to mbofov re Myhill

Discussion in 'Fibromyalgia Main Forum' started by deepak, Jan 21, 2012.

  1. deepak

    deepak Member

    Hello mbofov,

    I am writing from India. Since a year I have been having symptoms of Fibro/cfs.

    Was going through the posts on this board and came across some old ones here mentioned you consulted Dr Myhill in the UK.

    Could you please tell me how effective she was and would you recommend her ? Was the micochondria testing worth it ?

    Thank you :)

    Love,
    Deepak
  2. mbofov

    mbofov Active Member

    The mitochondria testing was interesting, it did show abnormalities, but Dr. Myhill's recommendations were just what you can find on her website for supporting the mitochondria. I think she has very good recommendation so I'd suggest just trying her protocol and see if it helps you. It won't hurt at least. If you do have the money, then I'd say get the testing done, it is informative, but I don't think it's essential - you can still do her protocol without it.

    I don't have fibromyalgia but do have chronic fatigue syndrome. I know there may be some overlap and some differences.

    Have you looked into the guaifenesen protocol? Mikie on this board did it (or has been been doing it) and it got her off of morphine for pain. I don't have FM so have no personal experience with the guai protocol, but if I did, I would definitely look into it.

    Some other things that have helped me are a modified methylation protocol. You'll find a lot of posts about Rich Vank's methylation protocol if you do a search, but I got more help from a similar protocol devised by someone named Freddd on the Phoenix Rising board - here's a link (with Freddd's permission, moderators!):
    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics - essentially, I tried to eliminate all folic acid, which is synthetic and can interfere with absorption of folate, and started taking methylfolate (brand name Solgar, ingredient is called metafolin, which is the bioactive form of folate) and sublingual B12 (methylcobalamin by Jarrow), as well as carnitine fumarate, in addition to regular vitamins and minerals. After starting this my energy started to pick up and I found I had to take additional potassium. Freddd explains about potassium on his posts and why it may be needed.

    I also recently started taking the coenzyme form of B6 called pyridoxal-5-phosphate. I've been taking a B complex vitamin for many years, but once I started this P5P, my energy increased and I started sleeping better.

    Unfortunately, although I have been able to increase my energy in general, none of these things have stopped me from crashing if I do too much (more than about 3-1/2 hours of moderate exertion). So I feel better when not crashed, but still have to be very careful not to over do it.

    This is probably more information than you wanted but this is what is helping me. I don't know what is causing the crashing, it could be a virus or heavy metals, I just don't know.

    Good luck Deepak!

    Best wishes,

    Mary
  3. deepak

    deepak Member

    Thank you so much for your informative post and the link you gave on the b12 protocol.

    Which one would you recommend more - Fredds protocol or Myhill ? Also, what kind of potassium do you take and how much ?

    With love,
    Deepak
  4. deepak

    deepak Member

    Dear Mary,

    Is it possible we can be in a chat room at a designated time so we can exchange emails if its ok with you ? :) I am in India so I am in your future !! So you tell me a time thats good for you and I will adjust it to my India time and try to be in the chat room too.

    Love,
    Deepak
  5. mbofov

    mbofov Active Member

    We are all so different so what works for me may not work for you. And again, I don't have fibromyalgia.

    Having said that, I would say that Fredd's protocol helped me more. However, based on blood tests, it appears I have had a folate deficiency for several years but no doctor ever picked up on it or knew what to do. And so when I started taking the methylfolate (metafolin), my energy did pick up. But it was a couple of days later that I "hit a wall" so to speak and realized I needed more potassium (just as Freddd had predicted). I had to take around 800 mg. of potassium citrate for a couple of days and now take 400 mg. a day in divided doses.

    It's also very important to take B12 in methylcobalamin or hydroxocobalamin form, by injections or sublingually, while taking folate, and vice versa.

    And as I said before the pyridoxal-5-phosphate form of B6 helped my energy too.

    But magnesium I believe is equally important. for many people taking magnesium with malic acid helps with energy and FM pain. As Dr. Myhill says, it can be difficult to raise magnesium levels. Magnsium glycinate is a good form, and also I found that using magnesium oil (not really an oil) rubbed on the skin helps, also some people say that an epsom salt bath or soaking feet in epsom salt solution will increase magnesium levels.

    My recommendation is to try one thing at a time and see how you do. You may not need the folate but you might need the magnesium, or you may need both.

    Also, the d-ribose that Dr. Myhill recommends did help my energy for awhile.

    Several years ago l-carnitine boosted my energy a great deal but it only lasted a week. NADH did the same thing for me. I never noticed CoQ10 helping but take it anyways because my levels are low. Some people do notice a difference while taking CoQ10.

    So I don't really recommend one protocol over the other - I'd say try both, perhaps one supplement at a time, to see how you do.

    I wish it were simpler! But it's not --

    Best wishes,

    Mary
  6. mbofov

    mbofov Active Member

    You are in my future - Tuesday to be exact! That's funny. I checked - you are 13.5 hours ahead of me. I'm in California and right now it's 1:20 p.m. my time on Monday afternoon, so it's 2:50 a.m. Tuesday morning your time.

