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myhill protocol - experiences?

Discussion in 'General Treatment' started by moonchild, Aug 5, 2010.

  1. moonchild

    moonchild

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    hi everyone

    hope i'm putting this in the right place...tried searching a few ways and couldn't find anything about the myhill protocol - apologies if i'm missing something that is here. just saw a GP today who worked with dr. myhill in the UK and treats along the lines of the myhill protocol, testing etc. not something i know or have heard a huge amount over here so would be very interested to hear of experiences (positive or negative) from people who have followed this treatment plan.

    (the dr. did mention that she hadn't seen many people as sick as i have been for as long so things could be more complicated - so especially interested to hear from anyone in a similar position who has chosen to go down this path).

    healthy vibes to all...
     
  2. Rafael

    Rafael XMRV+ Member

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    I did mitochondria test with her - before they got flooded by requests post-publication and had to shut down international requests.
    I got some very interesting results (lots of detail as to what going wrong) and exchanged a little Q&A with her.
    And then, after checking with my usual specialist, who said Myhill was a "smart lady", I followed her protocol fairly closely (a few exceptions: e.g. sublingual meta-cobalamin instead of B12 injections, topical Mg instead of injection, keep on protein whey because it was definitely helping)
    I had some individualized additions based on the test results.
    I had the local pharmacist compound the Mineral Mix formula, I went religiously to her Stone Age diet.
    I am doing much better (but I was improving when I started her protocol so the correlation is not certain).
    I'm staying with it (the diet I am allowing more exceptions because I can afford to right now) .... so I must be convinced that it has been a factor in recovery.
    I am curious if you sent your blood from Australia or if you went to Wales in person.
    My test results were abysmal - more abysmal than I felt at the time - and I wondered if some blood deterioration due to travel wasn't a factor.
    Side note: Her publication on Mito function to Functionality correlation was based on a "Patients Report" a few years before (whose final graph, I believe better predicts the functionality of PWME than Myhill's actual final publication).
    That story - which others on board are better suited to describe than I - is inspiration to what organized patient groups can accomplish.
     
  3. ukme

    ukme Senior Member

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    Also did the mito test and followed the supplement protocol plus diet - bottled water only, gluten and dairy free as much as possible (tricky for a 14 yr old to follow though!). As with Rafael the overall result was terrible - 30%- and didn't seem to reflect the reality (I would have said 60%).
    Anyway with out a shadow of a doubt the Myhill protocol has helped my daughter to improve, it takes a long time, you have to introduce the supps one at a time and v slowly and like rafael we didn;t follow it to the letter some things she couldn't tolerate etc.
    Have moved on since then but still mainly adhere to the protocol.
    Best wishes whatever you do.
     
  4. aquariusgirl

    aquariusgirl Senior Member

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    tests

    Rafael.. I think you are talking about tests from the Acumen Lab in Devon, UK.

    Just wanted to say ANY doc or chiro or medical professional can order these tests. NOt just Dr Myhill.

    I ran tests thru them and the results were sent to my chiropractor in the States.

    Myhill was offering analysis of the tests in addition to ordering the labs. I think she got swamped...& that's why she stopped.

    But the lab is still working..& is independent of Myhill. I know they are analysing samples from Australia.

    HTH
     
  5. aquariusgirl

    aquariusgirl Senior Member

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    moonchild

    you may want to check out the threads on this forum that deal with methylation.. and posts by Rich Van Konynenburg....

    Lot of overlap with Myhill's work.
     
  6. Rafael

    Rafael XMRV+ Member

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    Thanks very much. I know someone, not in UK, who wants to do the test ..will appreciate this.
    I showed my poor UK knowledge. I thought lab was next door to Myhill.
    Amazing how thing work when medicine actually uses e-mail.
    I'll check Methylation thread to see if any researchers have proven/disproven her publication. The mito functionality could be a handy biomarker for research.
     
  7. aquariusgirl

    aquariusgirl Senior Member

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    I think a lot of people are confused about this & think they can't order these tests if they don't go thru Myhill.. but they are actually very easy to order.

    Myhill and John MacLaren Howard actually co-authored a very interesting paper on mito function or dysfunction in PWCs.. that is worth reading.
     
