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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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has anyone stuck religiously to Dr Myhill's protocol and hadsignificant improvements?

Discussion in 'General Treatment' started by anniekim, Dec 8, 2011.

  1. anniekim

    anniekim Senior Member

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    This is mainly for Brits as it's about Dr Myhill who is a doctor here in the UK.

    Over the years i find myself referring back to Dr M (female doc in Wales, sure many know who I'm referring to) website. I know some people really credit her but I find myself always a little bit perplexed by her M.E treatments and her take on M.E. She often repeats M.E is not a diagnosis but a symptom and then refers to all the different things that can cause fatigue... As to me, my m.e is so much more than fatigue I get a tad confused with her take.

    Also I know she is very big on diet, cutting out wheat, dairy, and sugar. I always end up feeling so guilty as although I only eat wheat infrequently now, have switched my dairy to goats products as seem to get less diarrhoea on it, i don't seem to have the willpower to cut out wheat, all dairy, even goats, and my biggest problem, sugar. I really crave some sugar daily. I try to not go mad on the sugar but the thought of cutting it out entirely makes me feel very depressed. I know Dr M would say i am addicted to it and probably have an overgrowth of candida in my gut.

    I was wondering if anyone on here has followed Dr M's treatment for a good period of time as i know she adds in things as each section is treated. And if you have stuck to it all, have you noticed significant improvements?

    Also Dr M on her website claims many people have made full recoveries with her treament plans and she is so successful in treating people that she has a six month waiting list. I wonder whether she has a six month waiting list because people are desperate and not because so many people have made full recoveries... I don't want to sound negative about her. I wonder whether her stance makes me feel guility as I don't believe deeply enough in her protocol to make the necessary huge changes and then think my lack of belief and willingness to stick to her protocol could be preventing me from improving...

    Many thanks in advance
     
  2. Waverunner

    Waverunner Senior Member

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    The problem with ME doctors is that they are very rare. Since there are so many ME patients and so few doctors, the principles of demand and supply lead to long waiting lists. I wouldn't say that a long waiting list equals high quality therefore. Regarding Dr M's treatment plan I can only say that a lot of people here tried lots of stuff and I don't know anyone who found a real solution to ME that works for everyone. The antivirals seem to show the highest rate of improvement and even cured some people but there are still lots of mysteries about ME and lots of cases that are still in the dark.
     
  3. xchocoholic

    xchocoholic Senior Member

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    I've made so many health improvements following a paleo / low carb / low oxalate diet that I trust it now.
    Dr. Wahls' recovery was very re-assuring too.

    When researching cfs years ago I found dr myhill's info and was releived that she recommended the
    Paleo diet. I'd already concluded that would be my next experiment. I was also struck by the fact that she said most of her patients had chronic hypoglycemia
    I have that too.

    Gluten and dairy act as opioids in some people which leads to an addiction. It science not a personal
    weakness .. Same goes for sugar or caffeine or alcohol addiction .. We just happen to live in a society that
    encourages us to consume those.

    I'm not up on dr myhill's total protocal mostly because I see an integrative doctor who has me on her
    protocal. I believe this is the same or close to dr myhill's tho .. Do you have a link for that ?

    My doc ran tests for food intolerances, nutritional deficiencies, dysbiosis, hormones, pregnenolone, thyroid antibodies, dhea, etc .. She's been right too. I needed to treat these. I never know what she's thinking tho so I'm not sure
    what's next.

    IMHO, GLUTEN is my kryptonite. Exposure causes a varirty of my symptoms to return . And altho I try, I can't seem to avoid getting minute
    amounts .. I think bob's red mill hazel meal or flax is nailing me now. Both are labelled gf .. but I'm just too tired and hungry to go survive on meats, fruits and veggies that I have to prepare 24/7.

    Btw. I had to wait 6 months to see mine too. And it's hard to get back in. She's very
    busy .. And very good ..

    Tc .. X
     
  4. taniaaust1

    taniaaust1

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    I think any ME specialist who is being there for their patients will have long waiting lists whether or not they are successfully having some cures or not.

