Dr Pall protocol help with pain, anyone?

Discussion in 'Fibromyalgia Main Forum' started by Djembe, Oct 15, 2011.

  1. Djembe

    Djembe New Member

    Hi all,

    Haven't been on the board for a few years. At that time (around 2007-08) Dr Pall's theories and protocol were making big waves. In theory, connecting the dots with CFIDS, fibromyalgia, MCS, myofascial pain and other elusive conditions including tinnitus. But checking through the archives I dont see a lot of discussion on these protocols recently, and almost no tales of great recoveries.

    Disappointing, but perhaps expected. There's been no shortage of theories and protocols that when applied are often are hit or miss at best. And those are not cheap supplements to stay on for an extended time.

    Still, I thought I'd ask if anyone did give this protocol a good trial and had any significant positive results. Especially if it helped with chronic pain, the type of lifestyle diminishing fibromyalgia and/or myofascial pain that usually leads into experimenting with meds like gabapentin or lyrica for any kind of relief. Dr Pall includes these conditions in his hypothesis.

    Personally, many of my CFS symptoms including overall energy and vitality have improved greatly in the past decade, but regional chronic pain in the low back area in particular, and overall myofascial/fibro stiffness and soreness remain. Yes it's great to almost beat one thing but brutal to then be kept down by something else. Have tried many types of treatments and bodywork for pain but real relief remains elusive (yep I know I'm not alone on this one!)

    Now wondering about possible metabolic common threads between CFS and chronic pain, hence my Dr Pall protocol question.

    Thanks in advance.
  2. richvank

    richvank New Member

    Hi, Djembe.

    I wonder if you have tried low dose naltrexone. On the CureTogether dot com fibromyalgia treatment effectiveness rankings, the fibro patients have rated it as the top treatment.

    On the CFS ratings, it is also pretty high.

    The Pall protocol is not on the fibro rankings. It is on the CFS rankings, but is in the bottom third of the treatments that have been ranked.

    There is also a Facebook site devoted to this use of low dose naltrexone as well as a Yahoo group on low dose naltrexone in general.

    Best regards,

  3. Djembe

    Djembe New Member

    Thank you Rich, I appreciate the reply and will look into that.

    I have recently read a few threads about the methylation protocol, sounds intriguing and I probably would consider it if my main symptoms were still CFS and chemical sensitivity related. But it sounded like it wasn't primarily intended for pain relief and taming those overfiring nerves involved in chronic pain conditions.

    Thinking aloud here, but do you think there is there a possibility that faulty methylation could be involved in the pain genesis of fibromyalgia, myofascial pain or chronic pain in general?

    Best, Peter
  4. TigerLilea

    TigerLilea Active Member

    Hi Peter - I did Dr. Pall's protocol for about half a year for CFS and I didn't notice any improvement in my symptoms at all. Dr. Pall felt that if people were going to have any signs of improvement that they would start noticing something within the first three months.

    My sister-in-law has FM and she found that low dose amitriptyline worked really well for her. She slept a lot better at night and the pain wasn't as severe and she was able to return to work.
  5. richvank

    richvank New Member

    Hi, Peter.

    I don't know. It may be possible. I haven't suggested using methylation treatment for "pure" fibro or other pain-dominated conditions, because I don't have a hypothesis to support it. I do have one for the pathogenesis and pathophysiology of ME/CFS that involves a partial block in the methylation cycle, and it seems to be holding up well as more is learned.

    I will mention, though, that in the clinical study that Dr. Nathan and I did on the methylation treatment, most of the women in the study satisfied the diagnostic criteria for both CFS and fibro, and the group as a whole reported statistically significant improvement on the visual analog scale for rating their "freedom from pain" from one to ten. They also reported significant improvement in "fatigue," "sleep," "mental clarity and "overall wellbeing," and in number of symptoms.

    With regard to the Pall protocol, here is Prof. Pall's assessment, published in the Townsend Letter in early 2010:

    "The use of multiple agent protocols where individual agents act to lower the NO/ONOO? cycle is an exciting and promising approach to treating these diseases. However, based on published and (to the extent I have access to it) unpublished evidence, none of these protocols produces any substantial numbers of cures."

    He went on to suggest changes in his protocol, but I haven't heard what the results of these have been.

    Best regards,

  6. Djembe

    Djembe New Member

    Thanks again Rich for the reply and thoughts. I've read about some of your work, and it's so good to know there are folks like you working so diligently for folks like us.

    And thanks Tigerlilea for the amitriptyline suggestion, actually that's the one medication I've already found where the benefits outweigh side effects. Sleep so much better on the lowest dose possible (10mg), but an experiment with upping it didn't really help the pain levels. Actually my nights are now ok (thankfully) but it's physically functioning through the days that's the challenge.

    In the past I've almost always had more success with natural protocols than pharmaceuticals or conventional medicine with these things, but now stumped and willing to look more into latter. Have talked to doc about lyrica or gabapentin and may give this route a try as well.