First Peptide Injection Yesterday

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Dec 12, 2011.

  1. Mikie

    Mikie Moderator

    First, thanks to everyone for the amazing support and prayers. I pray for us all every day as I know all too well the toll these illnesses take on us. Sometimes, when I read others' posts, it breaks my heart.

    I vomited in the car on the way home (why didn't I take a plastic bag with me ?). I had a paper bag and used it and set it in the plastic tray for drinks to contain it. Yikes! It's difficult to heave and drive at the same time. The heaving and diarrhea let up about 2:30 in the afternoon. It left me feeling quite sick and my headache remained until bedtime. At least, I got some Excedrin and Guai in me and that helped with the pain. Geez, I had forgot just how painful FMS can be as the Guai has been taking care of most of it for years. I finally got into an Epsom Salt hot soak to ease the pain in my legs. Some of my neighbors are throwing up and having diarrhea so it may be a stomach bug which was coincidental to the shot.

    Last night, the Sjogren's symptoms went away. In fact, it's like someone turned on the faucet in my salivary glands and oil glands in my eyelids. I was salivating and tearing up like crazy. I couldn't believe it after having dry mouth and dry eyes for so long. I also noticed that the pain and tenderness were gone from my arthritic fingers and wrist. These were the last things I thought the injections would help. Also, last evening was the first time in recent memory when I didn't fall asleep at 7:00 or 8:00 in the evening. Good news is that the shots seem to be working. Yea!!!

    I'll still have to take it easy today. I'm skipping our Tues. morning condo mtg. Doc says with the first shot, I'll feel improvement but it will diminish, probably before I go in on the 27th for the second one. Eventually, the injections should get rid of the Fibro, Chronic Fatigue, Arthritis, Sjogren's and the interstitial cystitis. After the next shot, I will receive them on a monthly basis for somewhere between nine months and a year. I may need to occasionally go in for a booster after that.

    Thanks again for your prayers. Sending mine up for all of you.

    Love, Mikie
  2. Forebearance

    Forebearance Member

    Thank you so much for the report, Mikie!
    I'm so glad the shot is doing some helpful things for you!!
    That would be really great if you could keep feeling better from these injections.

  3. Mikie

    Mikie Moderator

    I really appreciate your interest and support. It appears that what has happened is that I picked up a stomach bug independent of the injection so I may not get all the benefits of the shot this time. I'll just have to wait to see when this bug clears my system. I'm a bit weak and lightheaded but otherwise OK. This crud is going around down here. One of my neighbors has been sick with it too.

    Arthritis is still better and so are Sjogren's symptoms. My BP med causes dry mouth for a bit after taking it but it doesn't last. I'm tearing in my eyes normally and am salivating normally too. This is enough for me. Perhaps, when the bug clears up, I'll see other improvements too. I get the second injection on the 27th so I don't have long to wait.

    Thanks again.

    Love, Mikie
  4. Waynesrhythm

    Waynesrhythm Member

    Hi Mikie,

    Congratulations on your initial success with you first peptide injection. It sounds really quite remarkable to have major Sjogren's symptoms relieved almost immediately.

    I just got back home from a 6-week trip back to the mid-west. Though I rested a lot, I feel I was able to meet some of the tougher challenges because of some progress I've made using Rife frequencies to treat my Lyme infections.

    I've not kept on on everything you've written about the peptide injections, but I seem to remember they target a malfunctioning immune system. If that's the case, then I would be very interested to hear how this works for you going forward. Perhaps it could help with Lyme infections as well. Have you by any chance heard or read anything about that possibility?

    Get well Mikie. :) Hope you can knock that bug out soon!

    Warm Regards, Wayne
  5. Mikie

    Mikie Moderator

    Glad you are making progress. The Rife is the big brother superstar of the lowely zapper. I got so much help from my zapper that I can only imagine how effective the Rife must be.

    There are different sera for these injections. The one I take is for immune and auto-immune conditions. I'll ask my doc about Lyme. One thing did occur to me: Perhaps the injection souped up my immune system and it killed off a bunch of pathogens. Only thing is that it happened almost too soon. I may have been about to Herx anyway and it was coincidental to the shot. The virus is the most likely scenario. If I do have a virus, I'm lucky that the shot did anything to help.

    Yes, that the shot addressed the Sjogren's symptoms right away was amazing. The doc had told me that improvement starts almost instantly and then wanes until the next shot. Any improvement is evidence that the shots will work so I'm very excited.

