My experience with peptides

Discussion in 'Fibromyalgia Main Forum' started by panthere, Jan 24, 2012.

  1. panthere

    panthere Member

    Hello everyone,

    I noticed high interest in peptide injections lately so decided to write up my experience in case anyone is interested.

    Both my husband and I have CFS. We did blood work with Dr. Gruenn in march 09 (wow time flies). It takes a very long time to get the results back. So by the time I got mine (a year later in '10!) it showed that i have a virus in my bone marrow and need injections for that. Dr. Gruenn was very worried and said I needed to start them right away as it can potentially cause lymphoma. Now I kind of was a little sceptical about the results especially since they were a year old! So I decided to retest with another doctor who has been doing these injections far longer than Dr. Gruenn to see if i get same results. I did different treatments that year that i thought maybe changed my body since i was feeling a little better. After getting my retest results back (about 6 months or so), my blood showed different results. Supposedly no more virus in my bone marrow but indicated that i am a tier 3 patient (endocrine problems). Now this doctor said that Oxford would not let him give tier 3 shots because he needed to do more studying, another year or so. So he basically said that as of now, there is no shot that can help me. I do not think there is a doctor in US who can do these tier 3 shots unfortunately. So that is the story for me...

    Now, my husband also did blood work with me at same times. From Dr. Gruenn his results showed a lot of antibodies in his nervous system (shot called PD). He did shots to clear that. Felt a little better, but regressed after shots. We just got results of his latest blood draw from february of 2010!!! These showed a bone marrow virus as well as some hormonal issues. Now, his results showed a much worse bone marrow situation than mine and that he needed shots IMMEDIATELY or he would very likely develop lymphoma. That's actually what it said on his test results. So, of course he would like to get started but apparently there's some issue with production of shots (lab moved, etc...) and there could be a wait of 2 more months or so.

    But my doctor told me a lot of success stories with these shots. Getting off cortef with one shot, getting pregnat, etc...So i would definitely suggest trying these shots to see if they work. Of course it seems testing as of now is haulted until they get new lab set up. So maybe trying just a general shot like Mikie does could be a good idea...
  2. mbofov

    mbofov Active Member

    Wow - that is a very long time to wait for test results, and for such mixed results for you. It must be frustrating and difficult to know what to do. I'm really sorry to hear there's no one in the U.S. who does the shots you need. It all sounds rather complicated.

    I'm not getting the testing done (at least not right away), will probably just get what Mikie did and hope for the best.

    Will post how I do -

    Best wishes,

  3. panthere

    panthere Member

    Yes it is definitely frustrating! But nothing to do i guess...

    One thing I forgot to mention. My doc said that sometimes once you clear one thing with shots something else will show up on the test. So the first round might not be everything you need. That's what happened with my husband.

    Good luck to you!
  4. Mikie

    Mikie Moderator

    Thank you for posting about your and your husband's experience with this. I do know that lymphoma is a risk when one has our illnesses. One of my clients, when I sold Medicare insurance, had FMS and developed lymphoma. I pray that you both achieve healing.

    I didn't realize that there were different tiers of these injections. I do know that my doc has 1,800 pages to read before his next seminar. Perhaps he's studying so he can do higher tiers of injections. What impresses me is the level of excitment the two docs here have when it comes to this treatment. One woman came in with Lupus. She had the butterfly rash on her face. One shot and she felt much better and the rash was gone. Now, she may not have had systemic lupus but still, that is amazing.

    I'm not depending on these injections to be a panacea for all my health issues. I have high BP and have to take meds for that. I am hoping that when I feel up to exercising aerobically, I can lose weight and get the BP back down. High BP runs in my family so I may have to continue with the meds. About the only BP med I can tolerate at all decreases norepinephrine in the brain and interfers with sleep. So, low energy may continue to be a problem at some level.

    There did seem to be a shortage of the sera for a while just before I started my injection. I hope, as this treatment catches on here, that the lab can keep up with production.

    Thanks again for your input regarding your experience.

    Mary, best of luck to you.

    Love, Mikie

  5. panthere

    panthere Member

    I also have heard from my doctor that he has had a lot of success with this therapy. Just for regular people with simple problems, like inability to get pregnant and shots fixing them.

    We were able to get couple of shots for my husband to start. He took first 2 shots on Thursday and since then he said he's been feeling a little better. Hoping they will continue to work.
  6. Mikie

    Mikie Moderator

    I'm having a Herx-like purge right now. I have had stealth chronic infections and I think the shots are working like ABX and AV's to help my own immune system kill the pathogens. Could be I'm detoxing too.

    The shots may or may not be an instant panacea but mine are certainly working on several levels and my arthritis seems to be healed completely.

    Please keep us updated as we need all the annecdotal info we can get.

    Good luck.

    Love, Mikie
  7. deepak

    deepak Member

    Dear Mikie,

    Did you have osteoarthritis or rheumatoid ?

    Deepak :)
  8. Mikie

    Mikie Moderator

    I was originally diagnosed with OA in my hands and wrists. Now, because of the deformity, there may be some RA involved. For me now, it's a moot point so we won't pursue the issue with the docs.

    Love, Mikie