhale and exhale rapidly, six times in a row.

The last time this is when my oxygen plummeted, when it should have risen. My CO2 levels also fell during my first exam. This time, the same thing happened, though less so. The oxygen fell but less, and the same happened with the CO2, it fell, but recovered more quickly. So the basic story is that my autonomic nervous system is still dysfunctional, just less so.

And in the world of ME/CFS, this is what is counted as a win, progress. Still dysfunctional, just less so. The doctor gave me some advice when I showed him how I was wearing the mask. He told me that I needed to pull the straps that fasten it to my head tighter when wearing it, to maximise the amount of CO2 that is trapped in the mask, and so increase the amount I "rebreathe".

He also said that he had to confer with his colleague, Dr Munro, about what other actions needed to be taken to get my O2 levels up. He suggested that I may need an oxygen concentrator, and also what he called an "endothelial cell repair programme." I'm not sure what this last thing is, but I have to talk to Dr Munro herself in a few weeks to find out.

And that was that. There wasn't really much to the appointment, a confirmation that I was slightly improving, some advice and a promise of future treatment.

One of the more interesting parts of my brief stay in England was that I spent that evening in the Breakspear guesthouse. They own a medium sized house a few miles from the clinic, which they allow visiting patients to stay in for a reasonable fee. The house has a kitchen and common area. Some of the people I met there were there for a whole week, others for a month or more.

Again, like last time that I stayed, I was the only man in the house. This time there was a French lady, three Italian women and a German girl in her twenties. They were all being treated for some form of Multiple Chemical Sensitivity, and one or two for electro sensitivity. Breakspear do a lot with this, allergies, environmental medicine, treating people with unusual reactions to things.

The experience of being with all of these sick people, even for just one evening, was a mixed one for me. It got kind of oppressive, hearing people's stories, being around people who are so intensely conscious of their environment, who are so consumed by their condition.

One lady there had a sensitivity to wifi, and to mobile phone signals, as well as to other things. She had a helper that came in to cook her dinner when I was there as she wasn't able to. However, she did seem able to go around the house with a little device that detected phone and wifi signals, and to go up to anyone she suspected of having a device, and ask them to turn it off. I had a laptop with me, and had connected to a wifi hotspot in my room. She obviously detected this with her little gadget, and threatened to go into my room and switch it off herself if I didn't. She was very insistent, almost threatening.

Another lady had a sensitivity to traffic fumes. Before going to bed she asked all of us to close our windows in our rooms, so as to keep out any trace of fumes from the house. My room was at one extreme of the house, and hers at the other. All doors to all rooms would be closed at night, the rooms only connected by a narrow corridor.

The two reactions to me seemed extreme. It seemed to be symptomatic of the atmosphere of the place, where people were really invested in their illnesses, and delighted in talking about them. The first lady who was sensitive to wifi didn't actually feel any worse when I had my computer connected, she wouldn't have known there was a signal if she didn't have her little gadget. What's more, her room was downstairs, and mine was way up at the end of the corridor upstairs.

And the request of the second lady seemed to me to be unreasonable. As it happened I closed my window anyway, but one of the girls there had other sensitivities and felt better with air circulating, and sometimes liked to have her window open. Besides, the rooms were obviously considerably separated, and the doors were going to be closed all night. The amount of traffic fumes that could reach her there in her room, behind her closed door, was miniscule.

To me this kind of obsessiveness is easily bred in a situation where you have this dysfunction assailing you that you don't really understand, and which you have no control over. The requests for no mobile phones or wifi, and for people to close their windows, were clearly (possibly exaggerated) attempts to get some feeling of control over their surroundings for these women.

I should be more understanding of these motivations, having been through what I have been through for sixteen years. I once thought that mobile phone signals and wifi made me feel worse, though I now suspect that this may have been a mistaken belief bred by the terrible insecurity inherent in an illness that I couldn't control. I have recently got wifi into my own home here, after having used mobile internet before that, and feel no change at all in my state of health.

