Peptide Injection Six Update

Discussion in 'Fibromyalgia Main Forum' started by Mikie, May 10, 2012.

  1. Mikie

    Mikie Moderator

    I don't have good news this time. I never noticed anything when I got the last shot. Now, I'm in a painful flare with Sjogren's symptoms included. I'm not sure why or what happened. As y'all know, most of my experience has been positive but I want to let everyone know the good along with the bad. I'll update when I have something to report.

    Love, Mikie
  2. mbofov

    mbofov Active Member

    I'm really sorry to hear this - there seems to be no rhyme or reason to it!

    Does your doctor have any idea why some or most of the time you have positive results, and then suddenly don't?

    I hope you feel better soon - do keep us posted -

  3. deepak

    deepak Member


    You are like the beacon of hope so it is particularly disappointing to read this.

    I hope this is just a temp thing and will go away real soon ! :)

  4. Nanie46

    Nanie46 Moderator

    So sorry to hear this Mikie.

    Praying that this is temporary and you will have improvement again very soon.
  5. Saoirse3

    Saoirse3 Member

    Boy we get kicked to the curb when we get our hopes too high, don't we? But I would do the very same thing as you are, and you're an inspiration to all of us.

    Hopefully, this is just a temporary setback and things will be back on track soon. A sick eagle is a heartbreaking thing to watch, as he roars around his mew trying to be free, then realizes he's caged and sits on his perch for hours, just staring. But then the day comes, he's loaded into his crate, carried to his home. The door opens and he spreads his 7 feet of wings out, takes off and soars.

    YOU are that eagle, Mikie. And soon you will soar with him!

    Soft hugs,
  6. Mikie

    Mikie Moderator

    Thanks so much for all the support and kindness.

    I've figured out that I'm having a Herx. I don't know why, but when I Herx now, my body can't handle anything else. My Herxing is less and less often now and is far less harsh so I don't immediately recognize Herxing as I once did. My guess is that the injections normalize my immune system and if there are pathogens present, new ones or old ones trying to reactivate, it will go on a killing spree.

    I know it's very difficult to understand what to expect from the injections. Healing isn't linear. Some shots work differently from others, or appear to work differently. In my case, the very first night of the very first shot got rid of my arthritis and it has not returned. That night, my eyes teared and I salivated profusely. Still, I've had some minor flares of my SS symptoms, usually when I've Herxed.

    I think people expect to go in, get a shot, and start feeling great. I can happen that way but it doesn't necessarily. Even when it does, it may not last long. For me, the first two shots worked like miracles. Shots three and four didn't seem to have an effect one way or the other. All this time, however, I was feeling better and better. I was told in the beginning to expect that every shot may not make me feel improved. Overall, the only symptom which has been difficult to get rid of is fatigue. I've had days in a row where I have high energy but most of the time, I have to ration my activities and energy.

    My friends and neighbors say there is no comparison with how I was before I started the injections. I know there is vast improvement but it's nice to have my observations confirmed. I'm just half-way through the treatment and have to be patient until my body has learned to produce the healthy peptide sequences. This time, I had a virus prior to getting the injection and I had been off my Synthroid and HRT for a month. I don't know whether this had an effect on the shot or not.

    I only post about my experience with the injections because I want people to know how they are working--for me. My experience may be totally different from someone else's. Each of us has to decide whether the injections might be helpful. I do not regret choosing this treatment option. I am healing but, as I've said, it's not linear. I can live with that. Another thing I was told is that the longer one has been ill, and the older one is, the less effective the shots will be. That doesn't mean they won't work; it just means they won't work as fast as if I were young and had only been sick a short time.

    I should expect it to take a year to train my body. That's a long time but my other treatments took longer and they didn't heal as well as the injections. A year goes by whether I get the shots or not. I chose to use that year to heal. I'm not going to sugar coat my experience. It wouldn't be fair and I want y'all to know what one might realistically expect with the usual caveat that we are all different and react differently to treatments.

    Again, I appreciate all the wonderful support you have provided. It really does help me navigate the waters. I will always tell you the truth about what I'm going through so you can decide for yourselves whether this might be right for you.

    Love, Mikie
  7. deepak

    deepak Member

    So if its just a herx its a good thing no :) It means temporary then.

    You write so well and in such a balanced way, I look forward to all your posts !

  8. Mikie

    Mikie Moderator

    Yes, Herxing is a good thing because it means pathogens have been killed off. Obviously, too many have died for my body to handle them so it is purging and excreting them through my sweat and diarrhea. It is temporary and should be finished up tomorrow. My headache is gone, thank God. Diarrhea probably won't last much longer.

    Then, if I'm lucky, my body can get back to the business of making good peptides. I should start feeling better.

    I think one of the most important things we can do is to learn our own bodies and how we react to various things. Now that I know I've been in a Herx, I can relax and know it will go away. I went out to two stores today and just walking from one to the other almost killed me. The sun felt as though it were frying me alive. I felt out of it and in a fog. I've been drinking water with lemon as it helps with Herxing and is good for my Sjogren's and interstitial cystitis.

    I'll do another update when I have something to report. Thanks again for your interest and support.

    Love, Mikie
  9. Kammie12

    Kammie12 New Member

    Hi, I've been reading around here for awhile now. Over a year ago I went to Dakos for injections, I only completed 3 as I felt I needed to continue more traditional testing which led to 3 positive Sjogren's results. After reading your posts, I have seen Dr. Grominger and will begin injections with him. I had the HS with Dakos, but since I have confirmation of connective tissue disease, we may use a formula for Lupus instead. Dr. Grominger (sp?) mentioned blood testing to determine an extact match formula...I was wondering if you had any info. on this and could explain this to me? Would the test determine where on the chain of aminos I need to be corrected or would it determine what the actual illness is?
  10. Mikie

    Mikie Moderator

    Your post is very interesting. One of the problems we face is the difficulty in getting our conditions diagnosed. It is almost definite that I have Sjogren's but my ANA is neg. Still, the symptoms are too obvious to discount. I've had CFIDS/ME for 22 yrs. and FMS for 12. So, Dr. Gomeringer is usng the HS wide-spectrum injection for me. It is commonly used for people like me with both immune and autoimmune conditions.

    If a person fails to respond to the injections, plasma can be drawn and used to
    match a person's condition(s) to the peptide sequence needed. Usually, they do three injections before stopping and doing this test; however, the test can be done at any time to help in determining the exact peptide sequence needed.

    In my case, the first injection had such a dramatic effect that we knew we were on the right track. Not all the injections have produced such dramatic effects. For the most part, I have no symptoms except some fatigue. Some days, my energy is high and some days low but I'm only half-way through the treatment. If I'm Herxing, like I have been, my energy is low and my Sjogren's symptoms may return at a much lighter level. Even when I'm tired, I'm never as exhausted as before I started the shots.

    Please let us know how you are doing and what you and Dr. G decide to to. Best of luck to you.

    Love, Mikie