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.