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seeing Dr Myhill tomorrow

Discussion in 'ME/CFS Doctors' started by justy, May 30, 2011.

  1. justy

    justy Senior Member

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    Hi all, i am off to see Dr Myhill tomorrow for a first appointment, although i had testing doen through her last year and a long report. I'm a bit nervous as its my first long car journey in over 2 years (my husband is driving though)
    I have a list of questions as long as my arm and have no idea if i can pack it all in.

    These are my main queries:
    Symptom wise i need to discuss: all the problems i am having with my eyes and eyesight (seems to be getting worse)
    My gut and stomach, my recurring nose bleeds and ulcers, my knobbly sore joints on my hands and the weird skin on my hands (like an old lady!)

    Then i also want to discuss: testing for infections either viral or bacterial. (including lyme disease and bacterial overgrowth)
    Testing to look more closely at my transloctor protein function (i have significant blockages) a dicussion about detoxing.
    A discussion about Methylation protocols (im keen to try it but want a GP to keep an eye on me and my home GP wont do it)
    A discussion about my problems with taking the supplements she recommends (so many of them make me feel very wired and agitated)
    My husband is going to come in with me and wants to discuss the posibilty of it being infectious and what he can do to safegaurd his health and that of our children.

    Hmmm its a big ask in an hour, but i want to sort of throw it all out there and see what she thinks is the best way to go forwards and in what order.
    Will let you know how i get on.
    all the best, Justy.xx
  2. Sing

    Sing Senior Member

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    Thank you so much Justy, for sharing in detail your consultation with Dr. Myhill--who in my view is one of our most important medical people. Her focus on the mitochondria is central to what I believe is going on too. Anyway, please continue to keep us informed, as most of us can't go to see her, but might benefit from learning more from this good source.

    I hope she can be helpful to you and all your particular needs.

    Sing
  3. anniekim

    anniekim Senior Member

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    Good luck, hope you find the consult of help. I've had phone consults with her in the past. Now, I am absolutely aware that some people have been helped by Dr M, which is great, just my personal experience of her was not good. SHe insisted that I would never get better if I didn't change my sleeping pattern which was out of whack, I slept 3am-11am daily. To address this she suggested that I take sleeping tablets. I was very hesitant but desperate, this aggressive approach triggered a huge relapse. I kept telling her that I was feeling worse on changing my body clock so dramatically, but she insisted if i didn't I would have no chance of improving. I find her, personally, very dogmatic.

    A couple of years back (why I went back to her after becoming very ill a few years before after changing my body clock and was still much more ill years on, I don't know). She suggested i have my three amalgam fillings removed. I suggested wouldn't it be better to visit a specialist dentist and she said it would be ideal but if not I should still have them taken out as this was better than leaving them in. As the specialist dentists were all far away and I wasn't well enough to travel I attended by local dentist. Despite her advising that it didn't matter whether I had them all out in one go, I chose to at least have the them out with breaks in between. After having the second filling out, I had a big relapse, from which I still haven't recovered 17 months on.

    I feel some of Dr M's theories are on the money, but her approach is very gung ho and insistent, and she has far from all the answers, although her manner suggests she does. I also always struggle that she refers to chronic fatigue all the time. With each theory, she talks about 'it's well known that this x can cause fatigue, so that could be a cause of someone's individual chronic fatigue syndrome etc..'. I don't feel my illness is fatigue.
  4. richvank

    richvank Senior Member

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    Hi, Justy.

    It might be helpful if you made a briefly written list of the topics you want to discuss, so that you can give it to her at the beginning of the visit, and then she can have an overall look at where you are going before getting into all the details. I wish you the best for a successful visit.

    Rich
  5. Spring

    Spring Senior Member

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    Hello Justy,

    I hope your consult will go well. I hope Dr. Myhill can help you. I'm looking forward to reading her answeres to your questions.

    Best wishes,

    Spring
  6. maryb

    maryb iherb code TAK122

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    Annie it probably won't make you feel any better but I had 4 amalgams removed by a so called 'specialist dentist' 6 months ago and am still suffering the mercury problems from those, they didn't give me any pre or post chelation therapy other than 1 yes 1 chorella tablet, I still have 3 more to have out I, am now looking for a dentist who actually cares about the patient and not just the big bucks from 'specialist dentistry'. I really feel for you as its hard looking at chelation whilst you still have amalgams in.
    Sorry to hi-jack the thread - good luck Justy, hope the journey is okay, I stayed overnight nearby the 2nd time I went, Dr Myhill will help you if anyone can.
  7. Esther12

