Peptide Injections Anyone?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Mikie, Feb 12, 2011.

  1. Mikie

    Mikie Moderator

    I just attended a seminar on using peptide injections to treat a myriad of illnesses and conditions, including FMS, CFIDS, and autoimmune illnesses. This came out of research from Oxford University in England and has been in use for 35 years in Europe. Medicare, or any other insurance, does not cover the cost of the injections which are $300 per. They usually do 10 injections, one every 4 weeks. This may be all it takes permanently. Some people have done well on fewer.

    I have been wanting to change my PCP and will be seeing whether I can choose one of the two docs who do this for my PCP. He's on my plan. I've been gradually improving so don't know that I will jump into this but I'm certainly considering it. There are no side effects and 95 percent of people who have taken this treatment have had good results.

    Peptides are amino acids and they are manipulated into different formulae in the lab, depending on what is needed to treat various conditions. If a person is sick and no one can figure out what he or she has, blood serum is sent to England and a peptide treatment is tailor made for that patient. Otherwise, they use a formula which is known to treat whatever condition one may have.

    I was hoping someone here might have tried this or heard about it. Obviously, I'll be performing my due diligence and delving into research online. Thanks for any info.

    Love, Mikie
  2. heapsreal

    heapsreal New Member

    I have seen bodybuilders talking about this on other forums, one is called ghr6 and is used to stimulate growth hormone, apparently they are legal and are alot cheaper then you have mentioned. http://clinicalgradepeptides.com/store/index.php they do subcut injections daily, so maybe its something abit different, but it sounds interesting and alot cheaper then growth hormone.

    So im interested to find out more too.

    cheers!!!
  3. joanierav

    joanierav Member

    im just guessing here, but isnt peptides ie: amino acids, the same as the kutapressin injections that many doctors were using yrs ago for cfs? but i think they were prescribed daily. joanie
  4. annette43

    annette43 New Member

    Mike what test are done before the shots and during shots too see if they are working?
    [This Message was Edited on 04/27/2013]
  5. annette43

    annette43 New Member

    Mike what test are done before the shots and during shots too see if they are working?
    [This Message was Edited on 04/27/2013]
  6. Mikie

    Mikie Moderator

    I'm sorry but I don't know. I'm sure if you contact Dr. Dakos' office, you can get the info. He's a very nice man. Good luck.

    Love, Mikie
  7. Mikie

    Mikie Moderator

    I'm sorry but I don't know. I'm sure if you contact Dr. Dakos' office, you can get the info. He's a very nice man. Good luck.

    Love, Mikie
  8. annette43

    annette43 New Member

    Before your shots were there any bloods ran on you? Do they send a sample of your blood to England?
  9. annette43

    annette43 New Member

    Before your shots were there any bloods ran on you? Do they send a sample of your blood to England?
  10. Mikie

    Mikie Moderator

    The usual ANA done and it was neg. It often is even when people have autoimmune illnesses. My CRP was sky high, though, showing a ton of inflammation.

    Because the injections pose no risk, one can try them but it helps the doc know which one to use, depending on symptoms. It is almost always immediately apparent when the shots work; however, it takes a series of the injections in order to retrain the brain to produce proteins which do their jobs in the body. So, a person may get almost immediate relief but it won't last in most cases until the series is complete, usually one shot a month for a year.

    My first injection immediately worked and that night, my arthritis pain was gone for good. My mouth watered and so did my eyes. I felt great. As time went on, everything remained good except for fatigue. I just found out that I cannot tolerate wheat. As soon as I eliminated it from my diet, I lost the fatigue and fog. So, I am now feeling like a "normal" person. The shot were a total success.

    Because one can tell almost right away if the injections are working, it is easy to figure out if one should continue. My doc charges $300 a shot. If I had had to commit to $3,600 up front, I wouldn't have done it but because I knew the shots would work, it was easier to spend the $300 a month for a year.

