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.

TEETH AND GUMS, AND GOING BACKWARDS

I have had a problem with receding gums for the last few years, but it has recently - in the last two years - gotten a little more severe.

I take obsessive care of my teeth and gums, brushing and flossing and getting cleanings, but the gums have still continued to recede.

I have an idea that it is connected to my CFS. Any reduction in immune function can have knock on effects on different parts of the body, and can allow more bacteria growth in the mouth. Added to that is the fact that I have a dry mouth, which I first noticed after starting to take an anti-depressant, Lexapro, and which has continued with its replacement, SAM-e. Lack of proper saliva is a danger for all kinds of oral issues.

Another cause, I think, is steroids. I was taking Hydrocortisone for a year or two, and am at the moment taking Fludrocortisone, for orthostatic hypotension. Steroids of any kind, as I have learned, apparently thin the tissue of the gums and make it more vulnerable to recession.

I finally went to a periodontist - a gum specialist - last week. I found her very efficient and she gave off a knowledgeable air that was reassuring. Firstly she assured me that my teeth weren't about to fall out, which was a relief. On some of my teeth at the front there has been quite a bit of recession, and it does look scary, but she said that I had strong roots and teeth and they were not about to drop.

She also confirmed my suspicion that the steroids were damaging to gum health. She didn't tell me to stop taking the Fludro, but did question how much it was  helping me in general and whether it was worth it. My mouth, she mentioned, wasn't actually that dry, and that the dryness was unlikely to be causing the problems with the gums.

She said that surgery was an option to regenerate some of the gum, but that what she would really recommend is getting my teeth straightened. I have heard this before, I do have too many teeth in too small a space, and they are squashed in there at different angles.

Straightening teeth, of course, means braces. It was something that I really should have gotten done thirty years ago, but in nineteen eighties Ireland a visit to the orthodontist was a luxury that the vast majority of people couldn't afford. In fact, it probably wouldn't even have been mentioned as an option when I was young.

So now I am forty-one, and facing the prospect of wearing braces for a couple of years. More than that I probably will have to have a wisdom tooth extracted to allow this to happen. More fun! It's a good thing I have more or less lost my fear of dentists, or this all would be out of the question.

Of course none of this is certain. It is my decision. But it is clear that my squashed in teeth are worsening the recession in the positions where the teeth are more prominent, and that the gums get stretched when the teeth are misaligned in the mouth. It would certainly help the situation. I just have to see if I can afford it, and if I can stand the idea of train-tracks in my early forties.

There are other implications of the recession though. I have to decide what to do about the Fludrocortisone. It has certainly helped me a bit, though exactly how much I am unsure. It is probably about 5 or 10%, I find that I can be upright more easily with it, and standing is in general not such a strain on my system as without it. This is what fludrocortisone does, it helps maintain blood pressure, exactly what most people with ME/CFS have problems with.

It is a difficult dilemma. Continue taking the fludro and have maybe 5 or 10% greater activity levels, but also have gums that recede at an alarming rate, or have a manageable gum recession problem but lose that 5% or 10% that the medication was providing me with.

I have already cut the dose to half of my previous 0.1mg. I have already started to notice a difference in energy levels, and ability to be upright or stand for any length of time. Not disabling, by any means, but noticeable.

Of course 5% to most people isn't enormous, but to someone with such low levels of basic energy, any percentage point of loss or gain is significant. I have decided to give the steroid up for a while and see how I manage, but I am still annoyed at the thought that there is something out there that could, at least in the short term, improve my quality of life, but which is possibly not worth taking because of the side-effects.

After having established a certain level of activity in the last year or so, a level which is far from good but which is at least something, it is frustrating to know that I may have to take a step backward, as least for now. And on top of that, braces! 

CONTROL (AND THE LACK OF IT)

I rent a room in a shared house in my home town. I am the oldest person I know who does not live in a place either that they own, or that they inhabit on their own. At forty-one I am reduced to living like a student.

I live like this, of course, because I can't afford to live anywhere else. I work part-time, and so can't spend much on rent. I don't pay much for my medium sized bedroom, and the house itself is adequate, in a central area, with a good sized back garden. The kitchen and living room are basic, but have everything necessary.

