For RichvanK

Discussion in 'Fibromyalgia Main Forum' started by elliespad, May 25, 2008.

  1. elliespad

    elliespad Member

    You may recall, I had started the Methylation (short version) a little over a year ago. Had some initial success, followed by a few setbacks. I had full thyroidectomy in Nov. 2007 and life has been hell ever since. Let me correct that, it has been HELL.

    Is there a short list of Dr's who are well versed in your protocol? I am consulting (actually phone consultations) with Dr. David Gersten in California. He indicated he has spoken with you a bit but is not well versed on the protocol. I worked with him several years ago and had a lot of success. I would still like resume the protocol, preferrably with someone in the Northeastern US. I see where you have recommended Dr. Karen Vrchota, but she is just too far for an initial consultation. Thanks for any suggestions.
  2. deliarose

    deliarose New Member

    Can you afford to run any tests thru Yasko? (its all out of pocket).

    Full disclosure: I haven't run a single test thru her,but I'm resigned to finding the money because I think she just knows it better than anyone and can save you a lot of time, money and hassle by making this protocol work.

    Of course, one still needs a doc for Rxs (even B12) and to order the tests one can't afford to run thru yasko.


  3. richvank

    richvank New Member

    Hi, elliespad.

    I, too, am sorry about what you have been through over the past year.

    I'm constantly trying to recruit more physicians to using treatment to lift the methylation cycle block in CFS, but so far there aren't very many. As you may know, physicians must be cautious about trying new treatments for several reasons. It is therefore not easy to launch a new one. I hope to have an article about the Glutathione Depletion--Methylation Cycle Block hypothesis for CFS published in the IACFS/ME bulletin soon, and this may help to get the word out to more of the physicians who specialize in treating CFS. The editors of the bulletin did not want me to be very specific about the treatment at this point, though, until there is more clinical evidence for it. They do not want to be in the position of advocating a treatment that is new and untested in a controlled way, and I can understand that.

    There are several physicians who are familiar with this treatment because one or more of their patients have told them about it, or because they have heard about it from me, but only a few, so far, to my knowledge, who are initiating it in their practices.

    In the northeast, Dr. David Bell of Lyndonville, NY is using it in some patients, but I understand that he may not be taking on new patients, as he is near retirement. Dr. Alex Bingham in the Boston area has at least one patient who has told him about it, and I have interacted with him about it by email, but I don't know if he is initiating this treatment in patients himself. Dr. Anthony Komaroff at Harvard has expressed some interest in this treatment by email, and I've sent him the details, but again, I don't know if he is using it on patients. Dr. Derek Enlander in NYC has developed his own protocol, which does include supplements that support the methylation cycle block (but not FolaPro), and he has been reporting about a 70% positive response. He recently spoke about his protocol at Cambridge University in the UK.

    Outside the northeast, Dr. Neil Nathan in Springfield, MO, is currently running a research study using this treatment on 30 patients in his practice, and I think he has used it on about 70 patients overall. Dr. Karen Vrchota in Winona, MN, may have more patients on this treatment than any other physician (more than 100). Dr. Jacob Teitelbaum has been encouraging physicians in the Fibromyalgia and Fatigue Centers of America to try this treatment, but I don't know to what degree they are currently doing so. Yes, Dr. David Gersten has also expressed interest. I think that Dr. Michael Powell in Sacramento, CA may have some patients on the treatment or something similar. The doctors at Gordon Medical Associates in Santa Rosa, CA, may also have some patients on the treatment.

    There are also a small number of physicians who are using something like the full Yasko treatment (from which the simplified treatment was derived) on CFS patients. Dr. Nancy Mullan of Burbank, CA, is one of them. There is a cardiologist who has recently started using the full Yasko treatment, but I don't know if he treats CFS patients.

    Dr. Sarah Myhill in Wales is using her own "methylation package" as part of her treatment protocol.

    There are other physicians who have expressed some interest, both from the U.S. and overseas, but it is one thing to express interest and another to go ahead and try it. I know that physicians must be careful in order to do what's right for their patients, to protect their reputations, to keep their medical licenses, and to stay out of litigation, so I understand why they look things over carefully before committing to them.

    I hope you will be able to find a physician who will help you with this treatment. Based on your experience and that of others, with which you are familiar, I'm convinced that a person needs to be under a doctor's care while doing this treatment, to make sure the treatment is appropriate in the particular case, and to take care of any adverse effects that might arise in some cases.

  4. deliarose

    deliarose New Member

    who's the cardiologist?
  5. ETN

    ETN New Member

    I am one of Dr. Powell's patients and I am currently doing the metylation protocol. I started it a couple of months ago but had to stop it because of detox, or what we think was detox.

    I just restarted the protocol in the last couple of days and am feeling pretty good right now.
    I had a ton of energy yesterday. This happened to me before when I first started it.
  6. tooks

    tooks Member

    I used to see I doctor who practiced 4 days a week in Rhinebeck, NY and one in Albany. He treats chronic fatigue and I have just sent him Rich's papers. Though I have moved to another state, I keep in touch with him by phone and he asked me to send Rich's research. His brother treats autistic children in the same practice and they are definitely the complementary medicine sort of practitions though both are well qualified, experienced and board certified M.D.'s

    It is possible that he will be interested and from my conversations with him, he was very familiar with the type of treatment I am doing with Rich's protocol.

    You can google his website. His name is Dr. Steven Bock. He has a very busy practice with his brothe and another doctor, so it might be difficult to actually find out if he would be interested in supporting you on the protocol. He is definitely the type of doctor who loves to figure out puzzles and research things, so if he were willing, he could probably become familiar with it quickly. You might have more success reaching him at the Albany office, as it is less busy.

    I am trying to think how I can give you my name to use as a reference and to link with Rich's work. Are you on any of the Yahoo sites? If so, maybe I could find you there by username and I could share more...that is if you are interested in pursuing this.
  7. richvank

    richvank New Member

    Hi, deliarose.

    The cardiologist is James Roberts in Toledo, Ohio. His site is heartfixer dot com. I think someone in the CFS groups phoned his office and reported that he doesn't treat CFS, but I'm a little fuzzy on that, so it should probably be checked.

  8. deliarose

    deliarose New Member

    yes, i think mike d reported that.
  9. elliespad

    elliespad Member

    Rich, for that list of Dr's. Just what I wanted. I saw Dr. Bell about 5 or 10 years ago, was very warm and genuinely concerned. May give him a call. Dr. Bell and those in Boston are only about 4 hours so offer possibilities. Dr. Erlander is probably even closer. So thank you.

    Deliarose - Am currently seeing 2 out of network Docs so Yasko testing is, at least for now, out of reach. If I had a Doc who understood/treated using Yasko protocol, I think I'd find a way to get the testing though. Good suggestion, thanks.

    Tooks - I live less than an hour from Albany and know of the Bocks, there and in Rhinebeck. They have good reputation in the Complementary field and from my local Compounding Pharmacist. I know their initial consultation is something like $700 and that is what has prevented me from seeing either of them in tne past. But will keep them in my memory banks for future, thanks.