    Love, Mikie
  11. Mikie

    Mikie Moderator

    The usual ANA done and it was neg. It often is even when people have autoimmune illnesses. My CRP was sky high, though, showing a ton of inflammation.

    Because the injections pose no risk, one can try them but it helps the doc know which one to use, depending on symptoms. It is almost always immediately apparent when the shots work; however, it takes a series of the injections in order to retrain the brain to produce proteins which do their jobs in the body. So, a person may get almost immediate relief but it won't last in most cases until the series is complete, usually one shot a month for a year.

    My first injection immediately worked and that night, my arthritis pain was gone for good. My mouth watered and so did my eyes. I felt great. As time went on, everything remained good except for fatigue. I just found out that I cannot tolerate wheat. As soon as I eliminated it from my diet, I lost the fatigue and fog. So, I am now feeling like a "normal" person. The shot were a total success.

    Because one can tell almost right away if the injections are working, it is easy to figure out if one should continue. My doc charges $300 a shot. If I had had to commit to $3,600 up front, I wouldn't have done it but because I knew the shots would work, it was easier to spend the $300 a month for a year.

    Love, Mikie
  12. cc15800

    cc15800 Member

    I am starting my injections with Dr Dakos this Saturday. Dr Dakos and Dr Gomeringer conferred and both agree I should stay off any meds and supplements for 3 days before and 3 days after the shot. I'm on natural thyroid, adrenal supps, med for elevated pulse and just plain old supplements. So, I don't see an issue with staying off meds.

    I've been sick for over 15 years. I treated Lyme and co-infections for 3.5 years and still have 4 issues that have not resolved. Fatigue, very tight muscles more like a fibro, brain fog and difficulty following asleep.

    I hope this works for me, I'm 67 years old and need to find answer before I'm too old to enjoy better health. I'm excited about this treatment, it gives me hope.
  13. Mikie

    Mikie Moderator

    It's possible that this has been done before because, as I mentioned, it's been around 35 years in Europe. Research continues and there are many formulae depending on what a person is trying to cure or treat. Yes, peptides are amino acids. In the lab, they manipulate which amino acids are to be combined to produce the molecules of amino acid proteins.

    The injections used by body builders might help but there are peptide injections tailored to various illnesses and that is what makes them more expensive. There is one formula which is suited to a wide variety of conditions of aging. There is one just for RA. I think, like antibiotics, some are more wide spectrum than others which are more specific.

    The computers at my ins. co. are down so I've not been able to get through to see whether the family practice doc is taking new patients. If so, I'll see him as my PCP and find out what he recommends for my FMS, CFIDS, and possibly Sjorgen's.

    I'll post more when I find more info. In the meantime, I was hoping someone might have tried this treatment. Of course, if treatment was quite a while ago, there may be more specific formulae available now. At Oxford, they are doing research into formulae for Parkinson's, Autism and Alzheimer's--more of the neurological types of illnesses. I do believe our illnesses involve the CNS and, therefore, are neurological in nature but they affect the immune system and/or are auto-immune. Peptide treatments seem to be well suited for illnesses involving the immune system.

    Dr. Cheney had an excellent article on the immune system in PWC in our library here. It explains why we may never get a cold but are suseptible to chronic stealth infections. Half of our immune system over reacts to infections and half doesn't work at all. When an immune system over reacts, auto-immunity is a danger. That may be why these illnesses travel together.

    BTW, the doc mentioned that people with RA have a 60 percent greater risk of heart attacks but that treatment with the peptides for RA cut that risk. One of the problems we have always faced with our illnesses is that the symptoms overlap and, often, we have multiple conditions.

    As I mentioned, I don't know whether I'll opt for these injections or not but I'm certainly going to try to switch to the family doc and get away from the practice I'm currently in.

    Love, Mikie
  14. victoria

    victoria New Member

    here's a bump. Let us know what you find out... hoping some others might know about this as well.