    I can only say due to not having seen her myself, that some of what Dr Myhill does suggest her patients to do has certainly helped me some eg low carb diet, B12 injections.
     
  5. justy

    justy Senior Member

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    Hi Anniekim, i have been a patient of Dr Myhills for over a year now and have seen significant improvements. At first i had her mito test done and got the results alongside her recomendations, i worked with this for a long while, taking the supplements, pacing properly, getting my sleep right, diet etc. I found it took me a long time to get all the supplements in as i was sensitive to so many of them. Eventually i went to see her and then the improvements really began. I have since had two phone consultations and i send her e mail updates and questions if i have them.
    She is great and really listens to what you have to say, she tries all angles and is open to suggestions. I thought she would tell me off for not being strict enough with my diet, but she is very good about it all and not at all the fascist i had imagined. I havent stuck religiously to the protocol, but coming off sugar and doing the anti candida diet was a good thing for me - though hard!
    She is very knowledgeable and keeps up to date with research etc. She doesnt do viral testing because she is an integrative type of doctor, but she will prescribe drugs if she thinks it is necessary.

    Doing the B12 injections and moving to spray on minerals and iron have helped me the most in recent times. But the progress is slow and you do need to be patient.

    I am in touch with quite a lot of other people who are patients of hers or who have followed her protocol through another forum and many have had veryu significant help from Dr M. One woman i knwo has completely recovered as far as i can tell - she no longer posts but seems busy busy on facebook!
    I would definately recommend her approach, but i think it is much easier if you can actually see her or have phone consults - it is much less confusing. Her office staff are also immensly helpful and always willing to field questions and send off answers.
    All the best, Justy.
     
  6. anniekim

    anniekim Senior Member

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    Thanks for your reply. Sorry I wasn't clear are you saying that you didn't notice much improvement after taking all the mito supps it's only the things you have done since then, B12 etc? Many thanks...
     
  7. Lala

    Lala Senior Member

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    Hello justy,

    what do you use to spray on minerals?
     
  8. richvank

    richvank Senior Member

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    Hi, anniekim.

    I'm not an M.E. patient, but I definitely believe that Dr. Myhill is very much on the right track in her treatment of M.E. I understand that she does include methylation treatment for some of her patients. My only suggestion would be to increase the emphasis on this, because I believe that the methylation partial block and glutathione depletion are at the root of the mito dysfunction that she has studied and demonstrated so well, together with Dr. Howard and Dr. Booth. I have emphasized this to Drs. Myhill, Howard and Booth several times, but as far as I know, they are not (yet! :)-)) completely convinced of this. This may be due in part to the type of glutathione test that Dr. Howard runs, which is a red blood cell total glutathione test. This is not as sensitive to tissue cell reduced glutathione levels as is the plasma reduced glutathione test offered by the European Laboratory of Nutrients in the Netherlands and the Health Diagnositics and Research Institute in New Jersey, USA, so it doesn't always show a level lower than the normal range, though the person may in fact actually have glutathione depletion.

    Best regards,

    Rich
     
  9. xchocoholic

    xchocoholic Senior Member

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    Hi justy,

    Do you have a link to dr myhill's total protocal ? And what supplements do you take ?
    Did your mito tests determine these ? Did you test positive for leaky gut or just candida ? Thanks .. X
     
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I used to have diarrhea a lot also. I had a major flare of symptoms a couple of years ago and went "nuts" seeing Drs and making changes. I was tired of just changing 1 thing to see the impact and to not make any substantial gains. I am not sure if Low Dose Naltrexone is the reason for my better digestion, but I think it might be, and I think it is available in the UK (perhaps not easily).

    GG

    PS I think it took about 1.5 years before I noticed anything, on LDN for 2 years and counting!
     
  11. anne_likes_red

    anne_likes_red Senior Member

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    As far as I know LDN is still available from a compounding pharmacy in Scotland. I don't know which pharmacy sorry but it should be available in the UK :)

    xchoc, Is Dr Myhill recommending a paleo diet now? (No grains?)
    I made big improvements transitioning to a grain free diet 4 years ago. My anemia resolved itself after 20 years of never responding to supplementation, and inflammatory pain in my joints also disappeared. I recommend a trial, at least, of that type of diet.