I have no doubt that those people I briefly shared living quarters with in Breakspear were genuinely ill, and did have sensitivities that were not easily explainable. Most of them reported having been told that they were "pazzo", Italian for "crazy", at one stage or another, another thing that many with ME/CFS can relate to.

One lady, the one who asked us to close our windows, told me that she basically lives in her car, as she cannot generally stand the environment of her home, full as it is with chemicals and electrical currents.

These are all people who are suffering. And this suffering can cause a certain obsession with your state of health, something I have experienced too. This obsession itself can become unhealthy, though, and cause you to act in ways that alienate people and leave you even more isolated. One thing I did notice was that most of the patients there talked at length about their own condition, but showed little interest in my own particular situation, and asked me few questions about my experience.

I was glad to get out of the Breakspear guesthouse, the atmosphere had become a little oppressive. It confirmed, if nothing else, my own personal approach to the condition, - which I am fortunate enough to be well enough to carry out - which is to only talk about it to people I know well, and who already know a little of what I have been through.

The fact is that sick people who are consumed by their illness and can talk about nothing else, are tiring and alienating to talk to. Illness, if we are not careful, can make us self-obsessed and tedious. I have been one of those people in my time, and am thankful that I have, for now at least, reached a stage where my life is not so overwhelmingly effected that I can't think or talk about anything else.

Others are not so fortunate, and it is difficult for them to know how to approach the whole question of what to say to whom and when.  Being that ill is heart-breaking, having your life ruined by illness is hard to take, especially when no-one can tell you why it is happening.

It is difficult to achieve that perfect balance between not talking at all about your ailments, and becoming obsessive about them. The problem is that, if you're not crazy before becoming ill with conditions like MCS or ME, having to live with them can easily take a toll on your sanity.

BREAKSPEAR 3: LIVE AND IN PERSON

 I travelled over to Hemel Hempstead this week, where the Breakspear clinic is based. Hemel is a small town about thirty minutes outside London, and the clinic is not far from the centre. I have already blogged about this clinic, here, and here.

Up until now I have had two consultations with Dr Jean Munro, but both have been by Skype, as I live in Ireland. I went over to England this week as Dr Munro said that she needed to examine me before prescribing me medication.

One thing I have found with Breakspear is that their appointments are quite punctual, the first appointments I think I have ever had with a doctor that have started on time. Dr Munro gave me a general examination, BP (which she said was low, 100/70), reflexes, eye, mouth, balance, breathing etc.

We then went on to discuss the treatment options. She prescribed for me an anti-viral, Artesunate, and an immuno-modulator, Immunovir, as there is evidence of Herpes 6 virus in my system. The clinic itself provides the medication, though it is expensive. The Artesunate costs £96 per month, and the Immunovir £227 a month, which comes to close to €370 a month for me.

She then brought up allergy testing again, which she mentions every time I talk to her, as well as Low Dose Immunotherapy, for my food intolerances. As always, I told her that that was not my priority, though she does really seem intent on pushing this treatment.

We then discussed the Far Infra Red sauna that they use for detoxification. They combine this with infusions of vitamins and glutathione, and it can be done every day for a week. I was quoted, for a week's treatment, over £2000, so I told her that I was putting this on the back burner for a while until I can see if I can afford it.

What I didn't tell her is that I have since bought myself a personal Far Infra Red sauna, a cocoon system from Get-Fitt.com. The idea behind this is that your body is heated at a deep level, you sweat and your metabolism is sped up in order to aid detoxification. I have written about the importance of having control here before, and having my own sauna gives me exactly that. I have control over when and where and for how long I have a sauna session. I can start off slow, as I have done with two minutes at 30 degrees, and build up gradually. Over a period of months I can slowly increase to 40 and then maybe 50 degrees, for fifteen, twenty, thirty minutes.