    Esther12 Senior Member

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    This was the sense I've got from speaking to people who like her. She seems too willing to make bold claims imo. I think that some of her patients like that sort of commanding presence and confidence, but it sounds a bit too similar to the exaggerated claims that are made about CBT/GET type stuff to me - I prefer doctors who are happy to say: "I don't know. Sorry." This is all based on second-hand experience, and some brief browsing of her website though, so it could be I picked up an unfair impression. Her more general CFS advice seemed sensible to me (pacing type stuff), but I'm not sure how keen I'd be to follow all her suggestions.
  8. maryb

    maryb iherb code TAK122

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    Esther - she makes bold claims based on her ecperience of seeing thousands of ME patients, I probably would too with all that knowledge. I'm sorry you feel able to compare the style of her work to the claims of the CBT?GET stuff in the same sentence, she would be appalled, she will tell you quite seriously excercise can kill you, read Cheyney's work about the effect of ME on the heart.
    Dr Myhill is not dogmatic, she asks if you would like to try....? and then will discuss the positives and negatives, you always have a choice, she doesn't run a dictatorship.
    She is truly one of the best GPs in England, we have so few.
  9. Esther12

    Esther12 Senior Member

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    Hi Mary - I only meant that Myhill seems willing to confidently make claims that aren't properly supported by the evidence. This seems pretty normal for CFS doctors, but it's something that I'm not keen on. I'm not a big fan of doctors basing their judgements of patients on their personal experience either... it leaves a lot of room for mistakes. I did say that I've not had personal experience of Myhill, and that my impression of her could be unfair.
  10. Sasha

    Sasha Fine, thank you

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    Good luck with your appointment, Justy, and thanks for posting about it. Once you've had a big rest (!) I'll be very interested to hear about how it went.

    I'm considering going down the Myhill route now. I'm wondering how it works in relation to your GP. I have a supportive GP who has been a huge help in getting me disability benefits and who believes that CFS is a biomedical disease but he is no expert in it. I'd like to keep my good relationship with him and I'm wondering whether I should notify him I'm contacting Dr Myhill beforehand for tests etc. Does anyone have a view on the best way to do this?

    I'm wondering what the advantages are of going to see Dr Myhill vs doing it all through the mail (answering the questionnaire, ordering the tests etc.). I'm housebound and a two-hour drive from her surgery - I'd need to get a relative to drive four hours to my place then I'd have to lie down in the back of the car for two hours to get there and then all in reverse! If there's no real advantage I'd rather stay put.

    How long does it take to get an appointment at the moment?

    There's an older thread on experiences with Dr Myhill here.

    Richvank's methylation protocol is supposed to be done under medical supervision because people can get bad reactions and there seem to be similarities with Dr Myhill's approach (I think - I may have misunderstood). I'm wondering how safe Dr Myhill's protocol is and how patients are monitored?

    Sorry to be asking so many questions, but I'd like to know this stuff!
  11. themjay

    themjay

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    I tried all of Dr Myhill's protocol four years ago. I was simply too ill to tolerate all the regime at once so had to implement it in phases. The problem is as you mentioned the distance factor - I was travelling to have EPD injections from her when she had a surgery in Nottingham and this was a 4 hour round trip. However in my opinion the most important thing she gives you is HOPE, which is in very short supply if you have been used to NHS or majority of GPs - the sense you are not alone, not crazy and can gain some control over your dreadful suffering was almost worth the consultation fee alone. I wish you all the best-but realise it will probably be a long haul you are signing up for.
  12. Sasha

    Sasha Fine, thank you

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    Hi themjay - thanks for telling me about your experience. I had EPD about 20 years ago during my first illness and it didn't do a thing for me - neither did all of the supplements or the exclusion diet. I was treated at the time by another doctor in the Biolab group using an "environmental medicine" approach. At the time, I persisted with it for a long time in the absence of any discernible benefit whatsoever for the same reason as you - I felt the need of something to give me hope - but now I'm hoping that there have been enough developments over the last 20 years that Dr Myhill's nutritional package will be addressing things that weren't being addressed before (such as mitochondrial issues etc.) and that there'll be some effectiveness for me that wasn't there before.

    I'd be happy to get even an hour a day extra of normal function (I only get an hour a day now on a good day!) so I'm thinking it's worth the risk in terms of expense. I thought I'd give it 6-12 months and see if there's a benefit.

    I'll be curious to hear what Dr Myhill told Justy about viral testing. I'm all for nutritional support etc. if it gets the job done but it doesn't for HIV, TB, leprosy, etc. and I wish we had someone in the UK like Dr Klimas who would offer antivirals and so on as well. Still, as I say, even a partial and small improvement makes a big difference when you're so disabled.

