Fifth Peptide (Amino Solution) Injection

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Mar 23, 2012.

  1. Mikie

    Mikie Moderator

    Some good news and some bad news. The FDA has approved this treatment but it must be called "Amino Solution" injections and not "Peptide" injections. Big Pharma has a hand in this. They run Congress and the FDA. BP is developing their own injections but theirs will likely cost a lot more than the ones from Oxford. Also, ins. isn't paying for them at this time.

    I have been feeling great since last week, despite some tachycardia, following a stretch of exhaustion. I don't know how long this will last but it's encouraging to know how well I can feel again. I shampooed my carpets yesterday! The tachycardia isn't life threatening at this point and it may be linked to the Synthroid I take. These shots heal hypothyroidism. I'll be off it and my HRT for a month until my next inj. and will get my bloodwork done the same day. Have to fast for both so might as well do them together.

    I'm resting today. I always take it easy the day of the shot but it's technically not necessary. I think it helps so I do it. Also, I can't take any meds, except my acetaminophen until Sun. My allergies are acting up a bit and I always have a headache when I can't take my allergy meds and am off my BP meds.

    I was starting to wonder whether the last two shots were doing anything excepting holding the line. All my symptoms were fine except exhaustion. Then last week, KABOOM! Energy! I guess one has to be patient when getting these shots. The body heals itself in some areas faster than in others. Healing isn't linear and some symptoms can return. When mine have, except for the exhaustion, they don't last more than about a day and are much reduced.

    If anyone is contemplating this treatment, I think it would be wise to get started because no one knows what the FDA will end up doing. So far, they aren't stopping the Oxford injections, as long as they aren't called "peptide," but they have the power to disallow them. I'm sure that as Big Pharma develops their own, they will pressure the FDA to do just that. If BP develops their own (several are in clinical trials) they will likely cost an arm and a leg.

    Hoping my healing continues and that those on this treatment do as well, or better, than I have.

    Love, Mikie
  2. deepak

    deepak Member

    Yay !! you back to feeling great.....hope triumphs again !!

    Very happy for you and pray the good feelings will last forever now.

    Do you know if these injections are available in the UK ? Uk is half the distance from India than USA is :)

  3. Mikie

    Mikie Moderator

    I believe they are available in all of Western Europe but they must surely be available in the UK, where they were developed. If you want to find out, I'm sure Dr. Dakos knows because he travels over there all the time.

    Thanks for being in my cheering section. I really appreciate it. Somehow, I feel as though I've turned a corner but I know that fatigue has a way of making return visits. One thing I'm doing is continuing to pace myself. I only do one big chore a day so I don't overdo it. I've been sick for 12 years now, so I've aged and, even if I hadn't gotten sick, I wouldn't be able to do what I could do 12 years ago. My CFIDS/ME was triggered full blown 22 years ago and I was never the same but it wasn't until 2000 when the FMS came along that I became disabled and bedridden most of the time. So, even with this new energy, I don't know what I'm capable of and don't expect to be as I was that long ago. My "normal" friends and neighbors slow down after 65 and can't do what they used to do. I'm very happy with where I am now.

    Hope you are doing well. Take care.

    Love, Mikie
  4. spacee

    spacee Member

    I'm thrilled for you too!! And for bringing the info to this board like you
    have on all your other things you have done over the years!!

    It does give us hope!!

  5. Mikie

    Mikie Moderator

    Thank you; I appreciate your support and kind words. So many come here who have lost hope. There are things which can help us heal but not everything helps everyone and, so far, there has been no cure. I don't call the injections a cure, but I believe they hold out the best promise for healing. My own experience has been amazing. The real test will be when we stop the injections after ten or twelve months. If the injections have retrained my own immune system, my body should carry on but some have to continue the injections or come back later for "booster" shots. At least, now I know I can feel better even though the healing hasn't been linear with most symptoms gone and energy finally returning (for good, I hope).

    Love, Mikie
  6. deepak

    deepak Member

    Do the doctors say that most people have to take the 10-12 injections and then they are ok for life - and some have to come back for more later ??

    Also, can you please tell which symptoms have gone away and which remain ?

  7. mbofov

    mbofov Active Member

    I'm very glad to hear the continuing good news. Your energy sounds fabulous ... something to dream about --

    I hope your progress continues -

    Best wishes,


  8. Mikie

    Mikie Moderator

    Thank you all for following my progress and for all your kind support. Nothing has given me more pleasure than being able to share my experience with this treatment with everyone. Our members have been so generous over the years and almost everything which has helped me is something I first learned of here.

    The younger a person is, the fewer the shots usually needed. For a teenager, only one shot may do the trick for something like allergies. The older a person is, and the longer the person has been sick, the more a full treatment of a year is likely to be required. Because we are not all the same, some will do OK with only 10 months and some may require more than 12. My doc thinks that with my excellent progress, the 12 months will likely do the trick. It is only a few who have to continue longer or have to have booster shots. Some conditions seem to respond more slowly than others as well. For instance, the shots for RA seem to take longer and don't seem to provide the instant results that the broad-spectrum serum that I take has done.

    When I say that progress isn't linear, I mean that I had expected all my symptoms to gradually improve together over time. That didn't happen. The very first night, my Sjogren's symptoms went away and I drooled like a dog over a pork chop. My eyes watered like crazy. Since then, I have had a few days of mild SS symptoms but they only last about 24 hrs. and are nowhere as severe as in the past. My arthritis in my hands and wrists went away that night and have not returned. I was surprised because I have some deformity in one wrist and one finger. That won't go away but the pain and swelling are gone. Yahoo!