In Breakspear it would be very different. To make the trip worthwhile I would start immediately at at least half an hour and at a high temperature. I doubt if my body would react very well to that. So with my own sauna I can have the gradual increase that in the clinic would be impossible. I will blog more about the sauna in the coming weeks as I increase both time and temperature.

The final topic that myself and Dr Munro spoke about was one we had broached before. This was the idea of having a Baseline Autonomic Index done. I had rejected this idea before, as I thought I had enough to be concentrating on, but they said that they could fit me in the day I was there to have it done, so I thought I would go ahead.

The Autonomic Index is something that Dr Peter Julu has invented to give an overview of the workings of your autonomic nervous system, something that people with ME/CFS generally have great problems with. The autonomic nervous system involves blood pressure regulation, breathing, heart rate, perspiration.

I had the test done later that day. It is relatively painless, I lay in a prone position and had sensors attached to my torso and fingers and near my heart, and other measurers of my breathing and pulse. 

The most interesting part for me was when the doctor (another one, not Dr Munro) gave me a small challenge, and told me to breathe in and then out deeply six times in quick succession. Even though I was lying prone, I felt light-headed quite quickly. The doctor was measuring the oxygen and carbon dioxide levels, and saw something interesting.

What is supposed to happen is that when you do exercise or exertion, your oxygen levels should go up while you are exerting yourself. Then they should return quickly to normal. During the deep breathing my oxygen levels actually dropped.

More than that, my carbon dioxide levels dipped during the deep breathing, as they are supposed to do, though they took a long time to come back to normal, much longer than they should.

The doctor described this as a "double whammy", lack of both oxygen and CO2, which makes energy production extremely difficult, and goes a long way to explaining my lack of stamina. This is a common result in patients with CFS.

More importantly though, what can be done about it? Well, the results have to be compiled and assessed, and then a treatment programme can be suggested. The doctor wasn't very forthcoming on what that might be, but some people, he said, actually get an oxygen mask to breathe, to increase the levels of oxygen. He seemed to think that the situation is treatable, though that remains to be seen.

So at least I have things to be working on. I am going to continue with my own private sauna, building up gradually, and also begin the anti-viral medication. And then hopefully there is an accessible, affordable treatment option that comes out of the autonomic test.

And I can't help thinking about what I might gain from all of this. I wish I could stop thinking this way, but it is impossible. I am spending all of this money, going through all of this effort, throwing everything I have this summer at trying to make some progress in my health and energy levels. Something has to work, right? Just give me 5 or 10 percent, just something.

After all of this, if I am here in, say, December, writing about how nothing has changed, that all of the therapies have failed, that will be a very bitter pill to swallow. 

BREAKSPEAR 2: TEST RESULTS AND TREATMENT OPTIONS

I had a follow-up appointment with Dr. Jean Munro, in the Breakspear clinic,  this week by Skype. In the first appointment, which I wrote about here, she recommended that I have a number of tests. I have had the results of the various tests for a number of weeks, but was waiting for her to interpret them.

The first interesting result was that I have a very high level of IgM antibodies to the Herpes 6 virus. This, the doctor said, suggests the presence of this virus in my system. The notes from the lab on my results say that "results ≤29 may indicate over-immune response against herpes 6". My results were at 50.70.

IgM are antibodies that are formed by a "recrudescence" of the virus, and indicate that it is present in my system. Dr Munro said that in her opinion anti-viral treatment could help in eradicating this virus. She mentioned the anti-viral Artesunate, and also said that they commonly used herbal anti-virals for this purpose.

The next main area tested was ATP (adenosine tryphosphate). This enzyme is used to form ADP (adenosine diphosphate) and phosphate, which are major energy sources in the tissues of the body. There have been a lot of connections made between  the ADP/ATP conversion efficiency and CFS/ME. Sarah Myhill in particular works a lot with improving this system in the body, with supplements especially.