    Do you think that you have benefitted from Dr Myhill's protocol?
  13. justy

    justy Senior Member

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    Thank you so much everyone for your interest and opinions. I got back a few hours ago and im absolutely whacked out! so much to take in and all the travelling which was kind of fun but made me feel pretty weird. Dr Myhill was so lovely and kind and supportive and said a lot of stuff. I didnt have a chance to discuss all the things i wanted to and other stuff came up that i didnt expect. Im going to try and post more about it tomorrow.

    Sasha - a quick answer to your questions - i wrote to my GP and told him i was having testing through Dr Myhill nd also kindly requested they take my blood for it (they didnt charge me for this.) then next tiem i went in i asked hin and he sid fine. She isnt taking on any new ptients to see in person at the moment - i only got in because i had the test last year - but you can do all the tests and get reports on them plus her staff are very happy to answer questions about the test results and put questions to Dr Myhill for you at no extra charge, i did this for a whole year before deciding to see her for an extra boost.
    Am rambling now and not up to it. post more tomorrow xx
  14. Sasha

    Sasha Fine, thank you

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    Hi Justy - I'm glad you had such a good session with Dr Myhill. That's very useful to know how you dealt with your doctor about the bloods.

    Be sure to have a really good rest - I'm sure we can all wait! It will be really interesting to hear more once you're up to posting again.
  15. themjay

    themjay

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    Hi Sasha
    I've got to be honest and say that I have never felt any relief from any form of supplement whoever has prescribed it - but many other people have. MY mitichondrial function tests were 5% of normal and my cell free DNA was high as well. I tried her full package and injected B12 and Magnesium which was painful for several months. I tried D Ribose, Thyroxin, L Carnatine, EPD, probiotics etc but feel that at that time I was too ill for anything to be tolerated well. Interestingly my father was diagnosed with M.E in the late 80's and attributes his recovery solely to the regime advocated by a pair of naturopaths - Barbara and Kenneth Howe who used to work from Wilmslow, Cheshire.
  16. Sasha

    Sasha Fine, thank you

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    I'm sorry you didn't get any benefit - it must have been very dispiriting getting such a striking mito test and then to find the therapy didn't give any benefit.
  17. themjay

    themjay

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    In a way yes, but it is encouraging in a to finally get some positive test and therefore validation of illness. It shows that the Mitochondrial element is of importance. I had several encounters with so called specialists who were convinced that negative blood tests meant it was imaginary. I have just re-read Majid Ali's "Canary and Chronic Fatigue" and he stresses that with such a multi systemic illness looking for one diagnostic marker or cause is most likely going to be a futile pursuit.
  18. anniekim

    anniekim Senior Member

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    I have to say - and i can only report my experience and personal response to her - that I did not relate to her at all and I found her manner very insistent, as illustrated by her insistence that I would never get better if I didn't change my body clock and then prescribing a very aggressive way to do it. This is quite an emotive thing to say to a patient. For me personally, her aggressive approach to changing my body clock was too big an assault on my body and triggered an horrendous relapse. I personally did find her insistent and I've told her more than once that her approach to changing my body clock caused a relapse. She ignores this. We are all different and relate to people differently, but for me personally I wouldn't see her again.
  19. anniekim

    anniekim Senior Member

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    Thanks Maryb for the above, sorry you are suffering too after having amalgam fillings removed. I personally wonder whether it would have been better for me to just have left the fillins well alone. What are your thoughts on this? Thank you.
  20. justy

    justy Senior Member

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    I will try to say a bit about my appointment with Dr Myhill yesterday. Firstly to say that i had the mito tests done through her office a little over a year ago and ive been working on some parts of her protocol (tailored to me) since then, yesterday was my first consultation.

