Last (#12) Peptide Injection

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

  1. Mikie

    Mikie Moderator

    Yesterday was graduation day for me. I got my last peptide injection. Doc says as well as they have worked for me that he doesn't think I'll ever need to come in for a booster shot.

    I asked about the exhaustion and he said it was the head injury from my fall which messed up my sleep pattern and was causing the exhaustion. He switched me from clonazepam to lorazepam but I didn't get the Rx til today. I'll try it tonight. Last night, I took an extra .5 mg. of the clonazepam and slept soooo well. I woke with a load of energy and did a lot, relatively speaking, with no fatigue. I'm so relieved to know that it was the concussion and not my CFIDS/ME.

    My apahsia, memory problems and cognitive issues have vastly improved. I'm even doing well playing along with "Jeopardy." He said sleep issues are the last to heal with head injuries and it can take time. I'm not a patient person but will gladly wait as I know I'm healing, just not as rapidly as I'd like.

    He doesn't call the injections a cure nor even a treatment. He calls it retraining the brain to make the proper peptides. I thought it was the DNA not switching on the glands for saliva and tears. He said the switches were always on but that the brain was blocking the flow from the glands due to incorrect peptides/proteins. He said all autoimmune diseases are chronic problems in the brain. The newest treatment in Europe is putting the correct peptide sequences directly into the brain. I didn't ask how they were doing it. I know that some treatments are now being inhaled but he didn't say that. He said it will be years and years before the FDA approves that approach here. In the meantime, the shots are available if one can afford them and find a doc who does them.

    The FDA insistes that they be called "amino acid solution injections" and the docs must conform to that verbage. A rose by any other name...

    Thank you all for your support and interest in my year-long oddysey through this treatment. Oh, excuse me, brain retraining :) I'm glad I did ask because I now think I understand how this treatment works better than before I talked with the doc. A lot still escapes me but I'm no medical professional nor scientist. What matters most to me is that it worked! Woohoo!!!

    Love, Mikie

    Just thought I'd let y'all know that the peptide injections have been a resounding success! I wish everyone could get this treatment and that it would help. I'm thinking it'll be available eventually but getting insurance companies to pay for it is another question.
  2. Waynesrhythm

    Waynesrhythm Member

    Hi Mikie,

    I've read some of your posts on and off for the past year, and have been impressed by the progress you've made with the peptide treatments; congratulations! So much of your experience falls in line with my own long held perspective of disrupted brain function being a primary factor in CFS.

    Your experience tends to confirm for me that for most of us, meaningful progress is more likely to come by newer and nonconventional approaches, such as what you've done, and perhaps others such as epigenetics. In this regard, I wonder if you've considered whether your peptide treatments influenced your epigenetics and gene expression. My own take is that it probably did, though to what degree I wouldn't want to venture a guess.

    To get to a pragmatic question, I was wondering what your total cost was over this past year for all 12 treatments. I'm sure you've mentioned it in the past, so my apologies for not having the energy to peruse some of the older threads. I'm currently initiating a second try at some innovative homeopathy, and if it doesn't work any better than last time, I would be inclined to explore the peptide treatments, if I could afford it.

    Again, many congratulations on your success. I'm always delighted (and encouraged) to hear stories such as yours. I've also wondered whether Richvank ever passed along some news of your success with CFS researchers and practitioners he was in touch with, or whether you've considered contacting some of them yourself. This all sounds very promising, to me even more so than the potential from ultra expensive alternative treatments such as Ampligen.

    All the Best, Wayne[This Message was Edited on 11/11/2012]
  3. Mikie

    Mikie Moderator

    Thanks for your interest and support. I had the same impression as you that it was an epigenetic problem but the doc said it isn't. The epigenetics which are responsible for all the on and off switches were not the problem. As I mentioned, the switch on my salivary glands and oil glads under the eyes, which make tears, were always open. He said immune illness is "always" (his words) a chronic condition of the brain. I'm sure many of us have some genetic problems, and I think our illnesses are genetic in nature in terms of running in families, but the mechanics of how these illnesses are expressed are in the brain. So, the peptides evidently do not correct genetic damage; they simply retrain the brain. Again, most of this is waaaaay beyond my ability to fathom but I think I have a bit of a clearer picture now.

    My injections cost $300 each with no co-pay. So, I've spent $3,600 on this treatmment. I've heard about other docs' charging more. My own doc says he only breaks even with the injections. They keep the sera in a vault.

