I've been attending this clinic just outside
for a few months now. I have written
about it three times here, here and here. This is the latest update in my
testing and treatment programme. London
The first time that I attended the clinic, back in July, I had what they call an Autonomic Baseline test, that measures all the different aspects of the functioning of the autonomic nervous system, blood pressure, breathing, heart rate, blood gases etc. I got the results back a week or so later.
There were a number of findings. My supine (lying down) heart rate was normal, as was my level of oxygen (O2). My blood pressure was low but I knew that anyway.
The most significant results involved when the doctor doing the test - Dr Shah - gave me a challenge, i.e. he asked me to breathe deeply in and out six times. I felt quite light headed while I did this, and this was explained by the fact that my oxygen levels actually fell sharply during this period of deep breathing. What is supposed to happen in healthy individuals is that during exertion oxygen levels are supposed to rise. My response was the exact opposite of what would be ideal.
The carbon dioxide (CO2) result was also interesting. My baseline supine level of CO2 is below normal, at 37 mmHg (not sure what this stands for). Normal level is between 39 and 44. However, during exertion, the levels again fell sharply, and took a long long time to come back up again, in fact during the test they didn't even reach the already inadequate level of 37 but limped up to about 33.
I think the link between lack of oxygen and CFS had long been known about, but the CO2 connection is not as well established. I went back to Breakspear last week to have a breathing mask fitted and, as I thought, to get an oxygen concentrator to help with my blood gases.
Instead, I went through the autonomic test again, just to confirm my results, and Dr Shah gave me the breathing mask with no oxygen concentrator. This mask is simply a mask, like in the picture above, that covers most of my face, with a tube attached but which is not connected to anything the other end. He put it on me and then pointed to the dials on the computer measuring my CO2. My carbon dioxide levels had risen to 40, then 41, then 42 since I had been wearing the mask.
The idea is that when I breathe out I, like everyone, expel carbon dioxide, which gets trapped in the mask. In turn when breathing in I take in some of this expelled CO2, so increasing the levels in my blood. It is called a "rebreathing mask" for this reason. According to Dr Shah, the idea is that we work on normalising my CO2 levels, and then possibly move on to working with O2.
I am supposed to wear the mask for at least four hours a day. I have been using it for a few days now, though have found that to get to the four hours I have to wear it in bed. If I wear it during the day I am fairly incapacitated, it covers my eyes and I can't wear the glasses that I need to actually see anything, so all I can do is listen to the radio or sleep. Wearing it in bed is not ideal either, it is bulky and slightly uncomfortable to wear while lying down, but it is my only real option.
I will be re-evaluated in six to eight weeks. I haven't noticed any difference yet, but it is early days. Dr Shah mentioned that in wearing the mask and getting my body used to higher levels of CO2, my body supposedly learns that it needs more carbon dioxide and regulates itself to achieve the levels necessary.
I have no idea if this is a realistic goal or not, or if it is likely to work. I get the impression that they in Breakspear are in the early days of investigating treatments for this, and a lot of the treatments are trial and error. I have no choice but to trust that they know what they are talking about and to give it a go.
On a slightly different note, I spent one night in
Hempstead, where Breakspear is, and I stayed in Breakspear's own
guest house, which they run for their patients. It is quite reasonable
price-wise, in fact cheaper than the poky, run down guest house that I stayed
in the previous time I was in Hemel. The place has a kitchen of its own and a
large garden out the back.
While I was there there were five Italian ladies staying at the same time, all of whom were having treatment in Breakspear. They didn't have much English, but there was an interpreter there with them and also, as I speak Spanish, we were able to communicate to a certain extent.
The majority of the women seemed to be there for MCS, Multiple Chemical Sensitivity, which I know some people with ME suffer from too. They were having allergy testing, and were being given vaccines for their sensitivities, using low dose immunotherapy. Some of them, who were getting re-tested, reported having being helped a bit by the vaccines.
Low dose immunotherapy has been recommended for me too, not just for my food sensitivities, but also for my overall health. One thing that came up on the autonomic test was that I have a small level of brain stem activation, or inflammation, which Dr Munro seems to be sure is linked to allergies and sensitivities. I may look into this line of investigation at some stage, but the connection seems to me to be tenuous at best, and kind of hard to take seriously.
What may influence me to investigate the immunotherapy is that I have not been able to tolerate either anti-viral medication that Dr Munro prescribed for me, and so the vaccines may help me to lose my sensitivity to medication. Anyway, first things first. The O2/CO2 conundrum is enough to be going on with for now. I am just about ready to go to bed, with my Darth Vader mask on, and hopefully my CO2 levels coming back slowly to normal.