How I recovered.

Sushi

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I do not know what a DO is but being licensed to practice in Florida, or London, is no guard against phoney medicine.
From Mayo--here is what an D.O. is:
A doctor of osteopathic medicine (D.O.) is a fully trained and licensed doctor who has attended and graduated from a U.S. osteopathic medical school. A doctor of medicine (M.D.) has attended and graduated from a conventional (allopathic) medical school.

The major difference between osteopathic and allopathic doctors is that some osteopathic doctors provide manual medicine therapies, such as spinal manipulation or massage therapy, as part of their treatment.

After medical school, both M.D.s and D.O.s must complete residency training in their chosen specialties. They must also pass the same licensing examination before they can treat people and prescribe medications.
"My bolding."
 
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From Mayo--here is what an D.O. is:
"My bolding."
I suspected it might be that. Unfortunately, passing the very best licensing examinations is no guard against doctors offering things with false justifications. It happens in the most respectable of hospitals. It happens in psychological medicine departments treating ME/CFS it seems. I too am glad that Hugocfs is feeling better but the peptide stuff just makes no sense at all and seems never to have been put through proper testing.
 

maddietod

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Hugo, thanks for coming back and giving us this update. I've missed you and hoped you were well. Congratulations on your recovery!

I have a local CFS friend who has done exactly this kind of rotation diet for years. She hasn't improved at all, but since she sticks with the diet, I imagine she feels worse when she goes off it.
I've ordered the book.

I talked with my MD about peptides. He doesn't administer them for exactly the reasons you cite. He's very much in favor of my trying them if I can figure out how to do it.

Thanks again for sharing. It's great to have you back, even if you only stay briefly.
 

barbc56

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Are peptide injections legal? Are there different peptides for different "treatments"?

Are there any phisiological processes to justify using these peptide injectiond and are there any health conditions where these injections are a legitimate treatment.

When I google peptide injections, I get a lot of dodgy sites about these injections for body building and sport doping but nothing that looks like a proven treatment.

If doctor’s are giving these injections, "under the radar" they need to be reported to their state medical board.

So far it looks to me to be pseudoscience. I'm trying to keep an open mind but someone needs to convince me.

Edit. Found more info. It looks like some peptide treatments are legit? What kind of peptide injections are people getting here?
 
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Sushi

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Are peptide injections legal?
Yes, they are.
It looks like some peptide treatments are legit?
I've seen lists lists of M.D.'s who give these injections. They seem reputable and give them for specific conditions. Only the patient can report whether or not they benefitted.
 

garcia

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Peptides are an exciting area of research / treatment, and these peptide shots may indeed help some people, but I want to clarify a couple of things about "Oxford Peptides".

Let me precis this by saying I am no fan of Stephen Barret or quackwatch, but even a stopped clock is right twice a day, and he has an interesting document sent to physicians by "Oxford Peptides":
https://www.quackwatch.org/06ResearchProjects/saam/amino_acids.pdf

You can see that the address given for the organization behind "Oxford Peptides" is
OXFORD CENTRE OF MOLECULAR IMMUNOLOGY
CLARENDON HOUSE
52 CORNMARKET STREET, OXFORD

which is somewhat suggestive that this product is somehow affiliated with Oxford University. It is not. There is no such thing as the "Oxford centre of molecular immunology". Do a web search for it if you don't believe me. Clarendon House is basically an office complex, where anyone can hire an address. If this organization were in any way legitmately affiliated with Oxford University it would have either a University or a Business Park address. It wouldn't have a random office address on Oxford's main shopping street! Also no website. Really? In this day and age?

The Document also states:
"Medical researchers in the ancient university city of Oxford, England, in association with a group of their Swiss colleagues, completed a medical research venture which had lasted for over twenty five years. The result of this project is a new, completely non-toxic and extremely effective therapeutic approach to some of the most serious diseases which could not be effectively treated in the past."
The above is a masterclass in pure spin / mythology! You have to hand-it to whoever wrote that. Just look at the terms they use: "ancient university city", "Swiss Colleagues", "medical research venture which has lasted over twenty five years". I'm surprised they didn't mention Mount Olympus or the Holy Grail.

