Mikie - question/Peptides

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Nikki, Aug 15, 2012.

  1. Nikki

    Nikki Member

    How would I find out about peptide injections in my city. Rheumy or PCP. What would I ask for. I'm assuming this is all experimental and not covered by insurance.

    At this point in time, I will gladly pay out-of-pocket.

    Beginning yesterday, my pain level from my fall is a tiny bit better . . . but, I am so sleepy all day, I can hardly do anything, even with 1/2 a Provigil.

    Thanks for all the information you have already posted on Peptides.

    Soft Hugs,
    Sharon
  2. vaster

    vaster New Member

    Hi,

    I just had my first appointment with Dr. Dakos for my 12 year old son. I have tried to do research with the information he gave and still there's not a lot out there. I read all of your posts but could not find anything recent.

    I am curious as to how you are doing now that your injections are complete and some time has passed? You were so positive in your posts despite your conditions and I am really hoping you still respond on this site? I am sorry if you have posted more recently...I could not find anything.

    Thank you!!
  3. Mikie

    Mikie Moderator

    The docs doing the peptide injections from Oxford come from different disciplines and they have to be accepted and trained in the treatment. Yes, insurance companies consider this experimental even though it's been in use in Europe for more than 30 years, so it's all out of pocket for the patient. Evidently there are some other types of peptides being used but are different from what I am getting.

    Dr. Dakos had his own website, DrDakos.com but it was down to conform to new FDA stds. So, the FDA approves this treatment, likely because American pharmas are starting their own research and trials for peptide treatments of their own. Oxford has not turned theirs into a commercial endeavor. I see Dr. Gomeringer, 239-768-5544. These docs don't have a list of all the docs doing this treatment but they know a few of them. Last count, there were only about 25 docs doing this in the US.

    I'm still tired from my fall two months ago. Doc said this is not unusual and that I'll likely just wake up one of these mornings and feel a bit better and continue to improve. I hope that happens for you too. Just take it easy because I've found you can't push through this kind of fatigue. Good luck to you. I keep you in my prayers.

    Love, Mikie
  4. Nikki

    Nikki Member

    I guess it would be OK to call Dr. Gomeringer since you included his phone number.

    Anything I should say or not say when I call. I'll probably do this on Mon.

    You've definitely been in my prayers, too.

    Soft Hugs,
    Sharon
  5. Manwithfibro

    Manwithfibro New Member

    Hi do you know of a list of docs doing this?

    Thanks
  6. Mikie

    Mikie Moderator

    They'll know what you are asking for. Just ask if there is a doc doing the injections somewhere near you. Dr. G. may not know. I think Dr. Dakos knows more of the docs involved. Don't know whether his website is up and running yet or not. If not, look up his phone in Fort Myers, FL. Good luck.

    Love, Mikie
  7. jaminhealth

    jaminhealth Well-Known Member

    Pendulum work and that could give you an idea of whether peptides could work for your body.
  8. Mikie

    Mikie Moderator

    And while I'm not a long-time user, I don't think I would let its use be the deciding factor in selecting treatments. It might be good for guidance. One can tell after the first shot whether they would be effective. In almost all cases they are, as long as one has an immune or autoimmune condition. If ones isn't sure of the diagnosis, it becomes more iffy. Of course, nothing works for everyone. My feeling was that it was well worth the $300 to try it. It's a personal decision for everyone.

    Love, Mikie
  9. jaminhealth

    jaminhealth Well-Known Member

    pendulum should NOT be the deciding factor to try the peptides....early on when Mikie talked about them I got kinda excited, then checked the prices here of the MD who does them and just too much $$$ for my income.....

    Plus, I remember one had to be off Advil and this otc pain med helps me SO MUCH....it would be hard for me to take that leap.

    One major reason I haven't leaped for an Epidural of my spine is one has to be off Advil 3 days or so....perhaps if one could "try" an epidural and stay on the Advil, I would have tried one...I have 2 scripts to get them but never have.....

    Plus the cortisone injection in the spine scares me...

    I'm happy Mikie has had such great help with these...another person and I can't recall her name didn't and had 5 or 6 as I recall.

    So, if one can try them, they should go for them and see if they help their issues.
  10. Mikie

    Mikie Moderator

    Yes, they are expensive. I wish everyone who wants the treatment could get it. Not everyone would want it and it won't work for everyone. Can't recall whether the other woman, who had had a series of the injections without help, had RA or not. I do know that RA appears to be more difficult to address. The arthritis in my wrists and hands was the first thing to go away completely. It was once diagnosed as OA but that was before the deformity.

    Even though one should be able to tell right away whether the injections will help, they do three before they give up. The lab which previously did the plasma assays in Europe is closed and my doc didn't know how they would get them done. There are so many unknows with treatments and it seems our FDA has gone nuts so I figured if I wanted the treatment, I had better do it now, especially with all the financial problems in Europe.

    It's a shame you can't get help for your back. I can take acetaminophen but not ibuprophen near the time of the shots. Evidently, ibuprophen affects the immune system. I get headaches after I've been off my meds a couple of days. I hope they can find some way to help you. If something isn't the result of an immune reaction, the shots don't seem to work, at least, the ones they have now. Maybe down the road...

    Love, Mikie
  11. jaminhealth

    jaminhealth Well-Known Member

    stuff is structural and all since the hip replacement 22 months ago....have dealt with OA since 18, and lived with it and managed, but the surgery did it, kinda did me in.

    It's structural, body shifts with replacements and I don't think peptides can help shifting of the body. That's how I came to my conclusion on my issues..

    I also have some OA in my right hand, some 25 yrs in my thumb, but it's liveable...

    Some do surgery for spinal stenosis but back surgery is the last thing I want to do.

    The Mesotherapy Injections do help, and will give acupuncture a go next week....this is affordable for me and Medicare does come into help with these treatments. jam
  12. Mikie

    Mikie Moderator

    The injections do nothing for structural problems. Some of your problems may have even started before the hip replacement. When hip or knee joints are bad, we cope by shifting our posture without realizing it. Then, we get surgery and everything shifts again. If a person has structural problems with the spine, this effect is only exacerbated.

    I hope and pray you can get some help.

    Love, Mikie