Thursday, June 27, 2013

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.




4 comments:

  1. Why not post on phoenix rising, some people there have been to breakspeare.
    Dr Myhill treats the same but is much cheaper.
    Far infra red sauna would do the same detox much cheaper and more evidence of helping.
    http://www.get-fitt.com/ sell them.
    Angel x

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    1. Hi Amy Louise
      Thanks for your comment. I have actually posted on Phoenix Rising, and someone there made the same suggestion as you, to get the infra red sauna. It is something I will definitely consider. Have you used this? I'm interested to hear some experiences of it.
      However, the main cost of the treatment will be the vitamin and glutathione infusions, about £1500 for the week. The hyperthermia treatment is much less. I simply have no way of knowing if these infusions are effective, or if they are worth their cost. This is my real dilemma.

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  2. Hi, it's a big decision alright. I had the ATP and TL done a few years ago and it is good to have something dysfunctional on paper, especially when going for medical reviews etc I did supplement therapies but didn't really benefit. In the US they often talk about the Myers cocktail, it sounds nourishing and I like the idea, but I wonder if it would only give a temporary boost? Could you try the anti-virals first and see what happens? That way you will know exactly what is or isn't working. I remember reading the stories about Gortor in Cologne. One woman had a bad reaction to the hyperthermia, but everyone is different. In theory it sounds good. I have tried the FIR sauna once, I got a loan from someone, but it didn't agree with me, but you were be in a different category to me, i.e much better, so you might be fine with it. Good luck making your decision.

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    1. Hi Titch
      Thanks for your comment. It is a difficult decision, and starting with the anti-virals and leaving the hyperthermia until later is one approach that I am seriously considering. I too have taken a lot of the ATP supplements and only magnesium has helped. The idea of the doctor in Breakspear is that because my ATP sites are blocked by toxins, the supplements can have no effect. I have no idea if this is true or not.
      I also suspect that I may not react very well to having my body slowly heated for a prolonged period of time, though I suppose the only way to find out for real is to do it.

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