  15. Mikie

    Mikie Moderator

    I was able to change docs but it won't take effect until April because I have a colonoscopy scheduled in March. You can't change docs if you have a procedure in the works. I'm anxious to have my first appt. with him and discuss my conditions and the peptide therapy. I have some expenses coming up so even if I decide to do the injections, it won't be for a while. Also, whatever flare, which resembled Sjogren's, has backed off dramatically. About the only symptom left from that is fatigue. My FMS pain symptoms are still in remission since that flare (knocking on wood). Of course, since the Guai treatment, my FMS pain has been under control but it is even better now.

    I see the eye doc in another week. My eyes are a little dry but not severely so. I've been wearing my contacts all day with no problems. The dry mouth is vastly improved. When the flare first hit, I almost choked to death a couple of times on bread.

    Aren't our illnesses strange? We can never really count on anything but, as I've learned, we can get better, if we find just the right treatments, and sometimes, our conditions seem to spontaneously go into remission. I know this isn't true for everyone and some of us continue to go downhill. I pray for us all because I know not everyone has been as lucky as I have and because these illnesses cause so much suffering. Our suffering isn't just physical either; we can suffer financially and our relationships suffer as well.

    If these peptide injections do hold the answer, it would be a long-awated miracle.

    I hope you are doing well. Take care.

    Love, Mikie

  16. mbofov

    mbofov Active Member

    This sounds really interesting - I've never heard of it before but hope you keep us posted if you give it a try.

    I did a little on-line research and found this article which showed researchers preventing the progression of Parkinson's in lab mice with peptide injections:
    http://www.medicalnewstoday.com/articles/88811.php

    I'm also really glad to hear that your Sjogren's symptoms are much less!

    Take care,.

    Mary
  17. Waynesrhythm

    Waynesrhythm Member

    Hi Mikie,

    I only stop by here once in a while; was good to see your post. As always, I see you’re still doing your careful, thoughtful analysis of things that may help you and sharing it with us as you go along. :) I always appreciated that about your posts; they usually provide good information presented in a gentle and methodical way (which is the way I prefer).

    Regarding peptide injections: I’m intrigued with them. I’ve felt for years I was protein or amino acid deficient because of my weak digestion. I always sought out what I thought was easily digestible protein, but still for years felt I was “protein starved”. Last year, I was introduced to raw goat milk kefir, and since making it a staple in my diet, feel my body is now able to utilize protein much better. I think this experience may well fit in with you current focus on peptide injections. I wrote about some of my kefir experiences fairly extensively at this link:

    http://forums.aboutmecfs.org/showthread.php?8140-KEFIR-Depending-On-Our-Hunches&highlight=kefir

    I interpreted some of your comments you’ve made on this thread as learning ways to “control our symptoms”. Just wanted to mention this is the way I view this illness. I know some people hope XMRV or some other factor will be found to be the cause of all that ails us, and that a retroviral drug will bring us back to health.

    That would be nice, but it seems ME/CFS is usually caused by a number of significant factors that eventually tip us over the edge. My guess is most of us have anywhere from 6-12 that contributed significantly to our descent into chronic illness. So I try to work on my own unique factors and if something does come along (such as a drug) that does materially help most of us, I feel I’ll be able to better take advantage of it.

    Regarding your reference to getting a colonoscopy soon: Because of some of the stories I’ve read about how they were too stressful for some PWCs, I personally have decided not to do any, especially since I can relapse all too easily. I did however read recently that they may actually become obsolete within the next couple years because of new technology coming out. I don’t recall what this technology is, but thought I’d pass along that bit of information to you.

    Did I read recently that you’ve quit doing the part-time work you had managed to do for a while? If so, I hope it was “voluntary”, as opposed to being forced to stop. Hope you’re doing very well; I’ll keep an eye out for more of your posts.

    Best Regards Always, Wayne[This Message was Edited on 02/16/2011]
  18. Mikie

    Mikie Moderator

    Mary, thanks for the link. I'll check it out. I've been reading quite a bit on this treatment but I'm at the point where most of the info is redundant.

