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.

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.

AN UNCERTAIN FUTURE/ THE DANGER OF HOPE

Mostly, I manage not to think about the future. The present is enough to be dealing with so, although I do look forward with a kind of dread, most of the time I am so caught up with dealing with what is happening now that I succeed in pushing thoughts of the future to the margins.

That is, until I start a new medication or course of treatment. At these times I find it hard to stop myself imagining what it would be like to be better. I am aware that this is not a useful activity, but it is difficult to avoid.

I did it last year before I began the Perrin treatment. I tried not to, but the therapist told me that he thought I would make a complete recovery in twelve to eighteen months. I didn't take this claim at face value, but did begin to expect something, some improvement, some more energy.

Naturally, when it didn't happen, I was disillusioned, brought low. I felt stupid for letting myself hope, for believing - even for a short time - the therapist's confidence in a recovery.

And now it is happening again. I am in the process of having tests and then hopefully getting treatment from the Breakspear clinic in the UK. I am particularly interested in trying anti-viral treatments, which some people have had success with in the past, and which I know Breakspear do offer.

Having to rest so regularly, I have too much free time to think, and so my mind wanders. And naturally it wanders from time to time to thoughts of a fuller life, what I would do if I could, the dangerous territory of imagining being better, or close to.

I begin to think about full time work, about saving for a house of my own, about travelling, getting a girlfriend. I start imagining a scenario where I am a more or less fully functioning member of society, with realistic ambitions and not such a compromised existence. I do try to squash these thoughts, but I can't keep them out forever.

And I think what I most dream about is less about a fuller life - which actually seems almost impossible to believe in after fifteen years with this - and more about losing this aforementioned dread of the future.

Because without some kind of significant improvement I really don't like the picture of my future that I see. In my early forties now, I am experiencing the first symptoms of aging, without really having experienced my youth. My late twenties and thirties were devoured by CFS/ME, and although I have regained a limited amount of functioning, and do have at least half a life now, I can never get those years back. I could probably handle my mid-life crisis better if I had actually had a full first half of my life.

And so the idea of getting into my late forties and fifties and still having to deal with this, is terrifying. Still struggling with finances, with no pension, pushing myself so I can work enough to pay rent, all the while getting older and with the normal reduction in health and energy that aging brings. And I don't have any energy to lose. At forty-one I am just about coping, I can't imagine how I could when the years start taking their toll.

The thought is so terrifying that normally I don't actually address it head on, though it still hovers there at the back of my mind. So an improvement would mean a fuller life, it would open up possibilities that are closed to me now. But it would also give me back some kind of positivity about what is to come, and might give me some hope that I still have a life left to live that is worth something, rather than what I am doing now, which is mainly just surviving.

Yet hope can be dangerous too. I have been through this quite a few times now. Starting a new course of treatment, I begin to believe in the possibility of recovery. And when it doesn't happen, as it invariably doesn't, picking myself up again after hope has been smashed, is tough.

Without hope it is impossible to go on. Yet with a chronic illness for which there are no real reliable treatments, you have to manage this hope. Maintain scepticism, never let yourself get carried away imagining a better future, while also trying to avoid getting too overwhelmed by thoughts of never getting better.

It is a delicate balancing act, balancing hope and dread, and not one that is always easy.

WHAT'S IN A NAME - ME OR CFS?

This condition that I deal with every day, the one I have lived with for more than fifteen years, is one that doesn't even have an agreed upon title for itself.

Its official title is Chronic Fatigue Syndrome (CFS). It has been named as such by various medical authorities in the US and in Europe.

Many sufferers prefer the term ME. ME stands for Myalgic Encephalomyelitis. Myalgic refers to myalgia, which is basically muscle pain. Encephalomyelitis is another way of saying "inflammation of the brain and spinal cord".

I suspect that the reason many people choose to use this term is that Myalgic Encephalomyelitis sounds much more medical and serious than Chronic Fatigue Syndrome. It suggests a real condition, and this is what sufferers want above all, for it to be acknowledged as a real, serious, physical illness.

It is also true that CFS is favoured by the group who insist on seeing the illness as a psychiatric condition, and this does not endear this title to people who are fighting against this view of the illness.

People get very annoyed when discussing this matter. There is a way of thinking that sees the title Chronic Fatigue Syndrome as somehow disrespectful, that it implies that all we are is tired. ME, it is said, is closer to describing the severity and complexity of the illness.

Others maintain that CFS does exist, but that it is different to ME, maybe less severe, more easily treatable. I've read a number of discussions on Facebook pages, and on forums about this, and it does get pretty heated. People feel strongly about this topic.

My opinion is that ME is a terrible name for this condition in general. Moreover, it is utterly undescriptive of my particular situation. I don't have any muscle pain, and there are many other people who don't either. And there is no evidence to suggest that my brain and spinal cord - or anyone's brain and spinal cord - is inflamed.

The term ME gives almost no information about what this condition is like, describes only one symptom that is not even universal, and is misleading when it describes a physical effect that doesn't even exist.

So ME may sound more impressive, yet this doesn't make it more accurate. And it is important to be accurate. Chronic fatigue syndrome is at least true. People with this condition do have chronic fatigue. The term CFS may be inadequate, it may leave out a whole world of other symptoms, but at least it is not misleading. Myalgic Encephalomyelitis certainly is.

My preference would be for CFIDS - Chronic Fatigue and Immune Deficiency (or Dysfunction) Syndrome. It is used a little in the US, though used to be used more.

CFIDS has the advantage of mentioning the immune system, which is a key component in causing symptoms, as well as the main symptom, fatigue. It certainly comes closer to describing my particular situation than any of the previous titles.

I suppose, though, that it is too much of a mouthful - even in the abbreviated version - to be a practical way of describing the condition. We need a title to be concise and easily explainable.

The truth is that there is no perfect way of naming this illness. There is no way of summing up the complexity and seriousness of what it's like to live with it, while also being accurate as to causes and dysfunction and symptoms. The best we can hope for is an approximation. CFS is unsatisfactory, but in my opinion it is better than ME, which describes nothing.

Until we understand the causes and mechanisms of the disease a little better we seem to be stuck with this unwieldy mish-mash of CFS/ME. The problem is that we lack any better way of describing the condition because we lack a basic understanding of what is behind it. Once that comes, let's hope we can get to a better way of naming what we have.

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.