Peptide Injections--Part II

Discussion in 'Fibromyalgia Main Forum' started by Mikie, May 25, 2011.

  1. Mikie

    Mikie Moderator

    I saw my doc today and will start the peptide injections as soon as his supply arrives. He's been out of the country and the scheduled delivery is off. The serum should arrive in a week or two. He said if it isn't here in a week, he'll see whether he can borrow some from Dr. Dakos. He will be calling me. I'm sooooo excited.

    My crp result was a 6+, indicating a high level of inflammation, consistent with the diagnosis of the Sjogren's. There is no test for Sjogrens, but with the combination of my symptoms, and now the test result, there is little doubt that I have it. He couldn't understand why old Nurse Ratchet never did a crp, considering my symptoms. I'm just glad I found him and kicked her to the curb.

    I'll keep everyone updated as soon as I have something to report.

    Kelly, he did tell me that treating RA with the injections is more difficult than with other conditions. About 20 percent of those with RA do not respond at all to the injections and they don't know why. So, I would think that any improvement you have gotten is a good sign. It may just take a little longer. I sure hope you start having the improvement last longer. As always, I'll keep you in my prayers. Please let me know how it's going.

    Also, he wasn't that concerned about MSG as long as one doesn't get a lot of it, especially around the time of the injection. He was concerned about artificial sweeteners. I'm off the Diet Coke and don't use them in cooking. He seemed surprised that I am cooking everything from scratch to try to give the injections the best chance of working. I actually feel better just from cleaning up my diet, so it's worth it.

    Love, Mikie
  2. mbofov

    mbofov Active Member

    When I read the other day that you had stopped drinking diet coke in preparation for your peptide injections, it raised a red flag for me. I just googled Sjogren's and aspartame, and there are several hits connecting the two. Aspartame can cause the dry eyes and other symptoms associated with Sjogren's. Here's a couple of links: (could not find the article, but just the title indicates a link)

    So it's possible that your Sjogren's symptoms may resolve or at least improve now that you've stopped drinking aspartame - wouldn't it be great if it were that simple? ;)

    I look forward to following your journey with the peptides -


  3. Mikie

    Mikie Moderator

    Thank you soooo very much for the info and your kind good wishes.

    Even without the Sjogren's, I think I would have given up the Aspertame after reading "Excitotoxins: The Taste That Kills." What toxins, like MSG and Aspertame, do to the neurons in our brains is truly frightening.

    Thanks again. As soon as I have something to report, I'll post here.

    Love, Mikie
  4. Mikie

    Mikie Moderator

    Peptides are the building blocks the body uses to produce amino acids/proteins. The premise is that if the body has the wrong sequence of peptides, it cannot produce the proteins needed and will be diseased. There are different peptide sequences, depending on the illness, in the injections. The peptides are manipulated and synthesized in a lab to produce the sera. The theory is that if the proper peptides are introduced into the body, it will eventually learn to assemble them in the proper sequence on its own.

    The younger a person is, the more plastic he or she is and the fewer injections are needed. In the case of teenagers, just one injection has been known to work. I know my explanation is simplistic but this stuff is complicated, from a biochemical perspective, and I just don't understand enough, beyond the simplistic explanation given to laypersons, to explain it any better.

    I will have two initial injections, two weeks apart. Then, I will get the third a month later. If I get a beneift, I will receive approx. five more injections, once a month. The last few will be about six weeks apart. If, after the first three injections, I get no benefit, they will be discontinued. Each person is different so there can be some differences in the schedule of injections. For people my age, who have been sick as long as I, the ten injections usually do the trick but it may take more in some cases. There have been some cases where people have to take them indefinitely to continue to receive the benefits.

    There have been no serious side effects and where there have been, it is usually some mild inflammation at the injection site or a temporary feeling of burning in the body. More than ninety percent of patients have benefits, from mild benefits to what amounts to a cure. The exception is the injection for RA. Twenty percent of patients receive no benefit. Kelly here is taking them for RA and, although she has received some benefit, it has not lasted long. I believe she has had five injections to date. The good news is that she does get a benefit but it may take longer.

    These injections have been used in Europe for longer than 30 years but they are not FDA approved here. Insurance does not cover them. Each injection currently costs $300 at my doc's. Medicare does pay for the office visit, so I only have to pay $15 co-pay for each visit.

    This stuff is old hat at Oxford University in England and they are researching and doing studies to see whether they can find peptides for conditions such as ALS, Parkinson's and Autism. It is very exciting and, I hope, leads to cures for our worst illnesses. My doc travels to Europe to partake in seminars on the state of the progress in treating these illnesses with peptides.