    :)
     
  12. justy

    justy Senior Member

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    Hi Anniekim, i did notice some slight improvement with some of the supps recommended on some of my symptoms. For example she recommends magnesium and this cleared up my severe cramps and restless leg syndrome, over time i think it has also helped with anxiety and sleep. Vit D3 has helped a lot with cognitive problems, vit c and selenium together made a big difference for a while. The thing is it takes a long while to restore functioning with supps and you have to stick to the pacing and resting, otherwise the rest wont help so much. I then had a bigger improvement with the B12 etc, especially after actually seeing her.

    Lala - Dr Myhill has developed her own mineral spray with something in it -sorry cant remember the name, its a solvent from plants and it makes you absorb things - ive had much more improvement since using the mineral spray as we started to realise i might not be absorbing things properly through the gut. I also use a transdermal iron spray from her after having low ferritin (5) for years and supplementing orally for years - i havent been re tested yet, but i think its helping.

    Rich - i couldn't agree more re the Methylation Block Hypotheses. I have discussed this with Dr M and she feels that taking injected MB12 will get round this with L glutathione (orally 250mg a day) this regime has helped me, even taking the glutathione, which doesnt make sense as i shouldnt really be absorbing it. My Glutathione was very low from the Acumen lab report and i have blockages on my Mn SODase gene. Have you considered inviting Dr M to view your videos from Sweden - they really are very good. I want to try the full MCB protocol but dont want to do it without full Dr support, especially as i am so sensitive to things.

    XCHOC - i havent tested for gut function, im sure i have leaky gut though. i didnt need to test for candida i had it severely systemically and it could be seen in my throat, mouth oesophageus etc as well as skin rashes. Dr M recommends a very wide range of supps. A whole group that she says everyone should take and then extra ones based on test results (mito test). I never took all the ones recommended due to sensitivites and the time it takes to introduce them all!

    Dr M does very strongly emphasise basic nutrients, sleep, rest and pacing as being paramount before doing all the rest, then you add on according to results. She also likes to throw it all at you at once rather than try one thing at a time as she feels it works better - i have had to be a little more careful and havent stuck that well to the diet - due to being a vegetarian, but i have still had good improvements.

    http://www.drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers.

    http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

    http://www.drmyhill.co.uk/wiki/Mitochondrial_Function_Profile

    she also has a free E book on her protocol which is very detailed, you can get it here:
    http://drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill

    All the best, Justy.
     
  13. xchocoholic

    xchocoholic Senior Member

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    Hi anne,

    I googled myhill paleo and found her website which says she recommends this.
    Her website is easier for me to follow now, but I still need a video, like Dr. Wahls',
    to understand all this.

    I am following her protocal tho. Well my integrative doctor is anyways. I'm finished
    with the basics like diet, candida and nutritional deficiencies that can be tested for. My hormones, thyroid and adrenals have been tested. And basically, I'm a mess .. Or was .. Well, not so much now .. I'm into what Dr. Myhill calls the bolt-ons now.

    Holding me back is my celiac disease and the fact that gluten is freakin' everywhere. :mask: And the fact that my body has been without proper nutrition for 50 years.

    Imho, the paleo diet is the best diet for getting nutrients. Dr. Wahls addition of seaweed and heavy leafy greens to the Paleo is intriguing tho. I've been eating dulse for a few years but I'm looking at the other forms now. I bought kelp noodles the other day and loved them but then I read on myhill's site to avoid foods in plastic. I can't catch a break here .. :oops:

    Tc .. X
     
  14. Lala

    Lala Senior Member

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    Thank you, Justy.
     
  15. anniekim

    anniekim Senior Member

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    Thanks justy. I did have some telephone consults with Dr Myhill a few years back. She was very insistent that if I did not change my out of kilter body clock, I would never improve. She prescribed sleeping tablets to make me fall asleep earlier. It was a disaster. I kept telling her I was feeling worse and she kept saying this was to be expected as my body was adjusting to my new sleeping times and to persevere. Upshot was my m.e quickly became very severe and I was totally bedridden, barely able to talk for 16 months. With this experience, I am wary of dr m, but I totally take on board others feel she has helped them which is great. I think she has definitely identified some problems that are happening in m.e but I'm always a little wary of her insistence that if you follow her recommendations to the t you will recover. I think I have more faith in docs if they say we can help you improve but no ones knows yet what is the root cause.
     
