8th Peptide Injection

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Jul 21, 2012.

  1. Mikie

    Mikie Moderator

    Had my 8th peptide injection last Mon. As many of y'all know, I've been extremely exhausted and in pain from a bad fall almost a month ago. My knee is still a bit infected from a wound I suffered in the fall. Still, I think I have enough experience to know that the injections are working. I had wondered there for a while around the 5th and 6th injections.

    Despite the fatigue and pain, I know it's not FMS pain--no tender points. The pain I have is in one hip and my lower legs where I hit them in the fall. The FMS pain has been gone a long time. My arthritis pain left the first night of the first inj. and has never returned.

    My Sjogren's symptoms have come and gone over the months but I haven't had them in some time. I still get a bit of dry mouth after taking my blood pressure meds but that is normal and not part of SS.

    My thyroid is normal and I'm off Synthroid. The doc told me that hypothyroidism is an autoimmune condition and that the injections should heal it.

    Despite a lot of allergens in the air, my allergies appear to be gone. The shots are also supposed to help with allergies.

    All in all, I believe the shots are working. The doc had warned me that, sometimes, they don't appear to be working but are. Not every one of them produces the same apparant results.

    If the shots work as anticipated, I should be stopping them in Nov. unless they taper them down instead of one per month. I need to ask about that. I just hope the fatigue improves. Over the course of the injections, I have had times of high energy so I know it's possible. My exhaustion now may be connected to the concussion/head injury I suffered in the fall. The doc thinks so. I awoke this morning feeling better than I have in ages so I hope the fatigue is a thing of the past.

    I have tried to be as accurate as possible in reporting my progress and, in some cases, seeming lack of progress. All in all, I feel the shots are working about as one would expect for someone my age who has been sick so long. I feel they have been worth doing but it won't be until I finish with them that I'll know for sure. The improvements seem to be permanent with some taking longer than others. Some of the improvements seem to come and go before they become permanent. Of course, permanent isn't something any of us can say for sure but I use it as opposed to an improvement which goes away, seemingly for good.

    I know we are all different and react to treatments differently but I believe that annecdotal reports are helpful. Almost everything which has helped me is something I first heard of here, with the exception of the peptide injections. This website has been so supportive, kind and helpful to me that I want to help others in any way I can.

    Love, Mikie
  2. Mikie

    Mikie Moderator

    I didn't think I could afford the injections but prayed and just about the exact amt. needed appeared out of the blue through an old ins. policy. My faith is so strong. This isn't the only time things have come along at just the right time.

    I honestly was doing so well several years ago with what I was doing that I would not have done this treatment save for the devastating Sjogren's which came along. Like 12 years ago, I could barely get out of bed. Of course, I had the dry eyes, dry mouth and the sores and pain in my mouth but it was the total exhaustion which did me in. Sjogren's also caused my lymph nodes and salivary glands to be extremely painful. I had to quit working at a job I enjoyed.

    I wish we had more input on this treatment too. One thing I've found out is that if one gets results in the first three injections, one will likely benefit from the treatment. It just isn't linear improvement and one has stay the course and not get discouraged.

    Twelve injections, or a year, is what is normal unless one is very young. I don't know whether I will just stop and see what happens or taper down the last few months. Some people have to continue with a few shots a year just to keep the improvements. This isn't the norm but it happens. This is like everything else. Everyone's story is a bit different. I'll just keep going and see what happens. I can't affort to continue the shots every month but don't think I'll have to, considering the results I'm getting.

    I'm not sure I would have considered the injections were it not for the success, over more than 30 yrs., in Europe and the fact that the research came from Oxford University. Now that US Big Pharma is getting into the act, and the FDA has basically approved this treatment, I believe it will become more prevalent. Of course, ins. co's. will consider it "experimental" and likely won't pay for it until it becomes clear that it will save them money. That means they will have to recognize many of our illnesses and that our illnesses can lead to even more illnesses.

    I'll keep posting about the injs. because I think it helps to have someone who has been on them quite a while. I am now 2/3 of the way through the protocol. I believe all my symptoms which were caused by my illnesses have been eliminated or are on the way to being eliminated. I will not use the word, cure, because it's such a loaded concept where our illnesses are concerned. I will say that my system seems to be correcting itself and, I believe, the corrections will last.

    Thanks for your interest and comments.

    Love, Mikie
  3. Mikie

    Mikie Moderator

    I'm glad you find things which help you and I'm impressed at your continuing efforts to find them. I don't believe in ever giving up and I don't think you do either. Best of luck and keep us updated.

