purchasing products

Discussion in 'Fibromyalgia Main Forum' started by Perrier, Jul 29, 2008.

  1. Perrier

    Perrier New Member

    My doctor's physician suggested that she try the Konynenburg (??spelling) methylation protocol;does anyone here know where one can purchase all the items at one source.

    Also, before beginning this protocol, I suspect it is important to get tested. I am a total novice at this.

    Information about point one and point two would be very very much appreciated.
  2. findmind

    findmind New Member

    Who CAN spell it? LOL!

    If you do a search under "methylation protocol basics" above, by title, you should find all the info you ever needed.

    I'm sure others will chime in here, and you'll get lots of answers....

    Best to you,
  3. Perrier

    Perrier New Member

    Thanks FindMind; I am looking things up. I note that I must have brain fog or something because in fact the protocol is for my daughter and my message was garbled.

    I have done some reading last night on this site and I am very worried and very frightened; a) about the permanent changes that can occur as a result of this protocol b) about the cancer potential c) about the extreme illness that the protocol can bring on

    MY daughter is highly highly sensitive to meds, and so I guess if she does try this it will be a grain at a time.

    Her doctor is part of the FFC group and he suggested she try this but I am vey scared about doing this in an unsupervised manner and we live in Canada and so the doctor is far away in the US

  4. findmind

    findmind New Member

    I am sure you are very concerned, especially if you have to come to the U.S. for her care; however, I truly believe that Canada has the best M.E. guidelines in the world!

    Have you seen the Canadian Criteria for Myalgic Encephalomyelitis? Look it up on this site. I believe with it, you should be able to find a dr. in Canada to treat your daughter, maybe with antivirals.

    How old is your daughter? Old enough to understand that sometimes "the medicine makes us feel sicker, but with time, it helps us feel better"?

    Also, google Dr. Byron Hyde, see if you can get his original book about M.E., or a doctor's referral that could treat your daughter.

    I wish you the best, and pray that your daughter will find the treatment that helps her. Maybe you could have the FFC send some of her blood to Dr. Sarah Myhill in the UK; she has a protocol that is helping many.

    As most patients with M.E. are extremely sensitive to any meds or supplements, start low and go slow is the norm, don't be afraid to use it. A grain can be just fine, and work!

    Again, the best to you and yours,
  5. Perrier

    Perrier New Member

    Please do not be mislead about care in Canada; as my daughter's GP put it: "it's dead in Canada" with regard to this illness; yes, the definition is very good but there are NO supports here; there is one Dr. in Toronto and she is not taking any new patients; Byron Hyde does not treat patients; though I agree he has done superb work and he is probably the only one; so in fact many many Cdns. travel to the US; they still treat this illness with anti depressants I am afraid; in fact I would say it is disastrous here compared to what is available in the US; at least in the US there are many physicians trying things; here there is no one trying anything; only Dr. Hyde is OK but I am not sure but if memory serves me I believe someone told me he has the illness; he has done a great deal but he does not really work as a practicing physician; I contacted his office and it is very difficult; he basically sends you elsewhere.
  6. findmind

    findmind New Member

    I am so sorry! I thought the Candn. guidelines had surely helped patients get treatment there. What a shame.

    You are very well studied, and I congratulate you. Because the methylation treatment is helping some, doesn't mean it should be undertaken lightly. I don't think the FFCs have "cured" that many either.

    Did Dr. Hydes's office have the names of any other dr.s for your daughter?
    If not, I'm not surprised; we really need specialists who understand the nature of the illness and who are dedicated to treating the patients.

    I hope someone here can help you more.

    The best to you and yours,