For Mikie about Peptide Injections

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Saoirse3, Mar 15, 2013.

  1. Saoirse3

    Saoirse3 Member

    Hi, Mikie!

    I am getting ready to move to Atlanta, and while I know it isn't next door, I would like to know which doctor you went to for your peptide injections. I have a chance to have the entire course of the injections covered, but I would like to talk to the doctor first and make the arrangements. Secondly, how are they working for you? Just wondered if this will be right for me. Everything else has failed.

    Soft hugs,
    Stacey
  2. Mikie

    Mikie Moderator

    I just posted about my success with the injections on another thread requesting info on them. My doc is Dr. David Gomeringer and the other doc doing them is Dr. Dakos. Dr. Dakos used to have a website at DrDakos.com. They are in Fort Myers, FL. They may know if there is a doc in Atlanta who is doing the injections.

    Hope you like Atlanta. I love it there. It's only about 1 1/2 hrs. by plane to Fort Myers. If you see one of the docs here, it's possible he will send the serum to you to be injected by your doc in Atlanta.

    Good luck. I hope they are as successful as mine have been. My symptoms from arthritis, CFIDS/ME, FMS, and Sjogren's Syndrome are gone. Just found out that I am allergic to wheat and since I stopped eating it, the fatigue is gone. I'm in pretty good shape now.

    Love, Mikie
  3. lgrass

    lgrass Member

    hi mikie:

    so glad to hear the peptide shots worked for you. are u completely symptom free now. can u lead a normal life?

    my dr. is willing to try anything to help me get well. do you think dr. dakos or dr g. would work with her in trying the peptides with me.

    also do you know when the nasal ones will be avail from oxford.

    thank you so much for sharing info with us on your journey.

    warmly, lisa
  4. Mikie

    Mikie Moderator

    I am symptom free now but I don't know how to answer you about leading a normal life. It's been 13 yrs. since I first became bedridden most of the time. I'm older now and have not been able to be very physical for years. I still rely on clonazepam to get good sleep and it still works. I do, however, sometimes suffer from sensory overload which is controlled with a bit of clonazepam under my tongue. I don't like harsh lighting, loud smells, touch, nor confusing situations. I think this is permanent damage from my CFIDS/ME just as my fingers are permanently deformed from the arthritis, even though I no longer have arthritis pain and stiffness.

    Until recently, I still suffered from fatigue but discovered I was alllergic to wheat. I've felt much better since going wheat free. I think it's just too early to know how much energy I'll eventually have and how physical I will be able to be. I just finished the injections in Nov. and just found out about the wheat allergy a month ago. In six months or so, I'll probably have a much better idea of what I'm going to be capable of.

    I lead pretty much a normal life in that I live alone and take care of myself. I go out shopping, I cook, and I go out with friends now and then. I will be missing a birthday party on Sat. because it's being held at the Legion where it's noisy and they allow smoking. For me, that would be hell.

    What is gone is, as I mentioned, arthritis pain and stiffness; dry mouth and eyes from Sjogren's; hypothyroidism (no longer need Synthroid); and pain from FMS.

    I have been doing some deep cleaning in my condo. Once that is done, I plan to start working out in the pool and doing other exercises. I still have to pace myself. Just finishing the injections usually doesn't mean one is like before the illnesses, especially if one is older and has been sick a long time. I think there is a recovery time as one returns to a more normal life.

    The docs here have to see patients and give them one or two injections before they will ship the serum to a family doc in another area. Dr. Dakos may know the name of a doc in another area who can treat from the start. I am only guessing that the direct brain delivery system will be a nasal spray. I doubt they will drill into patients' brains. Other meds have been delivered through a nasal spray. This is only in the beginning stage of research right now and I don't know when the direct system will be available. My doc gets excited and talks about what is going on in research.

    Hope this helps.

    Love, Mikie
  5. lgrass

    lgrass Member

    mikie:


    sounds like you are leading a very full life. i wld be happy with even a sliver of that. i am really in a trough right now...been bedbound for 2 years and ill for 8+. I have an 11 yo son and have virtually missed his entire life...it' is heartbreaking for me. i feel at a loss right now because i have tried so many things and none have worked.

    i will try to reach dr. dakos office this week and see if there is a way i can be helped despite our distance from one another.

    i have heard another dr. talking abt vasoactive peptide treatments and wonder if there is nay relationship.

    anyway than you for your help and i am sooooo happy that you ahve regained so much of your life : )

    hugs, lisa
  6. Mikie

    Mikie Moderator

    Thanks for your kind words. I hope you can find help. Yes, it is heartbreaking to be so sick when you have kids. I was lucky in that my illnesses didn't bring me down until my kids were grown.

    I have not heard of vasoactive peptide treatments. Dr. Dakos office may be able to help answer that. He used to have a website but it was down due to FDA regs which caused him to revamp it. The FDA won't allow "peptide injections." It demands the verbage: Amino Acid Solution Injections. Whatever! A rose by any other name...

    I will continue to improve, I believe. Right now, I'm just getting used to what I can do with an old body which has been pretty inactive for a long time. Best of luck to you and, please, let us know what you find out.

    Here is Dr. Dakos' contact info:

    Phone: 239-939-7017(Office) or 239-896-3963 (Cell)


    Email: drdakos@yahoo.com or
    wmdakos@yahoo.com


    Location: 13831Metropolis Avenue
    Fort Myers, Florida 33912


    Love, Mikie
    [This Message was Edited on 03/21/2013]
    [This Message was Edited on 03/21/2013]
    [This Message was Edited on 03/21/2013]