    I was doing well enough with just the CFIDS/ME to work part time after years of all kinds of treatments which all worked together well enough to get me beyond being bedridden most of the time and on Morphine for pain. It wasn't until the symptoms of Sjogren's Syndrome hit me that I hit rock bottom and had to resign. The dry eyes and dry mouth are bad enough but the bone-crushing exhaustion now keeps me from having much of a life. It is because of this that I'm willing to give the injections a try. Also, CFIDS/ME and FMS are not considered autoimmune but Sjogren's is. With autoimmune disease, the autoantibodies can attack the body with some serious results.

    Well, I've certainly been long winded here but I think there may be more and more interest in this treatment option, especially if my results are good. This is an opportunity for annecdotal evidence from the start. Because of that, I wanted to lay the groundwork as best I can, with my limited understanding of the science involved. Unfortunately, there is a dearth of info on the web about this. Most of what is out there is very old info on animal studies and I'm not even sure it's the same treatment.

    Hope this helps a little.

    Love, Mikie
  5. Mikie

    Mikie Moderator

    It's not a matter of being low on peptides; it's a matter of having peptides in the correct sequence. Evidently, peptides are strung together in certain sequences for certain requirements in the body. The body cannot work if it cannot make poteins. This may or may not be completely correct but it's how I understand it. Our cells are covered with receptors and only the correct sequencess will fit into these receptors, like the right key into a lock.

    I know this sounds simplistic because I'm no biologist and have to just piece together what can from the doc's explanation and what little info I got at the seminar. They don't present a lot of info because it is too complex for the average person to understand. I have seen it in chemical schematics but it's like trying to read Greek for me. I just have to trust that, based on more than 30 years of success in Europe, it is a potentially viable treatment for what ails me.

    I'll let y'all know.

    Love, Mikie
  6. jkpta

    jkpta New Member

    Sorry I've been away for awhile. I've read these posts and I'm really excited for you to get started on the injections. I have just received my 6th injection in the mail. I am due to get the shot on the 8th of June. I am not feeling any better. After the initial relief of the 5th injection, all my pain came back along with new joints afflicted. I am so discouraged. I'm now afraid for the first time in 15 years that I will have to give in and see a rheumatologist for the ever dreadful RA drugs. I cannot let my body deteriorate further. I'll let you know.

  7. Mikie

    Mikie Moderator

    I had such high hopes that this would be the answer for you. I will keep praying that the next injection works. If you get relief for a longer period of time, perhaps it would be good to stay on the injections for, at least, a few more months. It's all a matter of the body's ability to integrate the peptide sequences on its own. Some of our systems just take longer to be able to do it on our own. At least, that is how it was described to me.

    Whatever Herpes-Family virus I have has decided to reactivate. I'm still waiting for the doc to call. I think I had better call him to let him know as I'll be on the Acyclovir for another 10 days. Of course, this has spawned another Sjogren's flare and my mouth is full of sores and my salivary glands are hurting. All I want is to be able to try the injections but until my bod decides to sooperate, I won't be able to do it. Sorry to whine about my situation when you are so frustrated with the treatment. Hang in there and, hopefully, things will improve.

    Love, Mikie
  8. jkpta

    jkpta New Member

    Don't ever worry about whining! We have to whine just to cope! Your situation sounds horrible. When you treat one thing and another flares up it makes you feel so hopeless. Is Acyclovir a drug that you have to avoid with the peptides?

    Also, I've been meaning to fill you in on my friend who also is doing the peptides thru Dr. Dakos. I think I mentioned previously that she has Lupus, Hashimoto's Thyroiditis and Sjogren's. (actually she has RA symptoms as well) They give her a blanket peptide for all her diseases. She has had 6 injections to date. Her improvements have been, more energy, less napping throughout the day and her eyes are not as dry. She has drastically reduced the amount of eye drops she uses in a 24 hr. period. She still has flares but she says overall she is feeling much better. She is 50 yrs. young. I hope this gives you inspiration!

    She does not want me to stop the injections because like you said, I have had some relief and that must mean something. My main concern is that the new damage I'm experiencing is irreversible and if these peptides don't help me soon, my time is running out. Since my foot and ankle have been progressing so rapidly, I feel really scared. Now I'm whining!

    Let me know what the Doc tells you.

    Love, Kelly

  9. Mikie

    Mikie Moderator

    Thanks for the update on your friend. I'm happy for her. Conversely, I'm so concerned that you are racing the progression with your RA. Like most of our illnesses, RA can be so unpredictible. My friend's daughter had no inkling she was even ill until, one day, she could not lift her arms to brush her hair--intense RA pain. She also now has FMS. She is on steroids and doing pretty well but no one knows what is around the corner with our illnesses. It never occured to me that I would get Sjogren's. I knew that infections, like the mycoplasma which triggered my illnesses, could turn into something autoimmune but it's been so long since I was infected by the mycoplasmas. Oy!

    I am praying that this next injection will work and stop the damage to you from the RA. I guess that sometimes, all we can do is pray when we've done everything else.

    I did call the doc's office to tell the woman there that the Herpes Virus had reactivated. I guess they have some other patients with chronic Herpes Viruses which reactivate. She was so compassionate and kind. From her usual demeanor, you would never guess it. One patient has a Herpes infection of the eye socket. Yikes!