My results were bad across the board in this area. My ADP to ATP conversion rate was at 52%, anything under 60% is low. I also had a high level of blocking sites, in other words sites where this conversion from ADP to ATP can take place but is prevented from doing so for some reason. My level was at 26%, anything over 14% is abnormal. The notes at the bottom of my results summarised that I have a "very low whole cell ATP."

Doctor Munro then said that it was important to find out why this was happening, what was blocking the sites. She looked at my Mitochondrial TL protein study, another test that I had done. TL, (Translocators) according to the lab, are involved in the formation of ATP, and so in the provision of energy to cells. It showed up that I had a chemical, Nitrosamine, on these TL sites, that may be blocking energy production.

There was an explanation of Nitrosamine in the notes in the results from the lab. Apparently it is a chemical that comes from cigarette smoke, burnt food, rubber, and from bacon and processed meats, among other things. In the doctor's opinion it is possible that this pollutant is contributing to the breakdown in energy production in the body.

To treat this, she suggested a course of hyperthermia, using their Iratherm process. What happens here is that the body is heated from a light source placed under the patient. The light is filtered to take out UV rays, the rays that cause burning from the sun. The Iratherm heats the body on a deep level. This apparently mobilises fats like an aerobic workout, or like a sauna, and it is often in fat cells that pollutants and toxins are stored. The heat aids the excretion of these pollutants.

Hyperthermia, she explained, is something that the body will do itself, as in a fever, to aid to clear toxins, as the metabolism is speeded up and a lot of pollutants are excreted through sweat.

I was a little worried about the effect of such a therapy on me, and whether it could make me feel worse. She said that they don't find that people have bad reactions, that the treatment is tolerated fairly well. She mentioned that often between six and twelve separate treatments are necessary to have significant effect, though I could have four or five treatments over the space of a week.

What Dr Munro then proposed were infusions to help clear pollutants. These would be IV infusions of vitamin C,  B-vitamins or fats, which may act as a sump for absorbing chemicals expelled from the body. I would get these after each hyperthermia treatment.

And that's it, my treatment programme. Anti-virals, the Iratherm hyperthermia treatment and IV infusions to aid detox. She suggested other things, like Low Dose Immunotherapy for food intolerances, but I have heard quite a few bad things about LDI for me to have no interest in that. Besides, I figure that the intolerances are a function of a toxic atmosphere in my body, and if the other therapies have an effect it will help the food problems.

I have to make an appointment to actually go and see the doctor face to face, in their clinic in Hemel Hempstead, near London. She says she needs a face to face examination before prescribing medication. I am certain that I want to try anti-virals, but the hyperthermia and the infusions are another matter.

They sent me a quote soon after my consultation. The treatment would take place over a working week, from Monday to Friday, and would cost £2100, or €2600. This involves one hyperthermia treatment, and a series of IV infusions that contain vitamins, glutathione, B12, etc, a day. It works out at £95 per hyperthermia treatment, and an average of £350 per set of infusions, per day.

Of course if it works, it would be worth it. My problem is, as usual of course, that I lack basic knowledge about this treatment. I have only their word in Breakspear to take for the fact that this is of any use. They do quote some studies on their website, but it is always easy to selectively quote scientific studies to support your claim.

There was a doctor, Robert Gorter, who did some of the same stuff in Cologne a few years ago, and there was a lot of fuss about his therapy at the time. But the fuss quickly died down, I knew someone who went there and had no benefit, and the effectiveness of the treatment for CFS was soon called into question. He's still going, apparently, and still using hyperthermia to treat patients for a range of illnesses, though again it is impossible to know how much efficacy it has.

So I have to do some research, and make a decision fairly soon. It would be an enormous investment for me to take this on, and would leave me fairly short of funds in the future. I have no idea whether it is a risk worth taking, but I suppose the only way to find out is to do it. I don't know if I can face spending thousands more, with no benefit or improvement.

THE BREAKSPEAR CLINIC 1

The reason I started this blog was that, about three months ago, I started looking into getting treatment in the Breakspear Clinic. This is a clinic in the South of England that specialises in allergies and environmental medicine, including treating CFS.