    Glen, last time I tried to get on PR, I couldn't log in. I e-mailed them and they said to try it again, but it still didn't work. I just gave up. I should pursue it again. This is a relatively new treatment in the US but has been utilized in Europe for 35 years with no side effects and a high rate of success. I couldn't find anything online from anyone who reacted badly to the injections.

    Wayne, thank you so much for your kind words. It's good go hear from you. I've always enjoyed your posts and the way you relate to others too. My biological father died from colon cancer and I've had a couple of pre-cancerous polyps removed, so it necessary for me to have the colonoscopies. They do have "virtual colonoscopies" which use scans instead of the invasive scope. Most insurance won't pay for them. Also, if they see polyps, they end up having to do an invasive procedure to remove the polyps anyway. Might just as well get it done and over with. They really don't bother me except for the purging prep the day before. AACK!

    Yes, I did end up having to quit my job in July due to horrible fatigue. Then, I got hit with Sjogren's Syndrome symptoms but they are letting up, so we don't know quite what it is. I suspect it is Sjogren's which is in a remission for the time being and, I hope, for good. For the most part, I'm enjoying retirement.

    I'm so glad the Kefir is helping you. Proteins are the building blocks our bodies use for just about everything. Right now, there are about 80 formulae for different conditions. Seems that with most conditions, there are common missing amino acids. These are corrected with the peptides/amino acids in the injections. They will replace the faulty amino acids in the body and the body will then continue to make its own correct amino acids. That's probably not strictly correct but it's what I remember from the presentation. Blood serum can be analyzed and a formula developed for someone who may not fall into the current 80 types of injections.

    Injections to treat run-of-the-mill conditions, like RA, are old hat in Europe. They are excited about research and development for neurological conditions, like Alzheimers, Parkinson's and Autism. The older doc, not the one I'll be seeing, is excited because he used this treatment to completely erradicate an aggressive bladder cancer and is now cancer free. He decided to dedicate his time now to research while the younger doc sees patients. Because the young one is in family practice, I will have him for my PCP effective April 1. Again, I don't know that I'll do the injections but it will be wonderful to have a doc who specializes in immune and auto-immune illnesses.

    Thank you all for your interest. As always, my thoughts and prayers are with you.

    Love, Mikie
  19. Toga

    Toga Member

    This sounds so interesting and wonderful. Like Wayne, I always enjoy your posts and the logical way you explain the things you learn.

    If this works, it could be the answer to so many symtoms. I am anxiously awaiting for April the first so we can hear about your first appointment with the new Primary.

    Toga
  20. Bunchy

    Bunchy New Member

    I'm in the UK (sigh) and have never heard of this - can you post a link to where you found out about these injections if possible?

    Bunchy x
  21. heapsreal

    heapsreal New Member

    I have a friend who is looking into growth hormone type peptides, he mention sermorelin which can be sub lingual and injectable http://www.peptidesupply.com/sermorelin-2mg/6mg-sermorelin-package thats just one link . So when i hear back from him on this i will keep you posted. Im going to talk to my doc about Gh type things when i see him next. I also came across a substance called GABOB aminohydroxybutric acid which is related to ghb/xyrem and is classed as a supplement and improves sleep and gh release, might be worth a look.

    cheers!!!
  22. Mikie

    Mikie Moderator

    For your interest. I heard about this at a seminar these local docs put on where they explained the protocol. One of them is a fellow at Oxford in England. My eye doc knows these docs and has very high esteem fo them. There is some info online about this protocol but it isn't the same as other peptide treatments.

    I do find it paradoxical that CFIDS (ME) isn't recognized in the UK and yet, this treatment seems to be old hat over there. It isn't only our illnesses for which this protocol is used; it appears to be very useful in treating cancer and other illnesses. I wonder whether it is covered under UK healthcare or whether only private pay patients have access to it, as is the case here. I don't know that much about one-payer socialized healthcare systems.