  16. Abha

    Abha Abha

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    LDN can be obtained from this chemist(Glasgow)see link below.One needs a private prescription(costs about 5)and a months supply of LDN costs 15(a year or so ago).I used LDN for some time but stopped when I tried Dr Jadin's (Belgium/S.Africa)Rickettsia/CFS/ME Protocol.I prefer the liquid LDN.

    Dickson's Pharmacy For those of you pondering whether to try LDN ...
    One port of call for either the capsule or liquid form of LDN is the family-owned firm Dickson Chemist in Glasgow (telephone 0141 647 8032). One month's ...
    http://www.ldnresearchtrust.org/uploadeddocuments/ldn-from-dickson-s-pharmacy.pdf
     
  17. justy

    justy Senior Member

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    Hi Anniekim, i hadnt realised you had been consulting Dr M. For me i try something and if i doesnt work, no matter who tells me it should, then i abandon it. I am so sorry that you got so much more ill with her advice. I also got a lot worse before i got better following her protocol and i think this can be normal, but i agree that how you felt was not acceptable and one size cannot always fit all.
    I admit i am not good at sticking religiously to things she suggests. For example she wants me to cut out all dairy. but i dont see nay difference after a very long time without. I am also a vegetarian, which most M.E docs dont approve of, and i made it quite clear i wasnt going to change that.
    I hope you have managed to gain some improvement since then?
    Take care, Justy.
     
  18. sianrecovery

    sianrecovery Senior Member

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    Hi guys

    I have been working with dr myhill for nearly a year, and have improved alot on her protocol. I had already been working with another nutritionalist (and still am) and had already excluded diary and gluten. I like Sarah Myhill a lot, and i really believe she is sincere in her desire to help. However, I have stopped thinking a while back that any one person had all the answers. I also do Perrin technique, Donna Eden energy stuff and am doing Rich's protocol. I think he is spot in saying this is an area Sarah could maybe tweak her stuff. I have also just tested postive for KPU via a test with the nutrionalist and have started the Core stuff. Its like everyone has a little piece of the puzzle..but no one is making exactly the same picture. I travel hopefully.

    Anniekim - my craving for sugar has tormented me for years - I am convinced its a part of the overall picture - sometimes I walk the path of righteousness, and sometimes I dont - the last few weeks have been dont - carbs and sugar! I'm telling myself as I write this to get it back together!

    In summary, yes, dr myhill has definitely helped me raise my level of functioning, in tandem with other modalities and practitioners.
     
    WendyM likes this.
  19. justy

    justy Senior Member

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    Sian i agree totally with your views on this. Sugar is also my nemesis!
    Justy
     
  20. anniekim

    anniekim Senior Member

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    Justy, the phone consults with dr M were six years ago. I am better than when I was bedridden but have never got to the level I was before the severe decline. In fact after 16 months bedridden, barely able to talk ,spoon fed, but thankfully not tube fed, I made a dramatic improvement within 24 hours. Could suddenly get up, shower, dress. This happened after Christian prayer. As a Christian i believe i received some healing. Why only partial, why even any, I have no idea, but ever grateful. Thank you for sharing your experience of receiving treatment from Dr M. I hope you continue to make improvements

    Sian, thanks for your detailed reply and sharing I am not the only one who battles with the love of the white stuff! I had never thought of it as being part of the m.e. maybe because i've loved it since a child and I only got m.e in my twenties... Hope you make continued improvements too

    Chuckled at you talking about your struggle with sugar as walking the path of righteousness or not. I am a dirty sinner with regards sugar addiction lol

    Edit:

    Sian, I have one more question if that's ok. Do you have any theories on how sugar is implicated in m.e? Any thoughts on candida? Thanks
     

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