I had read their website, but I wanted some first hand testimony from people who had actually been to see them and who had gotten treatment. The clinic is expensive, so before going I wanted an idea of what I was letting myself in for.

There was very little out there on the Net. I found the odd blog post, a few posts in forums, but little that would give me any real information.

I decided to go ahead anyway with an appointment with one of the doctors there, Dr Jean Munro. As I am in Ireland, they arranged it so I could have the appointment by Skype.

I also decided that I would start recording my experience with the clinic, for those who are coming after me and wondering whether it is worth spending all that money to attend Breakspear. A blog seemed to be the best way to do this, and so here I am. In essence I am doing what I wish someone else before me had done. It would have helped me a lot when I was trying to decide whether to go down the Breakspear route.

So far, my experience with Breakspear has been mixed.

I had to fill in a lot of forms before the first consultation, medical histories, symptom charts, medications lists. The consultation began almost on time, practically the first time that I have ever seen a doctor at the time of the appointment.

Dr Munro was sympathetic, asked me about the onset of my condition, what my major symptoms were, asked about my diet, what I was taking etc. There wasn't a whole lot to the consultation, to be honest, she eventually got on to what tests she would recommend, and we finished within half an hour.

And that's as far as I have gotten so far. The specific tests I have been recommended to get are as follows....

Priority 1.

Immunology profile

Comprehensive viral panel

Priority 2

ATP Profile

Cardiolipin

DNA Aducts

Translocator study

There was a third priority, stool analysis, and IgC food panel, that I am not going to do at the moment. They sent me explanations on all of the tests except the Cardiolipin, though in truth I am none the wiser. I am only really taking them at their word that these are worthwhile, productive tests.

The reason the two tests above are priority one is because they were what I asked for, I have never had any immune investigation or tests for viruses, and I wanted to get these done.

I have already had blood drawn for the priority one tests. I am undecided about the priority two tests as yet, my next appointment isn't until late June so I don't have to decide yet.

As I have said, my experience with Breakspear so far has been mixed. Initially I found the administration side to be less than efficient. I had to email them requesting that they send out the forms that I had to fill in before the first appointment. Then, before they actually sent me the forms, they emailed me asking if I had returned them.

When the arrangements were made, there was a little confusion on a number of levels. I had given them my credit card details, yet they emailed me asking for these details, as if they had mislaid them. They sent me contradictory information in arranging for the first consultation, though that was quickly sorted out.

They did facilitate me in enabling me to get the blood drawn here in Ireland and then send it to them next day delivery to get it tested, though when I received the kit all of the blood bottles had my name misspelled and I was down as female (I am not).

My biggest complaint with them though, is when it comes to payment for the tests. I rang them and confirmed that I wanted to do priority 1 and 2, and was quoted a price of £1100 or €1300. Before I even received the kit for the tests, they had taken the money from my credit card. They didn't inform me that they were going to do this, and it meant that I was over my credit card limit.

In fact they took my money three days before I even received the kit, never mind actually getting tests done. As we speak it will be another couple of weeks before I can arrange the second set of tests - if I do them - and yet they have had over a thousand euro of mine for nearly a month now. Charging the money to my credit card is by far the most efficient thing that they have done as yet.

I have read a little more about Breakspear since I went down this road, and one theme seems to be that they are a business first, a clinic second. That too is my impression. They are, in some cases, helpful when I have a query, though when I rang to complain about them charging me so quickly for the tests, they were utterly unapologetic. I have to say that I am not massively optimistic for whatever potential treatments that they propose, yet it is an avenue that I haven't explored yet, and so I feel I need to tick it off my list and give it a try.

I still suspect that I may end up spending thousands with no tangible benefit to my health. My big problem here is still lack of information. I don't know how useful those proposed tests are, and have no way of evaluating whatever treatment they will suggest.

I will update as and when I get any results or new developments.