    How about we "meet" in the chat room to discuss things tomorrow at 7:30 p.m. my time (Tuesday here), which would be 9:00 a.m. on Wednesday morning for you.

    I've only done this once before so hope I manage to do it right. And if this is not a good time, just let me know.

    Best wishes,

    Mary
  7. deepak

    deepak Member

    Thanks :)

    Is it possible we can meet at 8 pm your time ? If its a problem, I will make it at your time 7.30 pm.

    Love,
    Deepak
  8. mbofov

    mbofov Active Member

    8:00 p.m. is fine. See you then!

    Mary
  9. french

    french Member

    The Breaksphere Hospital in the UK offers treatment for ME/CFS but it costs a lot of money.

    http://www.breakspearmedical.com/
  10. deepak

    deepak Member

    Hi French,

    Have you had experience which breaksphere or know someone who has had good results ?


    Love,
    Deepak
  11. french

    french Member

    Sorry, I didn't notice your question sooner. I don't have experience of the Breakspere Hospital but it has a good reputation.

    You can ask questions about it on the UK forums like Foggy Friends or ME/CFS Forums.

    http://www.mecfsforums.com/

    http://www.foggyfriends.org/forum/forum.php

    french x
  12. french

    french Member

  13. deepak

    deepak Member

    Thank you for the information :)

    Love,
    deepak
  14. rachel76

    rachel76 New Member

    I never recovered from her treatment. Her vitamins and supplements made me feel worse. I lost weight on her elimination diet. The EPD injections gave me more allergies. I think she made them up wrong. I wish I had stopped her treatment earlier.

    I don't recommend her as a doctor. I think Breakspear is overpriced too, although I have never gone there.
  15. simpsons

    simpsons Member

    hi

    I understand that some of the supplements are not tolerated by all. I agree that you should try just one at a time to see how you go. some have an immune system reaction to many things. As mary says you can find all the information on her website.

    the mitochondrial testing is i believe still done by john maclaren howard. it was pure relief to have the other tests done too for me. it showed that there were problems for me. it explained my pem, which was as basic as being caused by sitting up.

    i have managed to improve via q10 b vits in particular b12. I also take a large amount of cod liver oil. I also used a medical herbalist who was very good. i was lucky to find a good medical herbalist. it is important to get someone with ME to refer you to a tried an trusted herbalist i believe.

    As an alternative to q10 tablets the foods high in q10 such as pork (forgive me if this offends anyone's religion) can be researched.

    The best advice i got via dr myhill free site was to cut out chemicals, from toilet cleaners used to soaps and perfumes etc. these can block mitochondrial function which many pwme suffer from.

    i found the advice to cut out wheat was very helpful too. This reduced the muscle pain a lot for me. It is certainly worth a tryout for a few weeks

    so there are many changes you can make to help yourself without taking any supps.

    i wish you the very best with your search,

    I wonder if you had any information regarding herbal medicine in india you could share with us?

    Hope this helps
  16. deepak

    deepak Member

    Dear simpsons ,

    I too have cut off grain since 2 weeks and feel better somewhat.

    What soaps does she advise ?

    I am not yet taking q10 but will start and see how I feel. I do take L-carnitine fumarate though and it surely helps.

    What does cod liver oil help with ?

    Re Indian herbs - I have ashwagandha ( it is a mental and physical stress reliever and I have a lot of garlic - raw as well as in capsules ....I also sometimes have senna , fennel and psyllium seed husks which are helpful in clearing the digestive system )

    Love,
    Deepak
  17. rachel76

    rachel76 New Member

    Well with me Dr Myhill said that you have to take all the supplements at once otherwise you won't improve, not one at a time.
    I just got much worse on them. I think that the brands she recommended simply had chemicals that I could not tolerate inside them. Her elimination diet was more severe in the days that I went to her so I lost a lot of weight. I am not sure that automatically putting everyone on the Paleo diet is a great idea for everyone. Where is the published evidence that it helps "most" or "some" or "everyone" with M.E?

    I am very skeptical of the magnesium red blood cell test she does. I know people who were on massive magnesium supplements and took magnesium injections and yet they were still supposidly low on magnesium when they took that magnesium red blood cell test afterwards. There is very little proper documentation on that test too.

    A lot of her protocol is taking the ideas of Dr Teitlebaum and Dr Sinatra and claiming them as her own. I also do not agree with the Reiki energy stuff she used to recommend. I don't know if she still recommends that. I greatly worsened from her treatment but was unable to complain to the GMC about her because too much time had passed until I recovered enough to do it.

    As for avoiding any soaps and things with heavy artificial fragrances - that is just common sense for anyone with ME who suffers from chemical intolerances.

    Please be very careful Deepak if you chose to follow her stuff.
  18. deepak

    deepak Member

    Thank you Rachel. I am in India - not really following her program or planning to - just like to know what may be helpful and what has helped others :)


    Love,
    deepak