    Evidently, this has been so successful that researchers in Europe are doing research, using it to treat Parkinson's, Autism, Alzheimer's and other SNS conditions. I believe the CNS, as wel as the immune system, is involved in our illnesses.

    My eyes seem to be doing better but the dry mouth is driving me nuts. I take enzymes with my food, and I use Biotene mouthwash, but the lack of enzymes causes constant and severe diarrhea. AACK!!!

    The more I think about it, the more I think I'll try the injections. My first appt. is April 4 and I'll let y'all know what happens.

    Love to everyone,

    Mikie

  23. quanked

    quanked New Member

    If someone can use any of this to take this info somewhere--perhaps discover the name of the treatment or a name of a treatment provider--I am at a loss--would not know what to ask my doc for at this point.

    (((((((((((((

    This research is old but it sounded like what Mikie was talking about and the study took place in my neck of the woods.


    http://www.ohsu.edu/nod/documents/2007/04-04/Vandenbark%20et%20al%20(2001).pdf

    TCR Peptide Therapy in Human Autoimmune Diseases*Neurochemical Research, Vol. 26, No. 6, 2001, pp. 713–730
    ___________________________________

    This company is in the UK and and mixes up the stuff


    http://www.peptidesynthetics.co.uk/

    ****************

    This is a book on the subject on Amazon's UK site

    Amino Acid and Peptide Synthesis (Oxford Chemistry Primers) [Paperback] John Jones


    http://www.amazon.co.uk/Peptide-Synthesis-Oxford-Chemistry-Primers/dp/0199257388
  24. Mikie

    Mikie Moderator

    Under Spacee's post of CFS and Lyme Are Real.

    Love, Mikie
  25. wrthster

    wrthster New Member

    Hey Mikie,

    Thanks for the great info. About a month ago, I found two doctors near me whom I think are doing this. I kind of blew it off because it was not covered by insurance. The doctors are covered, but the injections are not. I have already spent a fortune and nothing has worked including stem cells in Panama. If you have any other links now I would like to look into this further? Also, is there a way I can confirm these two doctors are offering the same treatment? There names are Dr. Coy and Dr. Kraucak in Florida? Any help is greatly appreciated. I just do not feel like spending anymore money unless there are some real studies or first hand accounts. I read one link on here, but the studies were done on MS, arthritis, and psoriasis.
  26. Mikie

    Mikie Moderator

    I know of no way to know whether these docs are doing the same thing. You can e-mail Dr. Dakos and ask about any other docs near you. Drs. Dakos and Gomeringer are in Fort Myers, FL. This is still too new to me to know about any links. Really, I'm going to see Dr. Gomeringer on April 4 and find out more about this treatment option. I did find some things online but they were mostly on companies which do the labwork for the treatment. I wish I could be of more help but I don't know much more than anyone else. That's why I posted, asking whether anyone else had done this.

    Love, Mikie
  27. heapsreal

    heapsreal New Member

    After reading your first link it seems that its helping to strengthen the immune response and dampen down inflammation at the same time. A product i have started using and worked very well for 4 months then took about 6 weeks off as is done when using immune modulators. I have felt ill since i have stopped and was feeling much better on cycloferon. cycloferon is an interferon inducer and stimulautes alpha and beta interferon, gama interferon isnt and is the one that causes inflammation, these others are anti-inflammatory in nature. Heres a cut and paste job.