    I no longer have FMS pain except for a little mild pain now and then. It never lasts either. The only thing which took so long was energy. The first two months, I had days of energy but the last two months, I had been exhausted. Last week, all of a sudden, I got a burst of energy and have been doing all kinds of things, including cleaning the condo, pruning bushes outside and shampooing my carpet heavy traffic areas. I still pace myself because I don't want to lose the roll I'm on. I only do one big thing a day. I make sure I get my rest and I'm eating better. I've lost my craving for carbs. If this keeps up, I hope to get some aerobic exercise and lose some weight.

    For anyone going into this, I suggest eating well and resting up beforehand. I eliminated Aspertame (Neutrasweet) and MSG from my diet. I also suggest going into it with no preconceived ideas of how the shots will work. Someone else may have a completely different experience than I. The good news is that one can usually tell from the first shot whether they will help. If after three shots there is no progress, they will stop the shots and the person has the option of getting a plasma evaluation or doing nothing more. Success is better than 90 percent over more than 30 years in Europe. I think those are pretty good odds. I felt that all I had to risk was, initially, $900. Over the year, it will be $3600 at $300 a month. I understand that some other docs charge a bit more per shot.

    What impressed me about my doc is how dedicated he and his partner are and how they continue to learn all about this treatment which is progressing along more and more conditions, including Alzheimers, Parkinson's and Autism. My doc's enthusiasm is so great that you can actually feel it. He gets the biggest kick out of seeing his patients get well. Every time he comes home from a seminar, he's like a kid with a new toy. He tries to keep his costs down as much as possible. He is a very humble person but likely a genius (I've been told he is). He holds down costs by practicing out of a very modest office. As far as I can tell, he doesn't have an ego like so many docs. I feel so very blessed to have found my doc and this treatment. I hope as many of y'all as possible can avail yourselves of this treatment.

    I also hope this helps answer your questions. If not, ask away and I'll answer. Again, thank you so very much for your enthusiasm and support.

    Love, Mikie
  9. deepak

    deepak Member

    Thanks and thanks :).

    I am not sure if you have mentioned your doctor before but could you please tell his name and in case he has a website or email id ?

    With love,
  10. Mikie

    Mikie Moderator

    I have given both doc's names in other threads with Dr. Dakos' e-mail address. He has a website. My Dr. is Dr. Gomeringer. Dr. Dakos is the one who knows more about who does the injections. I'll have to see if I can find the info again. In the meantime, do a web search on Dr. Dakos.

    OK, Dr. Dakos' website is but it's offline right now to make the changes demanded by the FDA.

    Love, Mikie
    [This Message was Edited on 03/25/2012]
  11. halfacre2

    halfacre2 New Member

    So happy to hear about your latest injection. I have one more week to get to my 3rd one. I too am still doing well. I hope i make it the full 3 wks so i can get to one a month. I have had some fatigue but no pain. I am very pleased with my results since i have RA. Keep us posted and i will do the same.
  12. Mikie

    Mikie Moderator

    Vicki, I'm so happy for you, especially with the RA. Please do keep us updated as you progress.

    Leah, I think I've discovered that it's my BP meds which are making me so tired. When I'm off of them, I feel great. Gotta talk to the doc about this.

    This is a brand new concept for most of us and it is difficult to get our foggy minds around it. I had to keep reading the brochure and it wasn't until I actually started the treatment that I kinda figured it out. Of course, the synthesizing of the peptide sequences is top secret and I doubt any of us would understand it at that level anyway. I've never figured out electricity, even though my ex tried to explain it to me but I do know when I plug something in and turn it on, all kinds of magical things happen. I think I'll have to be content to just look at this treatment the same way.

    It was a big leap of faith which got me into the treatment but I'm glad I did it and it's working. I wish it were available for everyone.

    Love, Mikie
  13. deepak

    deepak Member

    Are you on betablockers ? I hear they can cause tiredness. Also I guess if the BP medicine has a diuretic it could lead to some lack of electrocytes.

  14. Mikie

    Mikie Moderator

    First, Deepak, I cannot take Beta Blockers as they cause asthma attacks. One of the reasons I need to supplement for electrolytes is due to the diuretics in my BP meds. I have to take them as heart attacks run in my family. The only ones I've been able to tolerate are Cozaar and an ARB, Clonodine.

    I was extra tired yesterday and this morning. Then, as is common following an inj., I started to purge and made many visits to the john and sweat like a pig. This evening, my energy returned and I was almost manic. A couple of gin 'n tonics helped me to calm down. I rested most of the day, sitting out on our balcony with neighbors. I hope this energy keeps up now.

    Until, I finish these injections, I can't really tell what is making me most tired and what isn't. All I can do is deal with whatever is happening at the moment. I think it was a good call to stop the Synthroid. We'll see about the HRT. I may return to them in a month.

    I am definitely improving but the road isn't perfectly smooth. That's OK as long as I get to my destination. As I heal, I'm sure there will be changes in meds. Of course, I'll post to keep everyone updated. Even if we are all different, I think it helps to have others to document the experience to, at least, give us an idea of what this treatment is like.

    Love, Mikie
  15. Mikie

    Mikie Moderator

    I am definitely noticing a difference between this last inj. and the two preceding it. I'm not full of energy but I have much more than I did. I had a short Herx/purge reaction and have been better ever since. Went out with friends today for lunch and we had a really good time. To even be able to do such a simple thing is beyond what many of us can hope for. For a long time, it was beyond what I could do.

    I've been able to clean in the condo. Yesterday, my neighbor and I sanded a small metal and glass table and spray paint it. I usually only do one thing a day to pace myself until I'm sure things are really improving. Years of being sick make us wary of jinxing good health.

    Love, Mikie