    There are only about 25 docs in the U.S. who do this. Mine is Dr. Gomeringer who practices in a group with Dr. Dakos. Dr. G is also my PCP. They know the other docs who do this and can steer you to one if you contact them.

    Thank you for your good wishes. I send my good wishes for your continued improvement.

    Love, Mikie
  6. inbetweendays

    inbetweendays New Member

    Could I ask--about how much these shots cost? since many of us have financial limitations as well. also i have very dry eyes--but not sjogrens-do you think it could help with just a bad case of dry eyes? thanks--peace to you
  7. Bunchy

    Bunchy New Member

    How does one contact this doctor from the UK? I remember you said they invented these in the UK but our healthcare system is very poor and I can't even find any private doctors that do these in this country?

    It must be great to have improvement in your Sjogrens symptoms :)

    Keep us updated on your progress!

    Love Bunchy x
  8. Mikie

    Mikie Moderator

    Thanks for your interest and questions. I know that this originated at Oxford but I've no idea how to find a doc outside the U.S. who does these injections. Dr. Gomeringer likely has colleagues in the U.K. and would know. Here, the injections cost $300 U.S. and no ins. covers them. It's a financial hardship but I figure if it works, it will be worth it.

    If anyone wants to contact Dr. Gomeringer's office:

    Dr. David Gomeringer
    13691 Metro Pkwy., Ste. 240
    Ft. Myers, FL 33912

    I don't know whether the injections would address dry eye or dry mouth caused by something other than Sjogren's. These symptoms often show up waaaaay before Sjogren's can be diagnosed. There is no doubt that I have Sjogren's but my ANA is still neg. Many of our immune and auto-immune illnesses take years to develop to the point that we know what causes the symptoms. It takes, on average, 6 1/2 yrs. to diagnose Sjogren's. People with CFIDS/ME, Lyme, Lupus, MS, and FMS can often tell their histories of the long road to a diagnosis and appropriate treatment.

    With this "broad-spectrum" injection, I should get benefits for what ails me. I am very impressed that people can have their plasma examined and a serum produced just for what ails them if the sera on hand isn't right for them. This should be a huge breakthrough in medicine which changes how we treat illnesses. A couple of pharmas here in the U.S. are doing trails for arthritis but their only interest is profit. There is no profit in the current injections, even at $300 a pop. Of course, the technique for producing the sera is proprietery because the scientists who developed it do not want it to be used for huge profits for big pharma.

    Love, Mikie
  9. Mikie

    Mikie Moderator

    It's been a week since that first injection and a week until I get the second one. After that, they will be given a month apart. I'm sleeping so much better but my overall energy is only slightly improved. I think that will take longer.

    My Sjogren's symptoms are gone (for good, I hope). It's so nice to salivate and have moist eyes. Yesterday, I ate a piece of plain bread without choaking. My salivary glands no longer ache.

    Yesterday, I moved a towel bar in my bathroom, requiring using a lot of torque to drive in a screw. I did it with my arthritic left hand without thinking. No pain, then or later. Yea!!! The arthritis in my wrists and fingers (worse on the left) is vastly improved. The swelling is way down too.

    My mental malaise is a little improved but I don't have a lot of physical energy yet so I'm a bit frustrated. The spirit is willing but the body is still a bit weak.

    Also, the last two days I Herxed despite the fact that I'm taking no ABX or AV's. It has to be my own immune system killing off pathogens. Herxing is nothing like the stomach virus I had last week. After 11 years of Herxing, I know the signs of the Herx. I am the Herxing Queen (sung too ABBA's "Dancing Queen").

    The doc said I would improve and then the improvements would wane. So far, so good. At least, I now know that the shots will work. They either work or they don't. The older one is and the longer one has been sick and, I assume, how much sicker, the longer one has to take the shots and the less likely they will be to provide big improvements which last right away. I consider these big improvements even though I have more than five conditions and have been very sick off and on over a 21-year span. Maybe I'll be one of the lucky ones who improves fast and with lasting improvements. I'll be anxious to see whether these improvements last for another week before I get my next injection. Then, I'll be anxious to see whether they last the whole month until the third injection.

    Sorry to be so long winded here but I know people have been interested in the peptide injections. We've all heard of, and tried, so many treatments, with mixed results that we get jaded toward them. Had it not been for the amazing results in Europe, I likely would not have given the peptide injections a try. They are not a cure. They train the body to produce proper peptides so it can heal itself. It is our own bodies which determine just how well the injections work. Healing occurs in the brain.