    Love, Mikie
  4. mbofov

    mbofov Active Member

    Thanks for posting the update. I'm glad your improvement in some areas continues, and hope your post-concussion fatigue resolves very soon!

    Your posts on this topic are invaluable - there is so little information out there about the peptide injections (and many other things). Like you, many things which have helped me I have read about first here (with the notable exception of muscle testing by trained practitioners - I am really sorry more people do not try this - I would have been so much worse off without it!)

    Best wishes,

  5. MicheleK

    MicheleK Member

    Hi Mikie, So glad to hear you had a good day. I hope it will continue for you.

    It is interesting reading about your results with the peptide injections. I have a friend with Sjogren's who I need to mention this to. If you had not been sharing your experience, I would not have researched the subject and understood why they work. Thanks for sharing.

    Hope you will still lay a bit low to be sure you are over the worst of the injuries. Hugs, Michele
  6. Mikie

    Mikie Moderator

    Thank you both for your kind words and interest.

    Mary, I'm glad the muscle testing has helped. Could you please post on it again? My memory is kapoot right now and I'll bet your info could help a lot of people here. One of the problems is that we post about what is helping and then, it rolls over and new people don't get to see it. There is so much which has helped many of us. Had I not gotten the SS, I would have been content to just get along as I had been.

    Michele, thank you. I am taking it easy but I've hit a point where I really do need to do some cleaning around here. I'm kind of scanning the boards but not nearly as much as when I'm doing better. I think we each have a gut feeling for how much we can do on a given day. My days of overdoing it and crashing are over.

    These illnesses we have are complex and not well understood. We are vulnerable to picking up other immune and autoimmune conditions which just further complicates matters. One person's CFIDS/ME or FMS may differ greatly from anothers in origin and/or symptoms. It appears that there are subsets of CFIDS/ME, likely due to various chronic infections which many of us have and which may have triggered the illness full blown. There is also likely a genetic factor.

    Dr. St. Amand's guaifenesin treatment reversed my FMS symptoms so I came into the current treatment with only intermittent flares of FMS pain. I felt I had it controlled. The injections have made the guai unnecessary.

    It took 2 1/2 yrs. on Doxycycline to force my mycoplasma infection into latency. It took 1 1/2 yrs,. on Acyclovir to force whatever viral infection I have into latency (usual suspects are EBV, CMV or HHV-6). It also took heparin injections to get rid of excess fibrin in my blood in which the pathogens were hiding out. Finally, it took transfer factors to mop up any lingering pathogens. I use a zapper to get rid of pathogens in my blood when my infections try to rear their ugly heads and I also do a course of ABX or AV's.

    The injections are starting to normalize my immune system. I used to suffer only from the big chronic infections but never got a cold. This year, for the first time in recent history, I caught a cold. It was good news/bad news. I didn't enjoy having a cold but it signaled that my immune system was coming more into balance. I used my zapper and the cold symptoms were mild and not lengthy.

    I still take the methylation supps because I believe in them. I don't know whether I'd be doing as well without them. They are like chicken soup. They don't hurt and they are likely helping. I also still take my Klonopin, another pillar in my treatment regimen. It protects the brain and allows me to sleep. I might be able to wean off of it in the future but I doubt I will. It's been a God send.

    I consider these injections the Mother of All Treatments that I have tried. I believe they are getting at the core of my illnesses moreso than anything else I've tried. I believe they are working better because of all the things I did in the past to try to heal. That my doc is having great success with his other patients also confirms for me that I am doing the right thing.

    I keep us all in my prayers for healing and help with all the tangential problems our illnesses cause.

    Love, Mikie
  7. mbofov

    mbofov Active Member

    I will do another post about muscle testing, probably in a couple of days. Still recovering from crash, plus have doctor's appt tomorrow and so on.

    but it's a good idea to do this - thanks for the suggestion!

  8. deepak

    deepak Member

    Good to see you are back on track in feeling better on the injections. :)

    I had one question and was wondering if you knew this one - I read that they do plasma-specific peptides too. So, why does not everyone get those, instead of the try for a certain period and see if its working ??

  9. Mikie

    Mikie Moderator

    More than 90 percent of patients respond to one of the peptide sera which are available, making the plasma testing unnecessary in most cases. It is only when one does not respond to the injections that a plasma exam may offer the reason and suggest a more specfic serum. Sera can be specifically tailored, depending on what the exam reveals.

    In my case, we knew what conditions I suffer from. A wide-spectrum serum for immune and autoimmune conditions is what was indicated. Had I not responded in the first three injections, I could have had the plasma test. It wasn't necessary. In most cases, it isn't. In reality, one usually knows whether the injection is successfl with the first one.

