My visit with Dr Jon Russell

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by vivian53, Oct 11, 2013.

  1. vivian53

    vivian53 Member

    I recently had an appointment with Dr. Russell and learned quite a bit from him about treating this disease and wanted to share that here. I haven't been on the board in years and you may be all over this already. I also want to ask a question about lumps, but first about Dr. Russell. He is conducting a study about the effectiveness of Lyrica in lowering the level of substance P in the spinal fluid before and during the course of medication. He believes Lyrica is an effective if not the most effective treatment option available at this time. I was unable to participate because of a reaction I had to Lyrica of facial edema in the past but I still got to talk to him for four hours. I think the single most important thing I learned was that he has been able to isolate the genetic marker for FMS.

    We discussed my medications (Neurontin, Norco, and Adderall, Restoril) and he didn't really like any of them, especially the Adderall and I do understand why and agree it's not good for me but it certainly does the trick. He told me a story about a man who drove his mule to work harder with less and less rest and food every day until the mule just died. I liken my treatment regime to a house of cards. He also said he usually recommends people take and antidepressant like an SSNRI and a sleeping pill that he described as being similar to Rohypnol in that it causes people to fall asleep immediately with no sleeping pill hangover in the morning. He also recommended massage therapy and meditation along with vitamin D and stretching and walking. I can't take antidepressants either due to side effects but would if I could. I may at some point ask my Rhumy to try me on a low dose of an antidepressant like Elavil that could help with reducing pain and insomnia but I have a new doctor that uses Aruvedic medicine and I will try her recommendations since western medicine has taken me as far as I can go..

    Now my question for the board is about bumps or lumps. In recent years I have developed these lumps under my skin all over my body, some painful and some not, some small like 4 or 5 mm to being several inches long. I have hundreds. I've asked a bunch of doctors about them, even had a biopsy, and everyone, including Dr. Russell said they were Lipomas. They're not. I've heard them referred to ask Myoblobs which sounds appropriate. So no answer there. I wish I would have asked him if I could record our talk because there is so much I can't remember but did want to share about the genetic marker.
    Does anyone else have the lumps I've described and if so do you know the cause or treatment options.

    Oh I also wanted to say that I have Chronic Myofacial Pain. Dr. Russell said they were thinking of putting all these diseases together and labeling them as Soft Tissue Disease. Hmm STD, I think that's been taken.
    Vivian
  2. jumpshot

    jumpshot Member

    I've had CFIDS &FM for l5 yrs. I have a good dr. in Dale Guyer M.D. (INDY) since 2004 but even he hasn't been able to help a chronic symptom in my mouth throat and bronchials that feels like fireants and sandpaper all the time, I take loads of Neurontin which mask it, it started w/ dry dry non productive cough, one things helps reduce it for about 2 days he mails me a 400,000IU l cc shot of D-3 and I have it given w/ lcc of testosterone (is low) and it helps for 2 days (also helps energy) SO to your post this is compounded and modulates the immune sys. but you can only get it about every 4 months or more cause you can get too much D , so he test me quite often, IF U could find a dr. to discuss he could have that compounded for U it's about 8 0 bucks was 40, but the phar. went up on Guyer
  3. jumpshot

    jumpshot Member

    also you could buy Stablon off the net but it's expensive Dr. Cheney recommended when he treated 98 thru 2002, it supposed to support Hypathlmus, it does help depression but nothing else like fatigue
  4. veras

    veras Member


    Good for you to avoid drugs