    Thanks to everyone for all the interest and good wishes. I'll keep y'all updated.

    Love, Mikie
  10. simonedb

    simonedb Member

    Hi Mikie
    I am interested too, haven't been around as much and just saw this but thanks for sharing and good luck. since getting dx w/ sjogrens this year I can relate to the difficulty with eating certain things, I hadnt made the connection until I just read your post on eating bread, I get dsyphagia w/certain foods and they can get stuck in my throat even, makes sense that its related to dyshagia....I have just become more of a soft food person over the years.

    Is this related to the research of candace pert who was in what the bleep? she's a famous scientist who has been researching peptides a long time. Its frustrating that since pharma sees no $ in it, it doesnt get picked up.

    Looking forward to hearing more.
  11. mbofov

    mbofov Active Member

    Thanks so much for all the info! Please be as long-winded as you like! This is fascinating to me. It is very expensive, but if it could cure my CFS, it would be worth it.

    I'm really happy for you that your Sjogren's symptoms are gone - that is just amazing.

    So do keep us posted - you're our guinea pig!

    Best wishes,

    Mary (the detoxing queen, also sung to the tune of ABBA's Dancing Queen, although it doesn't fit as well as herxing queen)
  12. Mikie

    Mikie Moderator

    Good to hear from you but sorry about the Sjogren's. My SS symptoms have only been noticibly present for about two years. The fatigue from it made me have to quit my part-time job. The SS fatigue is worse than that from CFIDS/ME and FMS put together. No wonder Venus Williams had to quit tennis.

    Because of the FDA and the proprietary issues involved in the making of the sera, the docs won't get into specifics and I had to sign that I would not try to figure out how it is done. They do give seminars and explain that our bodies make peptides (proteins) all the time. What causes disease is when the body no longer makes the proper peptides. The injections simply provide the proper ones and, eventually, the brain recognizes that it should make the proper ones on its own. I know this is very simplistic but that's about all I know.

    That this technology comes from Oxford University, and has been successfully used in the U.K. for more than 30 yrs., is what convinced me to try it. Also the docs here have had great success with them. In all liklihood, big pharma will figure out how it's being done and try to horn in on the profits. These injections from Oxford and their lab partner are not for profit. My doc is a very humble man but is considered a genius. He seems to get the biggest kick out of having formerly sick people get well again. Even at $300 a pop, he says he's just barely breaking even. Of course, he has a practice and does other things but money isn't his motivation.

    I wish we had scientific papers, like the ones produced by RichVanK for the methylation protocol, but I just don't think they exist for the peptide injections. I've always researched potential treatments but this time, I just had to take a leap of faith. Only time will tell but so far, the early results look good.

    Thanks for your interest. I hope your SS can be helped or cured. It's such a nasty disease. Who knew? It's only when we get it that we realize just how horrible it is.

    Love, Mikie
  13. simonedb

    simonedb Member

    hey Mikie
    thanks for warm thoughts and info! really looking forward to hearing more about your experiences with treatment.
    happy holidays!
  14. Mikie

    Mikie Moderator

    Happy Holidays to you too.

    I went online and tried to find out more about these peptides. I found some papers but I couldn't figure out whether they were the same thing as in the injections. What I found were so technical that I couldn't figure them out. Also, many of them were at least five years old. Seems a lot of the research centered around the proper sequence of peptides and the length of the peptide chains. Seems to me that there must have been a lot of trial and error research on animals before there were successful outcomes in humans. At this point, it appears that they have it pretty much down pat.

    I'm still feeling the improvements but I do suffer bouts of temporary fatigue. It comes and goes and when it comes, I rest. I've been able to do a few things around the condo in between resting. Today, I did the nastiest job I ever do. I removed the plunger in my bathroom sink and cleaned out the gunk. The sink was starting to drain more slowly and that means hair and gunk are in the drain. It involves crawling under the sink and taking the thing apart and putting it back together. I have Rubbermaid pull-out drawers in the vanity and I cleaned those out too while I was under there. I love pulling them out when I'm doing my hair and makeup and having them all clean and organized.

    I'm still having to take my Guai or the tender points start to ache so the injection hasn't gotten rid of the FMS symptoms. Thankfully, the guai stops the pain. I'm just very, very grateful that the Sjogren's symptoms seem to be gone. SS is the newest condition so, perhaps, the shots work backward, clearing the newest problems first. My arthritis is newer than the CFIDS/ME and the FMS and it is still better. I never expected the improvements to last as long as a week. I'm holding out hope they will last until the 27th. This is getting exciting to me.