So it allows me to survive. I can cope here, which is something. I have been here more than a year, and have constantly to deal with the lottery that is living with housemates. Before I got sick I lived with a lot of different people, in probably about fifteen different addresses in four different countries, in eight years of healthy adulthood. Little did I know that I would still be doing it fifteen years later.

So far I have been fairly lucky, no axe-murderers yet, though the guy who had been living here for four years when I moved in was a grubby, grimy person and never cleaned up after himself. He moved out six months ago and things have been less stressful since.

And yet it is never simple, sharing with strangers, no matter how reasonable you all are. There are always conflicts, always stressors, always things to negotiate.

And for someone with a chronic illness this is difficult, because the only way that I can manage my basic, everyday life is by minimising stress and trying to maximise the amount of control I have over my environment.

For example, I tend to avoid the people I live with on days when I am busy with work or when I am feeling low or tired, as I simply cannot waste energy making small talk. I imagine I appear somewhat rude or standoffish, but there is nothing I can do about that, and at this stage I have learned not to care.

So far, in the house, I have arrived at a stage where I can cope. I hardly use the living room at all as I find it cold and dark,  as it faces north. The kitchen I use regularly, for cooking and eating, but I spend most my time in the house in my bedroom, which has a TV, my laptop, a comfortable chair.

There I can control my surroundings, I don't have to talk to anyone if I don't want to, I can get the solitude I need after a half a day of work. I can rest when I need. I can watch what I want on television, and turn it off when I want. There is no other way I can live.

So in theory I have reached a stage where things are manageable, which is about all I can hope for with my current mediocre state of health and energy. That is, however, before we talk about Radiohead next door. Of course I don't mean that I am living next to the English alternative rock band, I am referring to a middle-aged man who, every day it's not raining, is out in his garden with his radio on.

And whatever angle the radio is at, the sound comes upwards and enters my bedroom - when I have a window open - as if it was there in the room with me. The radio is one of these ones with an incredibly tinny sound, piercing and squeaky, that is hard on the ears. And he tends to listen to a local radio station that only plays "classic hits" and that announces the death notices.

I find it very intrusive, and has shown me how much I value silence. The guy doesn't seem to work, and so is always around. Most every day I am out of the house for a few hours, teaching or running errands or visiting, but because my energy levels are limited I spend most of my time at home. And when I'm there I am in my room, where Radiohead's radio is, at least 50% of the time, assaulting me.

I have asked him to redirect his radio, or turn it down, and he did for a while but has gone back to playing it at the usual volume. The thing is that it is probably not that loud, and may not even bother most people, but it is insistent and positioned just so that the sound enters my room at maximum volume, and I am more sensitive to noise than most people would be.

And this is where I get back to the idea of control. I have reached a stage where I can control the majority of things in my environment, which allows me to cope. But when Radiohead turns his radio on, and leaves it on for the whole afternoon and evening, that is beyond my control. I can't just go out and do something else as I don't have the energy, and I can't adequately explain to him, so he might understand, that I am sensitive to noise and am really bothered by the insipid, droning local radio station.

I have fantasised about stealing in to his shed - where he keeps his radio - in the middle of the night and destroying the thing with a hammer. It has gotten so that I am considering moving. I will at least try and find a pair of noise-cancelling earphones. I need to resort to these lengths as CFS means that I am much more vulnerable to disruptions and discomforts and inconveniences than most people. Radiohead has stolen a certain amount of control over my environment, control that I need just to survive.

Of course you can never control everything. But when you have a chronic illness so much is out of your control - your level of activity, work, finances, travel, food - that you must have an ability to control what remains within your scope.

And when that ability is compromised, even in a way that would be trivial to most people, it has a disproportionate effect on your life. Small things - and slight losses of control - can have a large negative impact.

It is frustrating to live like this, so dependent on the understanding and consideration of others, almost powerless to do anything about it if people are not reasonable and considerate. There is no easy solution, you just soldier on, and try and wrest back all the minimal control over your life that you can while not being too much of a pain in the ass yourself. As I have said before, a delicate balance.