  8. moonchild

    moonchild

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    thanks for all the replies and the names of threads to check out. the dr i saw here would send the sample straight to acumen, not through myhill. she gave me a copy of their paper that has been mentioned and also a summery of her treatment plan. at the moment i'm still recovering from yesterday's appointment and am really overwhelmed...have done elimination diets before and always feel that people want you to do it all again their way when you start someone new. at least something i can do though (on a vegetarian diet could make it more interesting i suspect). am already making the shift to organic produce and already on lots of supplements so those seem manageable. the stipulations about removing all sorts of things from the house seemed much more complicated/energy involving/more of a commitment. need to somehow work out whether it is the thing for me for now or not...other people had been mentioning things like low dose naltrexone recently too. right now i honestly feel like if i can't get the pain under control and get a little sleep i'm going to die (how you can be SO sick and not be dying i haven't figured out yet). so, decisions to make, and ii never know how you decide which path to take...
     
  9. moonchild

    moonchild

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    oh, one more thing...any thoughts on myhill vs teitelbaum (if that's how you spell it?)? a lot of their suggestions seem to be similar...
     
  10. taniaaust1

    taniaaust1

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    moonchild .. have you looked at her site? http://www.drmyhill.co.uk/

    I emailed her earlier in the week to give her support to her case and i was wondering how things were going for her, she's very nice person.

    (for anyone interested Dr Sarah Myhill replied back, she seems in good spirits even thou she's going throu a quite stressful situation with that hearing. Shes got two apologies from the GMC this week on things. Once again the GMC has withheld letters from her so she's put in a complaint (the letters had a lot of misrepresentation in them).
     
  11. moonchild

    moonchild

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    yep, i have looked at her site thanks (slowing wading through it but finding it all quite overwhelming and a bit hard to navigate).

    i thought that her case had been through the hearing...is it really still continuing??
     
  12. kadir

    kadir

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    Dr Sarah Myhill treatment

    I have been a patient of Dr Myhill after trying out Dr Teitelbaum. I must say that her approach is very beneficial to my cfs. I have done Miochondria blood test and saliva test and from which I am now on supplements as well as Myhill magic minerals for the last one year which have helped me a lot to improve my energy level and mood. I am still with Dr Myhill and hope to improve more in next couple of years
    Kadir
     
  13. curry

    curry Senior Member

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    I'm also doing her treatment approach and can feel some improvements.
    It is not only that I feel better, but there are some signs of recovery of my body which are clearly visible.
    (I don't want to go into further details as it is some women stuff.)

    Anyway, if you don't know yet about her approach, you can read about it here:

    I will try to give some links to start with, as the website can be a bit overwhelming with the amount of information.


    Summary of Dr Myhills approach for CFS sufferers
    CFS Checklist
    Check list what to test for, to exclude other than CFS
    Intro
    Diet
    Supplements
    Lifestyle Management 1
    Lifestyle Management 2
    CFS - The Central Cause Mitochondrial Failure
    The methylation cycle
    Fibromyalgia
    Hormonal Problems in CFS
    Heart disease and Circulation
    Toxic Causes of CFS
    Brain Fog
     
  14. Mark

    Mark Acting CEO

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    I am always careful to say that I improved from 30% to 80% during the year or so when I was following Dr Myhill's advice (via her website and through a doctor associated with her). After a decade of no progress whatsoever, during that year I improved enormously - but I can't conclude for certain which treatments, which supplements, which lifestyle changes were responsible. Maybe only 2 or 3 of the many things I was doing were significant. But near enough everything I did during that year came from Dr Myhill's recommendations, one way or the other, and near enough everything seemed to make a positive difference that I could feel and measure directly.

    The Biolab tests all made perfect sense too, they correlated well with my own observations, and the scientific detail all checked out when I looked it up on Wikipedia.

    It was a slow and gradual process, it cost quite a bit of money and an investment of time and effort as well (although nothing was overpriced, quite the reverse) but it was a major turnaround.

    There is a huge overlap between this 'protocol' and the recommendations of many other CFS physicians, as others have observed here. I wouldn't describe my treatment as a 'protocol' actually, as the whole regime was quite tailored to my own tested vitamin deficiencies and sensitivities, but many of the themes are clearly the same for all patients. I still need to continue with many of the recommendations, and when I experiment with relaxing the regime - hoping to save myself some of the ongoing maintenance effort - I noticeably deteriorate quite fast.