    Good luck with your treatment; please let us know how it's going. At least, if it doesn't work out, you can try to find the peptide treatment close to you.

    About the lorazepam--I'm still woozy today, something that the Klonopin/clonazepam never caused. My friend, a nurse, said the clonazepam probably hadn't cleared my system, because of it's long half-life, before I took the lorazepam so I got a big dose. I'll try again tonight but if the side effects persist, I'll go back to just the clonazepam.

    Love, Mikie
  4. Nanie46

    Nanie46 Moderator

    Great news!

    I'm very happy for you, Mikie!!

    Wish we could get together and celebrate!!
  5. Mikie

    Mikie Moderator

    Thanks so much for your kind good wishes. I also wish I could bring all my Online Family down for a big party.

    Love, Mikie
  6. mbofov

    mbofov Active Member

    That is fabulous new!. I am so glad the injections worked out so well for you! And thank you for chronicling your odyssey and for the explanation your doctor provided. It's very interesting. Hopefully some day here in the U.S. we'll start to catch up to rest of the world - well, Europe at least.

    About sleep - there are a couple of amino acids which can really help with sleep that you might want to look into. One of them is glycine. Gelatin (plain old non-flavored gelatin) is very high in glycine. Unfortunately, it is also used by the body for detoxification. I tried it (I dissolved one packet of plain gelatin in water and just drank it before bed), and slept quite well. Unfortunatley, I had a very strong detox reaction so could not continue. I plan to try it again at a much reduced dose. However, my sister took it with no problems whatsoever (and slept better) and I think if someone does not have a problem wtih detoxing, they should do well on this. It helped another friend as well, with no detoxing problems, although she had quite vivid dreams. It's also good for hair, skin and joints, which is partly why I want to try it again.

    Taurine is also good for sleep. And I tried this unwittingly in the form of magnesium taurate. I found out after a week or two that taurine is also a diuretic. My blood pressure sort of tanked on it, went down to 97 or 100 over something, too low for me. But others take it with no problem for sleep. So it was a probably a matter of dosage but I do seem to be the canary in the coal mine when it comes to many things that others can tolerate quite well. And taurine also aids detoxing, my achilles heel.

    One last one that I do do well on is ornithine. Hulda Clark recommended it, and I have no bad side effects with this one.

    Just some suggestions if you want to try other things for sleep, or maybe as an adjunct to help keep your clonazepam or lorazepam doses low.

    In any event - I am really happy for you! It is such good news!

    Take care -

  7. Mikie

    Mikie Moderator

    I appreciate the suggestions. As it turned out, I had severe reactions to the lorazepam, including labored breathing, nausea and hallucinations. The drug kept recycling through my system over and over. By the evening, I was seeing black bugs crawling on the walls where there were none. I was high all day and the effects scared me. I'm not touching that drug again. I'm back to my clonazepam and just taking a bit more.

    Since I am slowly recovering from the head injury, I will just accept that it will take some time for my sleep to normalize. I'll also look into the suggestions. Thank you both again.

    Love, Mikie
  8. Waynesrhythm

    Waynesrhythm Member

    Hi Mikie,

    You’ll probably recall I’ve put a fair amount of attention on structural issues in the past, and continue to believe they are often an important issue for pwCFS. My own experience with Atlas Profilax (AP) was a critical treatment for myself, and I still sometimes shudder when I think of where I might be today had I not discovered it.

    In this regard, I thought I would share a few thoughts regarding concussions. I myself had a severe concussion at age 15, which resulted in my brainstem becoming compressed, and which was alleviated to a degree by doing the AP. But I believe my concussion also resulted in other dysfunctions, some of which almost assuredly contributed toward my CFS.

    So, a story: A number of years ago, a friend of ours (about age 45) fell and sustained a serious head injury. Over the ensuing weeks and months, she gradually began to experience more and more CFS type symptoms (not sure if she ever received a diagnosis). She eventually ran into a man who shared his own remarkable experience with her.

    As a child, this man had been struck in the head by a picture that had fallen on his head in a retail store. This caused him to have seizures from that time forward, into adulthood. He eventually heard about a therapy called Neurocranial Restructuring (NCR), which involved inserting a small balloon into the sinuses and then inflating it. After having this done, his seizures stopped completely.

