Tuesday, August 20, 2013

BREAKSPEAR 4: O2 AND CO2

I've been attending this clinic just outside London 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.


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 Hemel 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.  

17 comments:

  1. Please have a look at my comment just posted regarding your last visit.

    I wanted to add Dr Munro also said to me I had this brain stem instability and said this was due to allergies. I Googled this but could find no evidence to this effect and I just don't believe it.

    If the Ruiximab theory regarding autoimmunity causing our illness this surely would explain all the problems with the brain.

    Pam

    ReplyDelete
    Replies
    1. Hi Pam, thanks for your comment. I think we were in touch already through the Phoenix Rising website.

      I agree that the idea that the brain stem inflammation is caused by allergies seems a little unlikely. I found it hard to take seriously when she said it, though of course I have an information deficit and so can't know for sure. The LDI is still something I am considering, though.

      As for the Rituximab, who knows? Autoimmunity may play a part in some people's conditions, but it's clear that we need more research on this.

      Delete
    2. This comment has been removed by the author.

      Delete
    3. I had this test and abnormal brain stem activity shows on test as frequent ABSA.That does come up on google.I asked and can be food sensitivies or infection/virus and apparently they have evidence the ASBA changes after treatment.I am having LDI and treatment for infections so I will update u on my test results.I think u need an open mind or there is no point in trying it and also give it long enough!They say treating ME is like a plant,it needs lots of things to live and if u give it ONLY sun,then decide sun doesn't work on its own and take it away obviously it won't work.You need sun,water,minerals etc - a whole body view.So give things a good try along with everything else in place!

      Delete
    4. I agree that you have to keep an open mind, but it is also important to be discriminating, as all of these tests and treatments cost money. Breakspear do actually want to help you as a patient, but they are also a business, and happy to suggest as many tests and treatments and supplements as they can. So it is important to pick and choose your treatments, in my opinion. Also, if you are trying loads of things, and feel better, you don´t know which thing worked!

      Delete
  2. I have a very foggy head today so the 'technical' bits I'm struggling to digest but I think I get the jist of it. The mask doesn't sound ideal but I hope you find it helps some once you've been on it a bit longer, best of luck!

    ReplyDelete
    Replies
    1. Thanks for the comment Hayley, meant to reply before but crashed a few weeks back. Have to be honest and say that I only have a vague grasp of the technical bits myself. Will restart the mask soon and will see how it goes, had to stop it recently during relapse.

      Delete
  3. Hi
    Took my son to the Breakspear for the first time a few weeks ago and he did the Autonomic testing with Dr Julu amongst other tests. We are waiting for the results and expecting the CO2 mask. Really keen to know how you are going on. Hoping it is helping,
    El

    ReplyDelete
    Replies
    1. Thanks Elaine for your comment. I've just had a fairly serious relapse and so gave up the mask for a while, but hope to get back to it soon, and I'll post updates here as I go. I'd be interested to hear how your son gets on if he does indeed get the mask, please let us know here, it's useful to share this info.

      Delete
  4. Hi,I am attending Breakspear too for ME and possibly Lyme.I have had 3 visits and just got a o2 mask as mine was 24. Would be good to keep in touch!

    ReplyDelete
    Replies
    1. Absolutely very useful to keep in touch, comparing experiences is very valuable, not just for us but for others. This is part of the reason I started the blog. I've recently restarted using the CO2 rebreathing mask, and am getting good results actually. I'll blog about it when I have a little more experience with it.

      Delete
    2. Good news!me too but I hate it do u?I will never give up but I feel panicked when I put it on.Dr Shah said is the body resisting co2.Apparently takes 3 months for autonomic nervous system to change.Can u sleep in it?

      Delete
    3. I don't feel panicked, but I started with a small length of time, an hour a day, and built up from there. It is uncomfortable in bed, but I can more or less sleep with it.
      I started using it for a week, then stopped while I was recovering from a stomach bug, then crashed badly. It is only now that I have restarted that I am coming out of my crash, so it certainly has some effect. I'm curious to see if I can actually now make some progress with it.

      Delete
  5. Maybe I started too quick as my co2 is only 24.I did one hour first day,then 2,then 3,then 4 spread through day but I cannot sleep in it.I am considering emailing them as I feel really lightheaded when i wear it.I'm not sure if is normal!it is scary when they give lot of stuff to get on with & I live really far away.Glad u r recovered from stomach bug!

    ReplyDelete
    Replies
    1. If you're feeling light-headed it sounds like you should email them and ask them for advice. What I would say is that I found that if I increased the time I used the mask too quickly I would feel worse initially, sleepier, heavier. Maybe if you start again, start with half an hour a day and increase very very gradually, that might help.

      Delete
    2. yeah same story - brain stem inflammation through allergies and LDI pushed. I had it done years ago at Airdale which is closed and it made me worse. Dr M says that they do it a different way but I had a bad reaction when the first needle went in. I should have stopped there but gave it a try for 5 months and severely relapsed. I think that most of my problems is due to my biochemistry especially with methylation but they are not up on that at BS. I decided not to do anything atm but have the extra tests suggested. If I was paying I would go the methylation way first.

      Delete