The stuff about self/non-self and treating autoimmunity is ok, but the document doesn't actually explain how these peptides address any of these issues. All we are told is that magically:
"Solutions of Peptides had finally been developed for several serious diseases which could not be effectively treated until now"
We are also told:
"Subsequent clinical trials, where more than 15,000 patients had been treated, established the fact that this form of therapy is completely safe (there had been no fatalities associated with the treatment - and not even one single adverse reaction was recorded which would necessitate a discontinuation of the treatment, throughout the entire five years of clinical trials.)"
So lets get this straight. Clinical trials involving 15,000 patients (who does clinical trials with 15,000 patients???) over 5 years, and not one single adverse reaction? Also apparently not one single publication. If these were actual clinical trials (rather than made-up fictional trials) there would be all kinds of ethical hurdles which means they would a) have to disclose what these peptides actually were and b) have to publish safety data.

They go on claim:
"96 per cent of patients responded to the therapy, most within days of being commenced on the treatment."
Only 96%?! Why not go for 100%!!!
Finally we are told just how lucky and special we are to be receiving this treatment because apparently:
"This therapeutic modality is presently confined to only few selected medical centers - and it will be so for approximately another one year. Only limited amount of this therapeutic material can be produced and so only those patients who do not respond to the various symptomatic treatments currently available are normally chosen for this therapeutic regimen."
Again this is pure bullshit. Create a false sense of scarcity. The thing about peptides are that they can be produced in any quantity whatsoever since they are just made up of amino acids, and unless there is suddenly a worldwide shortage of a particular amino acid which nobody told me about (in which case we are all in trouble!) it is pure fabrication. The only limiting factor in creating peptides is the difficulty of the procedure, which would be reflected in cost. Scarcity never comes into play. In fact the more you make, the cheaper they get.

I'm not even suggesting that these peptides don't have any therapeutic value. I am suggesting that they are vastly overpriced and being peddled by a company which is playing fast and loose with the truth. And at the end of the day, they could contain absolutely anything. Which I think for the business is key. Because if they can contain anything, then they can't be copied, and actually even if they did produce miracle recoveries, we have no idea what is actually being injected into these people. A very scary situation indeed.

I am not averse to injecting varied stuff into my body, but I am averse to not knowing (at least roughly) what is being injected into me. I would never inject a proprietary formula of any sort. And medically it is highly unethical as how can a patient give informed consent without knowing what they are being injected with?

Forget Swiss colleagues, this thing has more holes in it than Swiss cheese!

Anyway Barret has a few more lurid details on the doctors behind this in case anyone is interested:
https://www.quackwatch.org/06ResearchProjects/saam/overview.html

I sincerely hope this is the first and last time that I have to quote quackwatch! Please people, do your own due dilligence and don't let some doctor inject stuff into you without knowing exactly what it contains. So then if you do happen to have a miracle recovery, at least you can say what exactly caused your miracle recovery.
 
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Dainty

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@Hugocfs thanks so much for sharing your story. It took a lot of courage to post that.

I have also recovered from severe to a more mild state, and the factors involved in my recovery have been pretty different from yours (though it also involved an awesome DO). I relate hard to several things you've mentioned, though - the need to try to move on and just forget afterwards, processing the trauma, avoiding the forums, etc.

I appreciate all genuine information about patients' experiences posted. I think we can never have too much of it. Sometimes it's hard to prove or fuzzy or whatever, but I say leave the proving to the scientists. All we can do is share what works (or doesn't!) for us.
 

edawg81

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I did a little bit of research on these injections:

I believe this is the practitioner?
http://www.lifefamilypractice.com

If so, the treatment seems to be: "Amino Acid Injections".

I looked briefly online and through other websites:
https://www.drugs.com/pro/amino-acids-injection.html

These look like they may impact energy metabolism somehow? Similar to other that have improved with NO:
http://me-pedia.org/wiki/Nitric_oxide_hypothesis

This is all speculation on my behalf... and I am no expert so...
Congrats on your recovery.
 