    There wasnt time to discuss all the issues -i wish i had though of Rich's excellent advice to type it up and give it to her at the beginning but that isnt how it went. We didnt talk about methylation or the gut problems, but we did talk about a whole lot of other things.
    She does have very specific ideas about recovery based on her work and research into mito dysfunction but i didnt find her dogmatic at all, infact i was a bit worried about being "told off" because i hadnt stuck to her advice but she was very gentle about it all. In terms of her bedside manner i found it the best i have ever encountered in a doctor, she was very warm and kind and sympathetic. we covered so much ground that my head was spinning by the time we left, but she said she will write a report for me and a copy will go to my GP (god knows what he will make of it all) We went over my test results and she took time to explain how awful my cell free DNA was and the importance of slowing down even further, we discussed my worries about this as last time i stopped pushing at all i seemed to get iller -she felt this was my body slowing down and starting to heal, she felt i was still spending far too much time running on adrenaline and not giving my body time to heal -it was great that my husband heard this from her as he now seems to really get it. We talked about my reactions to supplements and i explained i hadnt been able to take them all as i often ended up feeling very agitated by them, especially COQ10 which i am very deficient in. She told me which ones to prioritise and to forget about the others for now, i hadnt introduced carnitine yet and she felt that and the COQ10 where the most important ones for now. She said she had never heard of a reaction to COQ10 like the one i have but felt it was probably an allergy to one of the other ingredients and to play around with brand and a much lower dose -she was happy for me to take much lower doses of everything so long as i got some into me.
    We discussed my lung problems which was very useful as i have had no support and little help from my GP and consultant here. It was so amazing to say how i felt it was and to hear a medical professionl agree with me! she thought that my consultant had got it wrong (i do too and so do my family) and we talked about how to manage it better (basically what i am already doing) she also gave me some antibiotics to have at home alongside some fluconazole for candida in case i end up with a lung infection in the middle of the weekend and cant get to a doctor, she felt that my tests for lungs did infact point to a small patch of bronchiectasis which was continually getting inflamed and infected (this especially flares up if im exposed to perfumes or smoke etc) She said i had a very allergic profile (asthma and chest infections and tonsillitis as a child as well as MSC since childhood) and that for now to get a bit stricter about my dairy exposure in my diet as well as gluten and to get back on the candida programme.
    I mentioned my reccuring nosebleeds and itchy gritty dry eyes as i hadnt been able to get my GP interested in them -im so glad i did as she felt that i probably have a staph infection thats getting passed between my nose and my eyes -she said it can cause nosebleeds of the type i described and gave me some antibiotic ointment for my nose and eyes, she also linked this in with the lung and said it was likely to be staph in my lung too which was flaring up. she is going to ask my GP to do a swab for this if the ointment doenst clear it up. This just seems so simple and yet crazy that my doctor didnt pick it up -she was horrified to hear that after pneumonia, pleurisy and 10 months of lung infection no one had ordered a sputum sample. (I was very good and didnt get into slagging off other doctors -but it was nice for me that she commented on how badly i had been treated)
    Next she looked over my latest blood results from my GP and felt that my thyroid was a bit low (normal but my T4 used to be about 18 and is now 14) we talked through symptoms and i also mentioned my two postpartum bleeds after 2 of my children where born) and she has queried wether i may have mild sheehans syndrome (this knocks out a bit of your pituitary) i explained that i had never had problems with milk supply but she said this isnt always the case and that it can take years to manifest -so... on the basis of this we have decided to have a trial of thyroxine to see if it makes me feel any better -i have all the classic symptoms but my results are always in normal range. Im bit nervous about this as i always take the natural approach and i dont like taking medication -also i am very sensitive to drugs - she really understood this though and has started me on a really low dose -12 mg a day for 2 weeks then 25 then up to 50mg a day. i hope we can get my GP to help out with this as i will need my bloods monitored. She has supplied the meds i need for a while though and i was surprised because they were all cheap and her office dispensed them for me.

    She was very positive overall and said that now i was seeing some better days alternating with crashes meant that it was possible to recover abd keep those good days. She was very happy to hear that my sleep is more or less normal now and that my anxiety is very reduced, it was nice that she wanted to talk about the good things as well as the bad and she was very encouraging but did really impress on me that i needed to learn to do even less for a period of time so that i could get better. she also wanted me to sleep a bit more -maybe an hour earlier -but she wasnt insistent about it and smiled and joked her way through a lot of it.
    It was quite a surreal experience as i expected it to be a high tech sort of office with modern consulting rooms, but it was apparent she is not getting rich off of this -her offices were very normal and a bit chaotic looking -her staff were very helpful and friendly -their were chickens and cows roaming around and the loo was round the back in her boot room. The house though is in the middle of no where and the journey was long but beautiful -we live in wales too -also in the middle of mowhere so it was alll bit strange.
    We left it with me trying the new medications -tightening up the diet -learning to do less for now, trying to get some COQ10 and L Carnitine down me and seeing how it goes in the next 3 -6 months and then doing a phone consult to see how im getting on.
    I wanted to talk more about the detoxing and the blockages but ran out of time, when i mentioned it to one of the women in the office she said she could order the test i wanted but maybe it was better to wait and see how i got on with the thyroxine first in case it made a big difference so that i didnt have to waste my money. This summed it up for me - i felt they were really genuinely trying to help and also werent trying just to make money out of me or force me into one way of thinking.
    Hope i havent worn anyone out with all this -thanks for reading, Justy.xx

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