    So in summary I would recommend Dr Myhill and her website, without hesitation, to any UK ME/CFS patient. Like any other protocol or physician, I don't think her recommendations are perfect - I suspect some of the measures I took may have been unnecessary or of marginal significance - but I think Dr Myhill is the best option we have in the UK.

    The one thing my treatment did not emphasise as much as it could have done was the significance of identifying dietary sensitivities. I made further progress a year or two later with the help of Allergy UK's dietary sensitivity testing, identifying the limited diet which I follow now, which brought a further significant improvement. I also got some benefit from Shiatsu, which enabled me to "exercise without exercising" (the practitioner does the work for you) and that got my body moving again. (I still avoid any unnecessary physical activity and try to avoid stress). And I am still left with all the sensitivities and restrictions that we identified during testing - but after sustained abstinence, my tolerance thresholds are much higher; I don't get aches and pains from picking up glossy magazines any more.

    So there are a lot of things I have done which have all helped a little, and I have found them all to be necessary to get the improvements I have got, and none of them have "cured" me but they have all made a big, positive, sustained difference. I will be returning to the physician associated with Dr Myhill for further advice at some point in the next year to see if I can make further progress.

    I repeat that I believe Dr Myhill is the best option we have for ME/CFS/MCS in the UK, and I await with great interest to see whether the GMC will discipline her tomorrow for having the temerity to actually treat patients who the NHS refuses to care for. Whatever they may do to her, she will remain a true Doctor in my eyes, which is more than I can say for some of the overpaid and profoundly ignorant drug-dealers I have encountered within the NHS. I only wish more ME/CFS patients had the financial resources and the confidence to escape from the clutches of the NHS, which on the whole (and there are some rare exceptions, some good GPs who do try hard to inform themselves) does them nothing but harm.
     
  15. curry

    curry Senior Member

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    Yep. She also seems to be a pretty good doctor not only for CFS patients - there was an article on the beep about an elderly lady who had, further to her other GPs, terminal heart failure and was told there wouldn't be any more treatment for her. The lady's husband described his wife's situation to be very close to death at this time.

    She consulted then Dr Myhill, which put her on some supplements and the lady completely perked up again. http://news.bbc.co.uk/1/hi/wales/mid/8650048.stm If you scroll down there is a video about this patient. I think this case is quite impressive, and gives me further confidence in her abilities.
     
  16. OverTheHills

    OverTheHills

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    I don't wish to be negative, but I'm going to provide the counter-example here: I tried Myhill's protocol for a long time (18months) and it made very little difference to me.

    To be specific,
    the B12 injections (suggested by the expensive and rather dislikable Professor Findley then helpfully withdrawn by the NHS) continue to be helpful and Dr M taught me how to self-administer and prescribed it for me.
    The stone-age diet made me worse, although betaine hydrohloride seemed helpful when my gut seemed to stop dead.
    She tried hard with the sleep problem but I have not found much help here from anything (most drugs either had no impact or made me feel ill, although Zopiclone worked wonderfully for a while until I became oversensitive to it).
    For allergies the doctor she referred me on to for neutralising injections was expensive and it didn't work.
    The minerals and supplements (Acetyl-L-Carnitine, d-ribose, magnesium injections(ow!), etc etc) never seemed to to make any difference.
    I couldn't afford far infra-red sauna but I used to go to an ordinary public sauna in the local swimming pool and I found it nice to feel warm for a change but of course a tiring workout for the heart. I don't think it did any fundamental good but it may have sweated out a few heavy metals.
    I paid for the mitochondrial tests and de Merleirs H2S urine tests but they aren't very useful if the treatments don't work.

    I do believe she is trying to help patients - she is probably the only doctor I have met so far who is really, actively trying to help. She does have some idiosyncratic and firm beliefs - the power of self-hypnosis to overcome sleep problems, an absolute belief in the stone-age diet as the answer to most things etc. She is not trying to rip anyone off and minimises the cost of supplements etc but it still costs a fortune because she recommends so much.

    In the end I think she was rather irritated by my failure to get better. She puts this down to mould allergy, despite my house being apparently mould-free. This may or may not be the reason for my non-recovery but she became impatient when I could not implement her solution of moving to Spain or right on the UK coast. This would have meant leaving my partner, in the case of Spain I don't speak the language, in the case of the UK coastal property is highly expensive, difficulties of long-distance move away from support network etc etc. I don't think mould allergy explains my strong seasonal pattern of being much improved in spring and then housebound all summer every year.