Hugocfs

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Here's an update. After I posted last year, I went on a vacation in July. We spent a couple of days in Boston and unfortunately I overdid it. We walked about 7 or 8 miles one day on the Freedom Trail, but what really blew a fuse was climbing up and down the Bunker Hill Monument. Big mistake. Immediately, my cfs symptoms came back: leg muscles twitching, burning in shins, shortness of breath sensation, legs feeling leaden, and generally tired and sleepy. Right after getting back from vacation, I got a peptide shot. But nothing happened. I did not get the normal response at all. Needless to say, I was very distraught. After a couple of weeks, I saw the doctor and found out that I was given the wrong peptide shot!
Anyway, I took it easy for the next six weeks and then got the correct injection (HS). More importantly, I got back on track. Once every eight weeks I was getting HS shots. This Spring I finally felt like I was back where I needed to be, but I was still struggling with daytime sleepiness. So in April I got a GD shot which cleared that up. Now last week, I got my annual TH peptide shot for hypothyroidism. (I have been off synthroid for almost 2 years now.) My hope is that now I won't be needing any booster shots any time soon. And that I have wised up and am pacing myself a little better. It was a harrowing experience, not to mention an expensive one.
Now here's a question. I continue doing a lot of other things including following the rotary diversified diet, taking a bunch of supplements, and still on low dose naltrexone. For different reasons, I have decided to stop seeing my traditional cfs clinician. But she wrote my prescription for the ldn. Does anyone have a source of legitimate naltrexone that can be obtained without a prescription?
 

Sushi

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Does anyone have a source of legitimate naltrexone that can be obtained without a prescription?
I know that you can get it from India, but I don't have the link. Someone else?
a good functional medicine doc or ND will prescribe LDN
My present and past nurse practitioner prescribes it for me.
 
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I've been hearing a lot about peptides recently, they do look extremely promising.

Look up "antimicrobial peptides". A few others I've been hearing about are BPC-157, Epitalon, DRGN-1 Komodo dragon peptide. And of course there are some websites which list a bunch of other peptides. They're around $50 and you can take them orally too.

I really want to try them but I'm super poor.
 
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@Janet Dafoe (Rose49) Do you know if Ron ever tried the Oxford peptides or any peptides on the blood? and did it get any reaction??
I tried the BPC-157 and did great (sublingual) I quit because is hard to get the syringes to get the liquid out of the ampules. I tried some amino acids pills (something factor) with no results.
 

knackers323

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Have you ever tried bpc peptides from tailor made compounding pharmacy? They really help heal the gut and give energy. The Oxford peptides are a miracle peptide and they work well tougher.
@maryteddy do you know by what process the bpc 157 gives energy?

I'm trying it now and it's definately working.

Where are the Oxford peptides available?

Thanks
 
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Here's an update. After I posted last year, I went on a vacation in July. We spent a couple of days in Boston and unfortunately I overdid it. We walked about 7 or 8 miles one day on the Freedom Trail, but what really blew a fuse was climbing up and down the Bunker Hill Monument. Big mistake. Immediately, my cfs symptoms came back: leg muscles twitching, burning in shins, shortness of breath sensation, legs feeling leaden, and generally tired and sleepy. Right after getting back from vacation, I got a peptide shot. But nothing happened. I did not get the normal response at all. Needless to say, I was very distraught. After a couple of weeks, I saw the doctor and found out that I was given the wrong peptide shot!
Anyway, I took it easy for the next six weeks and then got the correct injection (HS). More importantly, I got back on track. Once every eight weeks I was getting HS shots. This Spring I finally felt like I was back where I needed to be, but I was still struggling with daytime sleepiness. So in April I got a GD shot which cleared that up. Now last week, I got my annual TH peptide shot for hypothyroidism. (I have been off synthroid for almost 2 years now.) My hope is that now I won't be needing any booster shots any time soon. And that I have wised up and am pacing myself a little better. It was a harrowing experience, not to mention an expensive one.
Now here's a question. I continue doing a lot of other things including following the rotary diversified diet, taking a bunch of supplements, and still on low dose naltrexone. For different reasons, I have decided to stop seeing my traditional cfs clinician. But she wrote my prescription for the ldn. Does anyone have a source of legitimate naltrexone that can be obtained without a prescription?

HI Hugo. Is there any way I could contact you by email re: peptides? I'm about to begin this therapy in Florida but still have a few questions. The doctor suggested HS and PD but I'm not sure what the latter is other than neuro modulation. Would really appreciate a private convo if you're to it. Thanks.