    Since my friend was not getting any meaningful help from her health care practitioners, she decided to do this therapy as well. After having it done, she began to make remarkable improvements with her CFS symptoms (which are almost identical to post concussion syndrome). The last I heard, she had recovered almost completely from her head injury.

    Since I didn’t have the $1200 it cost for this therapy (which generally spans a time of four days), I decided to see if a practitioner was available locally who did this. I eventually found an ND who had used it for years, but instead of charging $1200, he charged his normal office visit fee of $50. In short, this procedure was almost as miraculous for me as the AP, as it finally freed up some of my cranials which had become “locked up”, and unable to “breathe”.

    The NCR is actually an embellishment over the “balloon angioplasty” that my ND did for me, which in turn was a technique that had been taught for many years to students going to Osteopathic school (but I believe has since been discontinued). So, to get to my point:

    I thought I would post a link here to a testimonial on the NCR website. It’s a fairly long testimonial, but it does give a pretty good description of what this therapy entails. It also mentions a number of other “structural” therapies she did in conjunction with the NCR, some I’ve never heard of myself.

    I’m sharing this with you in case this might sound intriguing to you. If so, I would guess there are various health care practitioners in your area doing any number of the therapies mentioned in the testimonial. If what you’re dealing with is structural, I think it’s possible one or more of these therapies could speed your recovery from your concussion. Ya never know, right? And I seem to remember you’re the kind of person who doesn’t like to leave any stone unturned (you persistent warrior, you). :)

    Best Always, Wayne
    [This Message was Edited on 01/10/2013]
  9. Mikie

    Mikie Moderator

    Thanks for this info. I really appreciate it. There are so many treatments out there which are not well known but which work. I'm so glad these treatments have helped you and others. The brain remains an enigma in so many ways.

    I've been asleep for days. The lorazepam really did a number on me. Thank God the hallucinations and other side effects left that night, I've been unable to stay awake. This morning, I woke feeling like my old self. Even if I do nothing, the doc says the head injury is continuing to heal so I'll check other options but feel good in knowing that this is likely not permanent.

    Thank you so very much for your kindness in sharing. I think a lot of other members here will be interested too. You have always been a fellow warrior and you don't let obstacles get in your way. You find a way around them. I'll check out this website and, thanks again.

    Love, Mikie
  10. deepak

    deepak Member

    Your story is SO hope inducing for so many here.

    VERY happy for you - after SO MUCH struggle to finally be well.

    All you people in USA - just go try it !! heh

    With love,
  11. MicheleK

    MicheleK Member

    Hi Mikie,

    I am so happy for you that the peptide treatments were so helpful. And really, that is not a lot of money for something that works!

    I hope your reaction to the drug recently will leave your system in peace. A fall takes but a moment. Recovery obviously takes a long time. I am glad you have such an attentive doctor. He has alleviated a lot of fear. Fear is such a stressor. Knowledge is power.

    Love, Michele
  12. Mikie

    Mikie Moderator

    Thank you both so very much for you kind good wishes. I really appreciate them.

    Yes, the $3600 I spent for the peptide injections is about half of what it can cost to see one of the experts in our illnesses. Unfortunately, for so many of us, that can be a hardship. I was lucky because the money fell into my lap unexpectedly out of the blue. What makes me so happy is that it wasn't a waste. The treatment worked. I can tell that if my sleep weren't messed up, I would feel really well. Heck, I feel well now, just a bit tired. Yes, it's very helpful to know this is a normal result of a bad fall and head injury AND that it will eventually improve.

    I had started to improve but the exhaustion was so profound that the improvement wasn't enough so that I could function half-way normally. Today, I got up, cut my hair, showered and have been cleaning my baths. I'm resting in between but I'm actually getting some work done. I haven't felt this well since before the fall.

    I don't really understand scientifically how these injections work but I've tried to keep y'all updated on how they have affected me. As I continue to heal from the fall, I should feel really well. I've been sick 22 yrs., the last 12 the worst. I will never be the same as I was before I got sick but I think I'll be as good as though I was never ill, just older. None of my friends is the same as 12 years ago. We age; we can no longer do what we used to do or if we can, just not as fast.

    So many of us have been so horribly ill that we don't expect the health of a 20 yr. old. We just don't want to be sick. We want lives that are "normal." That is not too much to ask.

    Thanks again for all the support.

    Love, Mikie