    Thanks again for your good wishes and interest. Sending hugs and prayers your way.

    Love, Mikie
  15. cherylsue

    cherylsue Member

    Hi Mikie,

    I came back to the board to wish you a happy holiday and check on you. You finally got your first peptide shot! Hurray for you. I hope it sends you to a better land of health. I'm sorry you had a bit of a rough time, though. My prayers are with you.

    I did return to work in August. It was extremely difficult with many days off here and there. I'm stronger physically, but drained emotionally. I changed Lyme doctors in October. He put me on stronger meds and more supplements. Unfortunately, I battle anxiety/depression in part due to the meds. I manage the fatigue, etc., but the dep/anx are my worst symptoms.

    Wishing you a healthy and happy New Year. Thanks for giving me the encouragement when I needed it the most.

  16. Mikie

    Mikie Moderator

    Thank YOU for all your support; it means the world to me. Sounds like some good news/bad news for you. I'm glad you are better physically. Sometimes the meds which help us also cause us problems. After going through the gamut of BP meds, we finally found one I could tolerate but it interfers with my sleep. Also, until I got used to them, they caused me to feel anxious and angry. Yikes!

    My dry mouth returned this morning so the effects seem to be wearing off just as the doc said they would. Still, I'm happy the injections will work and, eventually, my bod will learn to make its own peptides.

    Thanks for your sweet good wishes. You are in my prayers and I want to wish you a happy holiday season and a wonderful, healthy new year.

    Love, Mikie
  17. cherylsue

    cherylsue Member

    I remember you fondly, as do so many on this board. Thank you for your well wishes.

    My wishes for all those on the board is a HEALTHIER, HAPPIER, AND BETTER NEW YEAR!

  18. Mikie

    Mikie Moderator

    I second that good wish for a healthier new year for us all.

    BTW, today, the dry mouth is much, much better. Also, I have tons of energy and have been doing things around the condo today. Wow! I can hardly believe it. I'm resting in between doing things, though, as I don't want to push it too far. It feels as though my body is really adjusting and has fits of stops and starts. That's OK; it means the shots are going to work. I wish everyone could get them and that they would work for everyone. I'm kinda journaling my experience here so others who may be interested can see how it's working for me. Of course, we are all different but so little is known or understood about this treatment that I figure my annecdotal postings may be helpful

    Love, Mikie
  19. simonedb

    simonedb Member

    Mikie, glad to hear yr going in a good direction. I just found out have a corneal abrasion, I thought my eye was super irritated a couple weeks ago but didnt get it looked at til this week, its on the mend but not a good sign, part of the sjogrens. Had this once before in years past and it was much worse that time, I wasnt able to keep functioning with it, had to take an immediate time out in the dark for few days with eye patch etc. But this is making me want to figure out something to do for immune modulation so it doesnt get worse, already put in drops multiple times a day.

    I hope yours and everyones holidays are relaxing and give some glimmers of hope

  20. Mikie

    Mikie Moderator

    BDT, thank you so much for your good wishes and support. It means a lot to me.

    SdB, I am so very sorry about the abrasion. I knew that can happen with SS. It's a horrible disease and most people do not understand the severity of the symptoms. I never did until I got it. Actually, I had only heard the name but never knew anything about the disease. I hope you can find a treatment which works for you. The peptide injections might be an alternative.

    I've not been doing too well at night. I can't believe that my body pain is worse at night now. That's one symptom that hasn't bothered me since the Guai reversed my FMS symptoms years ago. It isn't happening during the day. My mouth was only a bit dry last night and I'm fine today. I think the first shots cause things to improve and regress in rapid succession as they try to straighten out the brain and body. In any case, I'm just rolling with the punches right now because the shots will eventually work completely.

    I'll start another thread after my injection on the 27th. Tomorrow, I have to stop all meds and supps except for acetaminophen, if I need it; guaifenesin; and my Klonopin. My BP will shoot up but BP meds will block the injections so I'll have no choice in that. Even when my BP is high, it's not "dangerously" high. If the BP causes a headache, as it did last time, I can take the Excedrin to alleviate it.

    Merry Christmas, Happy Holidays and a very Happy and Healthy New Year.

    Love, Mikie