    Take care, my friend. I'm pulling for you.

    Love, Mikie
  10. cherylsue

    cherylsue Member

    How are you doing with the peptide injections? I just checked in after a month or so, and I was wondering how you are doing? Have you found any relief? I've had you in my thoughts.

    My mycoplasma pneu. infection isn't holding me back so much anymore. My Lyme disease reactivated, so I'm on both ceftin and azithromycin to control both infections. When I wrote to you last I was pretty miserable. I went back to work the last few weeks of school 1/2 days every other day and hubby drove me back and forth.

    Now, I am driving myself around town and taking after my very sick mother. I'm much better than I was, but still not perfect. I'm dealing with depression issues. I think this is from the medicine and the fact my mother is slipping away.

    Just wanted to give you some hugs, too, and thank you for your encouragement during a very difficult time for the both of us.

  11. Mikie

    Mikie Moderator

    So good to hear from you. I'm glad you are better but so sorry for all you've gone through and sorry about your Mother too. July 11 will be nine years since I lost my Mom and I miss her every day. She was pretty healthy right up to the end so, for the most part, I was spared the heartache of watching her decline. My heart and prayers go out to you. Yes, the meds can cause depression but dealing with your illness and taking care of your Mom can also contribute.

    I still am running a low-grade temp and am back on the Acyclovir. Yesterday was a big Herx day so it must be working. I had stopped it for a while as my mycoplasma infection seemed to have started to reactivate and I did another course of Doxycycline. It got better but the virus made a curtain call so now, I'm back dealing with it. Until my temp stays normal for at least a week, I can't do the injections. I've had so many expenses lately that I don't think I could do it now anyway. It's on the back burner until my bank acct., and my body, recover.

    Thank you so much for your support. I'm sending love, hugs and prayers your way.

    Love, Mikie
  12. md3132

    md3132 New Member

    My dad has had the injections and was doing wonderful. We are not sure what he had but the doctors said it was his muscles. It was like a miracle.....he has full use o his hands and fingers, full range of motion in his arms and shoulders and free of pain for the first time is a very long time. Now our dilema is that the injections have not arrived so he can continue the course of treatment. It may be 2 more weeks before he receives the meds. He is beginning to feel the effects reversing and is felling pain again. He treatment was more aggressive that the one you described in an earlier post.

    Did you have the injections? Did they work? Did you have a had time getting the injections?

    Looking forward to talking to you...
  13. Mikie

    Mikie Moderator

    I am so glad to hear the positive results of your dad's injections but distressed to hear that he's having problems getting the serum. I know that my doc's supply was delayed about two weeks after he returned from Prague. He had suspended receiving the sera and his partner was doing the injections in his absence. I think they have patients who receive their serum and do self-injections.

    Unfortunately, my old chronic Herpes-Family Virus, of unknown strain, reactivated and I've had a heck of a time getting it back into remission. As long as I'm running a low-grade temp and having symptoms, the injections will not work. Soooo, I wait. In the meantime, I've had car and air conditioning repairs which kinda break the bank for a while. As it works out, I may not be able to afford the injections right now anyway. Wish I had something to report but until I can start, there's nothing I can add.

    I hope and pray your dad gets his serum. Does he have a doc who arranged for him to receive it? If so, I would call him or her to see what can be done to speed things up. It's my guess that the lab is having difficulty keeping up as word spreads about this treatment.

    Love, Mikie
  14. cherylsue

    cherylsue Member

    Since I can't seem to tolerate Famvir or acyl..., my LLMD encourage me to work up the dosage of Lauricidin. I was up to two scoops a day until I ran out in March. It took another month before I went back on it, but by then the myco pneu. activated.

    Anyway, when my doc ran extensive labs, my EBV and HHV6 went down. In fact, my EBV was down to zero. Lauricidin is very powerful, and it must be built up gradually. There have been numerous clinical studies, and it is used in some major hospitals in the Chicagoland area. It works on viruses, and I have heard many others sing its praises on message boards. Both of my LLMD's encouraged me to take it regularly for immune support.

    However, it does not work on rhinoviruses. Only olive leaf seems to work partly on colds. Lauricidin does work on flu viruses, and it certainly helped me get through the school year without getting the numerous viruses my colleagues suffered. However, it did not protect me from myco pneu. although it's supposed to help.

    Check out You can take it with abx and meds, too. I found it really, really helpful.

    I hope you can get those peptide injections soon. I'll be checking in to see how you are doing.

  15. Mikie

    Mikie Moderator

    Thank you so very much. I'll check it out. I'm better but still running a low temp. I remember how slow the Acyclovir was to drive the little critters back into latency. I need to pulse off of it to get the virus to act up again and hit it again with something. I really appreciate this info. Hope you are doing well.

    Love, Mikie