Monday, July 15, 2013


 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 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. 


  1. Thanks for the update. The personal FIR sounds like a good idea. I took the Immunovir some years ago, I tried to get some tests done here in Ireland from an immunologist before taking, but no joy. I managed to get it from my GP off label, so thought I'd suggest that to you, it would save you money, if your GP was willing. I think I stayed on it a few months, without noticing a difference, but it probably wasn't long enough, and hard when I wasn't being monitored. Good luck with your programme, hope something kicks in over the next couple of months.

    1. Hi Titch, thanks for your suggestion about the Immunovir, I am going to see my GP next week in the hope he might prescribe it to me. I just hope I can tolerate it, I have already started the Artesunate and am having trouble stomaching it, even at low doses.

  2. Hi Chronic,

    If it doesn't work out at Breakspear I can recommend two options:

    1. NAET - this process is about rebalancing the immune system. It is non-invasive and you'll know after 10 treatments whether it is worth continuing. Some websites:

    2. Michael Ash - probably the leading person in the UK for the study of Advanced Nutrition. He is very big on the gut and liver. His website:

    From what I have deduced his favourite supplements are:

    A. Culturelle probiotic (LGG).
    B. Acetyl-Glutathione made by Allergy Research.
    C. Tocomin made by Allergy Research.
    D. NT Factor made by Allergy Research.

    Good fortune

  3. Chronic,

    Just some follow on links to save you time if you decide to research Michael Ash:

    Glycophospholipids (NT Factor):

    LGG (Culturelle):

    Tocotrienols (Tocomin):


    Purchasing options:

    ~Culturelle - can be bought on Amazon.

    ~Acetyl-Glutathione, NT Factor and Tocomin - can be bought from Allergy Research's public sales channel website Nutricology and is shipped direct from the States, it's the cheapest way to buy the products.

    1. Thanks for your comment, SaneSaver. Do you have personal experience with any or all of these treatments? I'd be interested about whether there is documented - or anecdotal - evidence for their efficacy.

  4. Chronic,

    NAET saved my life.

    Michael Ash protocol: I started with A-GSH, then LGG and recently Tocomin, just got NT Factor left to introduce. I have had no negative response.

    With CFS/ME it's a matter of trial and terror :-(

    NAET would cost around £400.00 for ten sessions.

    Michael Ash protocol for one month would probably cost c.£160 depending on how you dose. For intance, A-GSH costs £100 for 60 pills, I take half a pill twice a day. You can buy the Allergy Research pills from Nutri-Link a UK supplement supplier, if you decide to buy in bulk it is cheaper to buy direct from the States at the Nutricology website.

    Good luck with the Breakspear protocol. Just thought I'd share some options, I'm still struggling for good health and NAET and the ASH protocol are what I have been working on since August 2012, my health has improved....

  5. Hi there,
    I read that the supplement inosine is just as effective as imunovir and of course much cheaper and easier to get. Just a thought. . .
    Also i dont knw how much you're paying per artesunate tablet but here is an online resource where you can get them without script.
    hope this help. all the best.
    Dan M

    1. Thanks Dan, I appreciate the advice and information. I have some doubt as to whether I am going to be able to take these medications, the artesunate at least is disrupting my stomach so far, even on a tiny dose. But I will certainly look up the link if I decide to continue.

  6. Chronic,

    I've been doing more reading on Glycophospholipids as I started taking them today via the NT Factor powder supplement. I came across some articles that I thought you might find interesting:

    I had never heard of Lipid Replacement Therapy until reading Michael Ash's website. It seems to make a lot of sense. The Allergy Research NT Factor powder costs about £65.00. According to the articles, in the link above, you know pretty quickly whether it lifts your fatigue.

    Good fortune

  7. I have also been to B/S twice and had the same Autonomic Testing done last year. I also had the problem of very low oxygen levels but in my case I also had high CO2. Dr Munro told me that this low oxygen state was very bad for me and recommended breathing oxygen up to 4 times a day. I hired one of their oxygen concentrators for a month and had a great response to the oxygen from the very first time I used it.

    I was so impressed I bought my own concentrator from Marcon Medical, worked out around £650. I have never regretted this and since breathing oxygen for around 40 minutes x 3 my immune system has been the best for years and I also recover much quicker from over exerting myself. I cannot speak highly enough about the oxygen concentrator.

    BTW Dr Munro also wanted me to do the allergy desensitisation but I was not interested in this so didn't go a head. I do not think my ME is anything to do with allergies because I hardly have any problems these days because I have to have a daily steroid and also thyroid meds.

    You might want to look into hiring an oxygen concentrator to give it a try. The first thing I noticed was that my vision was hugely improved, everything looked sharper including colours. This has never changed.

    I also took the antivirals but didn't seem to get any benefits, this was before the oxygen.

    Good Luck

  8. Hi Pam are you still attending?I also blog about my Breakspear experience would be nice to hear from others