    There are two approaches to dealing with our illnesses, depending on the patients' and docs' views. One is to approach treatments empirically, a long honored and often successful approach. One tries different things, weighing the potential risks versus the potential benefits. This eliminates costly, unnecessary tests which are often not covered by insuance. This approach has served me well.

    I've encountered people here who demand scientific proof, using studies, before they will try a treatment, even when said treatment carries little risk. Neither approach is right and neither is wrong. People are just different with different ideas. I have, however, not seen many of these people achieve healing. They are forever waiting for the cure which never comes. Or, they are so overwhelmed by all the treatment options available that they become paralyzed and do nothing.

    I've found that there is no magic bullet out there. As you can see, I've incorporated a number of treatments over the years which helped a lot. Each one was elected after performing due diligence. These injections come as close as I can see to being the magic bullet but I won't know until I finish the series of shots. If I can manage to stop injuring myself long enough to heal, that is :)

    If a patient demands the plasma exam, I'm sure the doc would accommodate him or her but unless the patient displays no symptms which indicate the illness(es), it just isn't usually necessary. All my treatments have been done empirically on the cheap without costly and unnecessary tests and I'm doing better than all the patients in my old specialist's practice. If I needed tests, I'd get them. It's just been easier to try things.

    Hope this helps.

    Love, Mikie
  10. deepak

    deepak Member

    Thanks for your detailed explanation :) And yes, I do hope you will manage to stop hurting yourself heh :)

    I am going to write to your doc and see if he is willing to send me the first injection here. Dr Dakos said I have to go to USA for the first one and subsequent can be sent.

    Do these injections also take care of any infections etc which may be causing FM like symptoms ?

  11. Forebearance

    Forebearance Member

    Thanks for the report, Mikie!

    I'm so sorry to hear about your fall. I'm so happy the peptide injections are working for you! I wish I could try them.

  12. lke1165

    lke1165 New Member

    Hi. Kinda new to the boards, but not the website. What type of peptides are you receiving- I know there are different ones . . ?? I've had 3 injections (Regenapep) - doing 2/week, for 12 weeks. No change yet. Looking to do injections myself (well, my husband), my naturpath is too far to go 2x/week and local doc charging me $150 just to inject it! Glad to hear of your sucess, and trying to be positive that it will help me. Oh, I have fibro/CFIDS for over 12 years- result of toxic mold exposure - not sure what bearing that has on peptide success. On total disability. Thank you for your input/sharing :)
  13. Mikie

    Mikie Moderator

    Deepak, you will have to ask the doc about infections. As I mentioned, I had driven mine into latency by the time I started the shots. The shots regulate the immune system so they may help with infections but I don't know for sure. I seriously doubt the doc would send the peptide serum without first examining you. He may know someone who is doing these injections in your part of the world.

    Forebearance, thank you for your kindness. I wish you could get these injections too. I wish we all could get the medical care we deserve. We are the stepchildren of the medical system. I just got lucky in finding this doc and having the money come out of the blue.
  14. Mikie

    Mikie Moderator

    My response posted by itself before I got to your post. It does that with my e-mails too. I think my computer is possessed. It needs an exorcism.

    I am getting the HS peptide. These are the ones developed at Oxford and made at a research facility. They kinda fly below the radar in this country but they have been used for more than 30 years in Europe with great success. I'm not familiar with the name, Regenapep. Is it something from a US Pharma? I know that US companies are doing studies using peptides. It would seem that if you are doing that many injections with no change, something is wrong.

    Though no one knows what causes CFIDS/ME, it is clear that a number of things, like exposure to toxins, infections, and trauma, can trigger our illnesses in suseptible people. I say suseptible because not everyone is left with CFIDS/ME after one of these triggers. Many, like me, survived one event only to be brought down by another. That more than one person in a family are often ill with immune/autoimmune illnesses, suggests a genetic component. The more we learn about our illnesses, the more questions we have.

    I've been trying to educate myself as best I can doing a lot of online research and reading articles by some of the foremost researchers and clinicians. The conclusion I have drawn is that our bodies lack the ability to respond efficiently to assaults, especially on our immune systems. Often, even after the threat has passed, our systems continue to react abnormally, making us sick.

    The Oxford group has found abnormal peptide sequences in sick people. There are different abnormal sequence chains, depending on the conditions. Injecting the correct peptide sequences trains the system to learn to produce its own correct peptide sequences over time. The older one is, and the longer one has been ill, may determine how one responds.

    BTW, the FDA has approved this form of treatment but insists on referring to the treatment as amino acid solution injections. Dr. Dakos had to take down his website until the correct jargon was substituted for the old "peptide" referrals. A rose by any other name...