    I believe she is sincere, and probably some people are helped by her. She undoubtedly believes that ME exists and is physical (she thinks mitochondrial problems are fundamental which I think is plausible, but seems agnostic about XMRV).

    I despise the GMC's blatant persecution of her and wish they would all think for a change. Either that or catch a mysterious virus.

    :sofa: OTH

    PS in fact more of a :In bed: today as my partner has been in hospital for a week and I have been unavoidably overdoing things.
     
  17. knackers323

    knackers323 Senior Member

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    hi Moonchild, are you in nsw by any chance or does your doc do phone consults?
     
  18. Mark

    Mark Acting CEO

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    OTH, your perspective sounds easily believable to me as well actually, particularly the strong insistence on taking very radical measures which are extremely hard to do. I should emphasise again that I saw a different doctor associated with the environmental medicine approach, who was in contact with Dr Myhill but her approach differed in some ways. I never got the stone age diet recommended. I should also note that another friend was prescribed basically just B12 and magnesium injections (or at least I think that's all that he actually took up from the recommendations) and didn't find them very helpful.

    It's interesting that the B12 seems to have been one of the only things you found helpful; I always felt that was just about the most effective of the treatments recommended. Against the advice to take all the treatments together, I actually phased them in (and out again) one by one, so that I could judge what worked. I formed the opinion that the sublingual B12 was the most effective and that one or two of the other supplements helped.

    The other thing that I felt was extremely effective for me was the FIR sauna, and my portable FIR sauna cost well under 100 actually, and was a great investment. Supplementation of minerals was important during that detox I think, but FIR sauna was a significant treatment for me, whereas public saunas definitely were counter-productive, so it rather jumps out that you didn't do that part.

    I do have rather the impression of a "scattergun" approach, trying loads and loads of therapies and pills and insisting they are all essential, and maybe one or two will do the trick.

    Working on mold avoidance was, I think, an even bigger factor for me than any of the above, possibly excepting B12. Air filter made a huge difference. But my seasonal pattern was unlike yours, I still worsen in spring and autumn, so it sounds reasonable that mold might not be key for you.

    End of the day, bottom line in the UK is that none of the above treatments will be suggested by one's GP even though for all of them there are many people who find they help a lot: that's the real scandal, that GPs don't even know any of these ideas. For me, it was all about trying lots of different things and giving them a fair go, and seeing what worked and what didn't. I never had absolute faith in any of my doctors, I gave them a fair try and allowed myself to "be my own doctor" as well. ETA: that's still my approach in fact, just that I'm not actually seeing any doctor at the moment because I've reached a reasonable plateau of allergen-avoidance, and just wanting to get on with life while I can...who knows how long it will last...
     
  19. wallace

    wallace

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    I have just started a thread on Niacin and D ribose here which was heavily influnced by Dr M.

    http://www.forums.aboutmecfs.org/showthread.php?8394-niacin-and-D-ribose

    One difference between her and Dr T is her use of Niacin. Dr T doesnt suggest it by itself. In her online book on her website she says patients need 500 to 5000mg. I think she is right to push Niacin though I think straight niacin is best not sustained release. I would just go further with Niacin than she does. Elsewhere she says that there is a hardcore of patients where she gets disappointing results and suggest they try antiv viral medication. My suggestion is that she be a bit more aggressive with the Niacin going up to 6000mg for all who can manage it. that in time will work on eliminating our chronic infections such a lyme etc etc.

    CFS patients are vitamin dependent on B3. Her theory that we need to eat lots of b3 type food liver etc is incorrect. We need the vitamin not her stone age diet which she pushes religiously.

    one account of the energy process below

    http://www.droberholzer.com/nad_therapy.html

    wallace



    wallace
     
  20. justy

    justy Senior Member

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    Hi Wallace, i am following her supplement protocol and parts of the diet, but as i have been a vegetarian for a VERY long time, i am not about to go the whole hog with the meat eating part. She does seem to be particularly hung up on this. I have been having good results with the suplements and diet that i am doing so far - although gradually introducing the supplements is a real pain and is taking me ages.
     

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