    Pharmacodynamics. Cycloferon is a low-molecular-weight inducer of interferon, which defines
    a wide range of its biological activities (antiviral, immunomodulating, anti-inflammatory,
    antiproliferative, antineoplastic etc.) The medicine induces high titers of ?- and ?-interferon in
    organs and tissues, containing lymphoid elements (mucous of small intestine, spleen, liver, and
    lungs), and crosses the blood-brain barrier. Cycloferon is very competent at curing diseases
    caused by viruses of tick-borne encephalitis, influenza, hepatitis, herpes, cytomegalovirus,
    human immunodeficiency virus (HIV), and various enteroviruses. It amplifies the antibacterial
    action of antibiotics used in therapy of acute enteric infection. The medicine acts as
    anticarcinogenic and anti-metastatic drug, thus preventing the formation of tumors through the
    activation of immune response in organism. Immunomodulating action of Cycloferon is
    manifested both as activation of phagocytosis, of cytotoxic T-cells and natural-killer-cells and as
    organism immune status correction at immunodeficiency disorders of different genesis.

    INDICATIONS
    In adults Cycloferon is recommended during combined therapy of:
    - herpes infections,
    - acute enteric infection,
    - chronic viral hepatitis B and C,
    - influenza and acute respiratory infections,
    - neural infections (aseptic (serous) meningitis, Lyme disease),
    - HIV infection (stages 2A-3B),
    - secondary immunodeficiency, associated with chronic bacterial and fungal
    infections.
    In children over 4 years old Cycloferon is recommended during combined therapy of:
    - acute and chronic hepatitis B and C,
    - herpes infections,
    - preventive treatment and therapy of influenza and acute viral respiratory
    infections,
    - acute enteric infections,
    - combined therapy of HIV infection (stages 2-3B)
    [This Message was Edited on 03/16/2011]
  28. heapsreal

    heapsreal New Member

    Here is another link mentioning cycloferon as well as other info on different interferon inducers
    http://www.arbidol.org/27390604.pdf

    One more link with lots of info but also mentions this about auto immune disorders- There is no danger of developing autoimmune phenomena. SO safe in auto immune problems and will try anf dig up some info i had on it helping auto immune conditions, http://www.polysan-ru.com/products/cycl/tab/

    As you read through this info what strikes me is that it seems to activate the immune system more then the new kid on the cfs block GcMAF which is used for stimulating macrophages. cycloferon has this ability but also nk cells and t-cells.

    cheers!!!

    [This Message was Edited on 03/16/2011]
  29. wrthster

    wrthster New Member

    I ordered the cycloferin from that pharmacy, thank you so much. Hopefully will be here in the next couple of weeks. Question, why do you have to take six weeks off? I know that is what Cheney says, but on the other side what if an Aids patients took six weeks off their cocktail drugs? They would probably die. Curious for your thoughts. And thanks Mikie as well. I will see what the doctor has to say. I have a feeling they may have practiced at one time together, because this Physician came from Ft. Meyers prior.
  30. heapsreal

    heapsreal New Member

    I take a break from it for the same reason cheney and other cfs docs say to take a break from immune modulators ie your body becomes less responsive to it. immune modulators are different to arv's and av's as they stop the viruses from replicating and stopping and starting these drugs allows the viruses to build a resistance to the drugs, where as the immune modulators used continiously loss their ability to stimulate interferon etc if that makes sense, they work in different ways.

    reading up on cycloferon today, they seem to do courses of treatment with cyclo and the benefits last upto a month after finishing in some illnesses, maybe by dropping the viral load down in combo with arv's/av's. I keep taking famvir/av's but probably should have restarted the cyclo earlier as i left it for 6-7 weeks, but also wanted to get some testing done while off the cyclo.

    testing on the cyclo was very positive as well as my symptoms. my lymphocyte(always high) subsets were down lower then i have ever had them measured before even while on famvir alone. I did still have some lingering fatigue which i think was due to my poor adrenal hormone(dhea/cortisol) testing, which im trying to improve but overreacting to treating this problem, so still juggling this around. Since of the cyclo though, i feel like i have had another viral type crash which was when i last got tested, so straight after the testing i started back on cyclo again.

    Let us know how u go on the cyclo wrthster, delivery time for cyclo seems to take awhile but thats to australia, way down under, lol.
  31. bobbycat

    bobbycat New Member

    interesting