    Good luck on your injections. BTW, I just looked up the product you are on. It appears to be a peptide which blocks inflammation in the body. Inflammation is often a big part of what ails us but I think it operates on a different idea than the Oxford injections. Have you asked your doc about them?

    Love, Mikie
  15. Mikie

    Mikie Moderator

    These injections are not the same thing. My doc says he's barely breaking even charging the $300 per injection. I don't know what the cost to the docs is for the inflammation peptide but it's obviously covered by insurance or it's less expensive than the peptide sequence injection. Peptides are used in supplements and cosmetics. How they are used can really differ.

    Love, Mikie
  16. lke1165

    lke1165 New Member

    Thanks for your thoughtful response. I believe I have a genetic predisposition for Fibro/CFIDS, but I'm sure the toxic mold, then the resulting emotional trauma of being sick and losing my beloved career, not to mention my health.

    Regenapep was originally developed in the UK, my doc gets it from Thailand, I think. I did not know that it is FDA approved under another name, interesting. Yes, the inappropriate inflammation response is what my doctor says makes us feel sick. I'll look up your particular peptide so that I can speak to my doctor about what, exactly, the difference is. I've only just started, so I guess more time is necessary to determine whether it's working.

    P.S. Sorry about your demonic computer - can relate!

  17. lke1165

    lke1165 New Member

    The $150 charge from my "local" doctor is just what they charge to inject the peptide, that I had already purchased from my naturpath doctor for $1,600. My naturpath doctor wouldn't charge for the injection, but it's too far to drive twice a week.

    I get the cost vs. guarantee decision, definitely. I'll try to keep updating my status. I should receive my syringes and lidacain today, so that I can still try to fit in two injections this week, compliments of my hubby -lol!
  18. lke1165

    lke1165 New Member

    Hi, I tried to look up HS peptide, but didn't get anything specifically called that. Could you give me a web address, please?

  19. Mikie

    Mikie Moderator

    What you are taking may be the same idea but just a different peptide or just a different brand name. I don't know what the HS stands for. There is also an HN. These may be just the names given to the sera by Oxford. They us a research lab which makes the sera for them. I had a horrible time researching any of this because docs using it here have not wanted interference from the FDA. They are relaxing a bit now that the FDA has approved the "amino solution" injections. I suspect that the FDA is trying to pave the way for Big Pharma to develop their own sera and make money from it. The ones from Oxford have not been commercialized. I had to sign a contract that I would not try in any way to figure out what was in the shots or how they are produced.

    The info I read on the one you are taking made it sound as though it is a single peptide which blocks receptors to eliminate inflammation as opposed to peptide sequences which replace defective sequences in the body of ill people. Different sequences were developed for different conditions. Also, the broad spectrum sera was developed for immune and autoimmune illnesses. This is the HS serum I get. It's possible that the one you take is also a peptide sequence but the co. doesn't mention that in the material they have online.

    This is such a low-profile treatment that it is next to impossible to find out much about it. I understand the need to protect proprietary research and development information/intellectual property but it makes it hard to research. I'm used to doing a lot of research on my treatments. I did attend a seminar where they did explain and show the basics of how the treatment works but nothing too indepth about the peptide sequences. I took a leap of faith because I'm impressed that it was developed at Oxford, has been used in Europe for more than 30 years and has more than a 90 percent success rate. Also there is virtually no risk or side effects.

    The only thing which puzzles me is why you haven't responded by now. With the injections I'm taking, there is usually an immediate response or, at least, one by the 3rd injection. You might ask you doc about this and whether your injections are the same as what I'm taking.

    Best of luck to you.

    Love, Mikie
  20. lke1165

    lke1165 New Member

    I will definitely ask my doc about a singular vs. sequence type peptide. Yes, I've read reports of immediate responses, so, I'm disappointed. My doc is on vacation, I'll touch base with him in a week or so. By then, I'll have had 8 injections.

    That's interesting that you were required to sign documents concerning the peptides. I was not required to sign anything. My doc is new to the peptide injections, unfortunately. I feel a bit like a lab rat. I would sure hate to have paid so much for this treatment and ultimately find I should have been treated with a different type of peptide(s) Uugghh! Such is life thus far in all the treatments I've tried over the past 12 years and after spending thousands and thousands of dollars!! Mostly, in my experience, most treatments work, then stop. It's as though my body is adapting to remain ill - lol!

    I spoke to my doctor's "partner" this morning about some recent blood test results. I've never spoken to him, but since he was charging me for a phone consult, I guess he felt he should discuss other treatments. He offered a free opportunity to use an electromagnetic mat. Have you come across this in your extensive research?

    Thanks again!