How many have a competent doctor for CFS/FM?

Discussion in 'Fibromyalgia Main Forum' started by MicheleK, Jul 21, 2012.

  1. MicheleK

    MicheleK Member

    I travel eleven hours to be seen by specialist in CFS & FM. After years of trying locally to have a doctor who knew what they were looking at and how to treat me, I decided I was done being in that position. I wondered how many here ont he board felt they had found a competent doctor locally and feel they are getting good treatment. Of course, good treatment means the latest available knowledge on the illnesses.
  2. mbofov

    mbofov Active Member

    There are no doctors where I live who know anything about CFS. I do have two doctors now that know about CFS and both are about 2 hours away (one is 2-1/2 hours away with traffic), so much closer than your 11 hours! I would not be able to see someone 11 hours away.

    I'm on a good supplement regime from my own research and from the 2 doctors. However, no one has been able to do anything about post-exertional malaise and I'm hoping the mercury detox I've had to postpone will help with that. But will see.

    A good resource for finding an integrative medicine doctor is - maybe you could find someone closer -

  3. Jittle

    Jittle Member

    I have a pretty good pain management nurse I have been with for years. But as far as doctors, yeah, still looking. My rheumy doesn't seem to care or know a lot about fibro. He cares more about arthris. He believes fibro can be cured with good sleep and talk therapy. I was given the name of someone who "may" be a great doctor according to what information I was given. I just have to get there: They cancelled my appointment due to the doctor having an issue and leaving early, and then I had to cancel the new appointment. I am calling Monday to make another appointment.

    What makes me upset is that I learn about most fm/cfs information from the internet, and I get confused. I should be getting the information from the doctors I PAY. For me personally, doctors around here just write prescriptions, and never really try to figure out what is going on.
  4. Mikie

    Mikie Moderator

    I had a PCP who knew nothing about our illnesses but he was willing to learn and help me. I did the research on various treatments from legit docs and brought their articles and papers to him. We tried things empirically and I started to heal. Unfortunately, he dropped out of my ins. plan.

    I found a sports doc who was studying our illnesses and he helped me a great deal. We were true partners in my healing.

    My new PCP and his PA were just so ineffective that I was looking for a new one when I went to the seminar given by Dr. Dakos and Dr. Gomeringer. Dr. Gomeringer is a PCP in my plan's network so I switched to him. Both these docs work with the peptide treatments from Oxford Univ. They are experts in immune and autoimmune illnesses. My peptide injections are working and I'm thrilled to have found my doc. I don't use the c word, cure. I'm 3/4 of the way through the treatment but I still have fatigue, possibly from my recent fall. Only time will tell. In any case, I'm much better off than I was before I found my doc.

    Love, Mikie
  5. MicheleK

    MicheleK Member

    So many patients have their backs against a wall. Their PCP will send them to a Rheumatologist, then the Rheumatologist isn't even up to date on the illness they were sent (passed off) to. That is a frustrating situation.
  6. Mikie

    Mikie Moderator

    Rheumys are pretty good at diagnosing FMS, that is, if they even believe in it; however, most don't seem to have anything much to offer in treatments. My specialist was a sports doc who kept having patients coming in with pain in the same tender points. He started learning everything he could about it. He was hungry to learn more. He started learning what he could about CFIDS/ME because he was seeing that along with the FMS. He was vital to my healing. It's hard to find these docs but they do exist.

    My current doc is very, very smart and I'm so glad I found him and his peptide treatments. It is turning around my illnesses.

    Love, Mikie

  7. Mikie, do you live in Florida by any chance? Because I'm in the panhandle and haven't had any luck finding a competent doc to help me. I have both FM and CFS/ME and had to travel 12 hours, similar to Michele, last year to a specialist to get the diagnosis confirmed of ME/CFS.

    A year prior to that, I had traveled 3 hours away to a doc who was certified to do chelation. Unfortunately, after the first treatment, I had such an adverse reaction, I couldn't do the chelation anymore. He is the first doc who suspected that I had ME/CFS based on my history and symptoms, although he doesn't specialize in ME/CFS. But he is the one who got me started on the peptide shots. He gets his from a research lab in France, though. I wonder if there's any difference between the peptide shots I get verses the ones you get from Oxford... not sure if they're helping or not... I was off of them for a while, and just started back a couple months ago.

    But if you're in Florida, I would so appreciate knowing where, on the outside chance I could try your doc who has been so helpful. Thanks so much, Mikie! And thanks Michele for starting this thread!

  8. Mikie

    Mikie Moderator

    Yes, I live in Ft. Myers, which would be a bit of a trip for you. I see Dr. Gomeringer but Dr. Dakos does the peptide injections too. There are various labs which make peptide sera for treatments. I believe mine comes from England but am not sure. When I've gone online to try to research the peptide treatment, I've found lots of lab websites touting their peptide sera for sale to docs. If a person is on the right peptide serum, it is almost immediately obvious. If after three injections, there is no improvement, the injections are stopped. My arthritis left for good the night of my first injection. My mouth watered like a faucet but the Sjogren's symptoms occasionally came back but only usually for a day. All my symptoms are gone, except exhaustion. I had a bad head injury two months ago and the doc says the exhaustion is likely from that. I believe him because prior to that I had had some times of energy.

    I know that there are peptides used in different treatments. I think it is the protocol developed through Oxford which is the one with the success in treating immune and autoimmune illnesses. These docs here have to keep up and study all the time. They also travel overseas for serminars. There are new peptide sequences being developed for all kinds of illnesses.

    The peptide I take is the HS, a wide-spectrum sera for immune and autoimmune illnesses and where inflammation is present. There were a couple of times when I didn't think the shots were effective but the doc had warned me that this is common as one gets into the treatment.

    Good luck to you.

    Love, Mikie
  9. rosemarie

    rosemarie Member


    Your post sounds just like what my rehumy tells me. HE thinks I needs my knee's replaced asap and can't accept that I don't have the money to get them fixed. If not get knee's replaced then I need to get hylqronic acid injections which I have tried one time and was in so much pain that I would not finish the three shot round. For my fibro he claims that Lyrica will cure me and there is no way I am taking it. I am one who reacts to the strange , unusal , weird , never heard of side effects or complactions. If it is strange and not the "normal" reaction I will have it.

    I have been like this all my life and I have tried so many differeent meds to get me off narcoitcs {That is the issue with my rehumy he does not like to prescribe painmeds for my fibro, end stage eosteo-arthritis,buldging disc's,Chronic meyofacial pain syndrome ect.} It does not matter that in the years since he has been my rehumy I have reduced the dosage of my pain meds big time.
    <BRWonder if they teach doctors in medical school to blow you off when you have an illness in which they don't either understand or believe in?
    Hugs Rosemarie

    [This Message was Edited on 08/16/2012]
  10. I haven't been able to get on here in over a week... bad flare in my CFS/ME. (Am I the only one who finds that mental work, even reading, can be as draining as physical work?) But I wanted to thank you for your response!

    I'm not sure which type my peptide injection is... will have to check. But I sure wish I lived in Ft. Myers right now! What a blessing for you to have such a competent and devoted doc! So happy for you! I keep praying for one here in my neck of the woods! Also, I pray that ALL who suffer with this debilitating condition would have a doc like yours. Maybe some day.... praying it's sooner than later! Thanks again and God bless!

    Hugs and Blessings,