Discussion in 'Fibromyalgia Main Forum' started by Mikie, Feb 12, 2011.
Has it helped? My sister had one shot and it did very little, but she is trying to get second shot.
One shot may not tell one anything about whether or not they will work. This is a long-term treatment and they usually do three injections before giving up. Good luck.
Hello, I am new in this forum. I actually suffer from multiple food allergies. I am about to start LDA (low dose allergen) for both me and my daughter, however, after reading about peptide therapy I don't know what to do anymore. It seems this type of therapy offers great benefits and it's relatively easy to follow (no strict protocol or crazy diet before and after the injection etc)- The problem is that I am in the UK and I can't find anything here! Does anybody know of a doctor that offers this therapy here? Or any other info about it? Thank you all
The peptide treatment came from Oxford University and their research lab. Contact the University to see whether you can find a doc there who does these injections. Good luck.
Hello Mikie and Everyone! I am new to this forum and this is my first post! If I am posting incorrectly , somebody, PLEASE let me know and I will correct it. LOL
I am interested in the Peptide Therapy and Transfer Factor. I am not sure if both are needed and/or if they are complimentary??? I have been trying to research the peptide therapy but as you know, there is not a lot of information about it, at least that I could find.
Mikie, It seems like you completed the peptide therapy about a year ago. Is that correct? I read where you had improvements with it. And I also read that you used and like the Transfer factor products. So are you redoing the peptide injections? Does it take more than one 'round' for some patients? I saw where the doc has a patient d/c all supps and Rx for 3 days before and after an injection. Then do you take the transfer factor until 3 days before your next peptide injection?
Please forgive all my questions! I appreciate any help or suggestions that you may offer. I know that you may not be feeling well so whenever you feel up to replying is OK.
Thank you very much for sharing your experiences over the years! Even though I just found this forum this week, it has been very encouraging and helpful to be able to read about what you have done!!!
All the best,
It's impossible!! I can't find anything in the UK!! I have been calling docs in the USA hoping that they would help me, maybe leaving a name or something! I tried to call Dr Dakos on the number on his website but the line must have some problems as it says the number is not in service?! I tried to call other docs but they say they don't offer the treatment anymore etc. so no luck calling Oxford it's no use they probably have endless labs and the only article I have to rely on has zero specific info..
Dr. Dakos died in February.
Did you try here?
They make the GcMAF so maybe they could help you find a doctor.
Oh my that would explain many things..I'm genuinely sorry to hear that. From what I read in many forums and discussions I understand this Dr Dakos to be a rare doctor and a man of principles. Sorry he passed away. Thank you for your help I'll check the link.
You can try to get in contact with Dr. David Gomeringer, 239-768-5544 in Ft. Myers, FL. He worked with Dr. Dakos.
Transfer Factors are not necessary when one is on the injections. BTW, the FDA has banned the use of the term, peptide injections. Instead, they insist we call them, amino acid solution injections (you tax dollars at work Older people who have been sick a long time usually require monthly injections for a year. If symptoms reappear, one can get a booster shot; I did. It worked and I needed no more.
Does anyone know of a Dr who does this peptide treatment or amino acid solution injections in the Raleigh, Durham, Chapel Hill area. Or how I can find out. There seems to be little information to be found. Thank You, Sally
Mikie, thank you for your reply. I called dr Gomeringer last night, what a kind person he sounds. He really wanted to help me to source the treatment but unfortunately he didn't know- I suppose I could always fly to Florida and maybe the doc would leave me extra stock of solutions so I would have enough for some time? We'll see. Thank you for your support
I do know that some patients have seen the doc and then had the solutions sent to them to self-inject. I don't know why there isn't a list of docs who do these injections. You might try Dr. Gruenn to see whether he can help. Eventually, some doc must know something. I think because docs fear the FDA's hounding them, they keep this on the down low. Big Pharma will no doubt eventually figure out the peptide sequences and try to make a bundle on these shots. Big Pharma runs the FDA and heavily lobbies congress. My doc works directly with Oxford University and their research facility. He is a very nice man and very humble and unassuming. I like him.
Thank you Mikie- I tried dr Gruenn last night I spoke to I think it was the receptionist and I explained I was looking for the treatment here in the UK - she said I would need to come to California.. I left my email and I hope in a further help- I contacted the institute here in oxford who deals with it- no tel number just a very hard email to find after a few phone calls and the email returned back to my account as never received! Lol at this point smile is an option?
I was wondering if you know anything about possibl side effects that can occur with this therapy- I can't even search for them cause I don't know what's inside the solution- however I read a form that was given from a doc in the US to a patient to sign before the injection is given and it listed the side effects there, none it is said to be serious but palpitation and tachicardia were also mentioned and I was wondering if you know anything more about this- thank you so much
I am hoping this works, my iPad was not allowing this.
I was on these shots for 4 years at $300 a shot. I did fabulous on them for 8 months and then all hell broke loose.
I have CFS and Fibro with Sjogrens and CVID.
After going off of them, I cannot seem to not do them anymore. It's like my body can't function without them. The cost is too high. My pain is now through the roof. It was never good on them, but now it is so much worse.
Here is something I also noticed about them; they took away interest. My interest in life waned. My specific shot was for food allergies and that was helped but interestingly, while on them, I became a Celiac and milk intolerant completely.
My food allergies are not too bad anymore, but my pain is through the roof. I am contemplating going on them again for pain relief, but I still had pain. But, I can't stand the thought of the price and the fact that they made me feel "DEAD." I had no desire at all.
Who wants that?
We don't know enough about these shots and the long term affects. I am unhappy that they didn't continue to really work for me after 8 months and what exactly did it do? My doc would never really explain that. I didn't like that, either. I need to understand...what is this?
But, I did it for 4 years due to desperation. I am glad I did it and not so glad all in one. It's too expensive and I never had the benefit that Mikey had.
By the way, my doctor says that the main doc in Germany or Spain who does this...is not getting peoples blood work back to them until a year later, to tell them which shot they need exactly. This totally baffles me.
Are you all getting your bloodwork back before a year? I live in PA. I am having it done here, but my doc is saying it's nearly impossible. Is he full of it, or what is going on?
I would love to do a shot for pain.
Thank you so so much for your story- it's important to have a general knowledge of the therapy, good and bad feedbacks are both appreciated- I'm trying to create on Facebook a SAM Group - It would mean a lot if any of you guys on here would be interested- we can potentially help other people and people on the therapy at the moment- since as you know there isn't much info available anywhere- even better if we are spreaded around the world - I am from the UK and I am looking for docs who could administer this closer to me. Although I ended up going to the US for the first shot..I so far had huge improvements- but you Sick Songbird are reporting of decresed intest in life- that sounds scary. I guess if you are doing it for food allergies you are using PA?- pls guys if you are interested in the group let me know-
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