Started prolotherapy in Europe for my whiplash injury (craniocervical instability?) which I believed caused my ME/CFS

[Wayne]

Hi @JelenaS, @Anjuska -- I truly empathize with what you're going through, as I've dealt with serious neck and vertebrae issues since a serious head injury/whiplash as a teenager. What really shifted things for me was doing a procedure called AtlasPROfilax (AP). I've written about it fairly extensively here on Phoenix Rising in case you would want to check it out. -- Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

From my understanding, Europe has more AP practitioners than anywhere else in the world, so it might not be too difficult to find someone to do it for you. Also, I've learned to do the AP on myself, mostly by doing some various massaging around the atlas itself, which is a big part of what the AP practitioner does. Let me know if you have any questions. I wish both of you all the best as you chart your course going forward.

 

[JelenaS]

Cavallino doesn’t like dr. Hauser, neither this one doctor in Serbia that I found is doing prolo. They said some people ended in hospital because of his treatment. This dr. Sadeghi from Texas doesn’t share their opinion, he says that dr. Hauser is a great doctor and the reason some of his patients got injured is simply because he did A LOT of patients during the years. Who to trust? From what I saw on his channel, although he’s eccentric, he sounds like he knows what he’s talking about and a few people I’ve found on yt had only positive things to tell about him. Megan Klee is my favourite, she cured her dysautonomia with prolo done by him. I would also really like to be treated by him, but since it would be really expensive (like, we would have to borrow money or sell something), I’m starting here. PS. Dr. Hauser said that in some patients, prolo doesn’t work, in which case he then moves to PRP, and if that doesn’t work, stem cells.

 

[Anjuska]

Dear Wayne, we have AtlasPROfilax in Croatia, but even if they adjust my Atlas, he won t be long in right position ( lax ligaments= and hEDS )- i have permission to do any manipulation with my neck.

 

[Mary]

If we didn't have imaging, wouldn't all MS be included in ME/CFS based on symptoms?

I don't think so. ME/CFS is distinguished by PEM. Remember the 2-day CPET testing? ME/CFS patients were the only ones who did worse on day 2 of the testing, some verging on heart failure. Every other group, including MS patients and those actually with congestive heart failure, did better on day 2. I think for now the 2-day CPET is our biomarker. Of course it's expensive and too difficult for many to do and could throw some into a bad flare such that they decrease in functioning so it has a lot of drawbacks, but it's very compelling evidence for the existence of PEM.

https://me-pedia.org/wiki/Two-day_cardiopulmonary_exercise_test

 

[Osaca]

I don't think so.

I agree with what @hapl808 said. If MS didn't have a biomarker, the conditions would be clumped together and one wouldn't be able to seperate them based on one miniture study which was never broadly replicated (did they even correct the statistics for all the comparisons?). Otherwise we should also say that every ME/CFS patients that doesn't do similar to the other patients on a 2-day CPET doesn't have ME/CFS, which according to Ruud Vermeulen would be hundreds of people who nowadays are considered to be ME/CFS patients. A miniature study wouldn't be sufficient to even understand that one is dealing with different conditons. This study was only significant because MS already has a biomarker.

 

[Murph]

in case anyone else is like me and thinking, What is Prolotherapy?
Prolotherapy is the injection of an irritant solution (usually a form of sugar called dextrose) into joints, ligaments or tendons. It usually involves three to four or more shots given monthly for several months, followed by occasional, as-needed injections.

In people with osteoarthritis (OA), the 80-year-old therapy is most often used to treat join pain in the knees, fingers and thumbs. Most doctors who treat OA, however, use prolotherapy rarely, if at all.

“I would not recommend prolotherapy because I believe the jury is still out on its efficacy,” says Julius Oni, MD, assistant professor of orthopedic surgery at Johns Hopkins University School of Medicine in Baltimore, Maryland. “Most studies in the treatment of osteoarthritis are relatively small and show some short-term benefit, with no definitive mid-term or long-term benefit.”
https://www.arthritis.org/diseases/more-about/prolotherapy-for-osteoarthritis

To me it looks low risk. the doctor quoted above literally cites studies showing benefits, he's just conservative. I don't believe it will work for most people but I do think it's a much better idea than going straight for neck surgery.

 

[Wayne]

Dear Wayne, we have AtlasPROfilax in Croatia, but even if they adjust my Atlas, he won t be long in right position ( lax ligaments= and hEDS )- i have permission to do any manipulation with my neck.

Hi @Anjuska -- When I first had the Atlas Profilax treatment done, it held for over ten years. I then was given an anti-nausea medication in an emergency room (ER), and it no longer held. I then had the AP redone a few months later, and it gave me a LOT of relief, but it only held for about 1-2 days.

It was then that I began to wonder if I could give myself an AP treatment, and if I did it every day, could it perhaps keep my atlas in its proper position. It turns out I was able to do that. I just did some searching on some of my posts describing what I did, and THIS POST gives about the best description.

Another exercise I do that I think continues to support my neck health is something I refer to as the Twirling the Big Toe technique. The link will take you to on online post I made a few years ago with a description on how to do it. -- I've also discovered that doing some very simple acupuncture points in my neck area significantly improves my neck function.

I'd be happy to answer any questions you may have on any of these techniques. They have worked, and continue to work well for me. I think it's likely others could experience improvements as well, but as we all know, not everybody is going to have the same results.

Best...

P.S. You may also want to consider looking into BPC-157

 

[JelenaS]

Hi @JelenaS, @Anjuska -- I truly empathize with what you're going through, as I've dealt with serious neck and vertebrae issues since a serious head injury/whiplash as a teenager. What really shifted things for me was doing a procedure called AtlasPROfilax (AP). I've written about it fairly extensively here on Phoenix Rising in case you would want to check it out. -- Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

From my understanding, Europe has more AP practitioners than anywhere else in the world, so it might not be too difficult to find someone to do it for you. Also, I've learned to do the AP on myself, mostly by doing some various massaging around the atlas itself, which is a big part of what the AP practitioner does. Let me know if you have any questions. I wish both of you all the best as you chart your course going

 

[JelenaS]

This is a photo of my neck after prolotherapy. Some of the injections can’t be seen as they are in my hair area. I didn’t count how many I got, but it was at least 20. Also, prolotherapy is not without risks, I don’t know about other areas, but for neck it is the case. The doctor that’s treating me says that there are no risks though if it is done by protocol.

 

[JelenaS]

@Wayne, from what I read about atlas manipulations, it is just a temporary relief, and it also can be dangerous.

 

[JelenaS]

So, I did the second prolotherapy here in Serbia few days ago. I don’t know what to think about it. The first prolo I received from dr Sadeghi (National headache institute) on the conference in Greece was quite different. He did at A LOT of injections to my neck and immediatelly after therapy my fatique has lifted and my head got clearer. The neck was extra sore for the next two days. This doctor in Serbia only gave me around 10 injections and I didn’t feel anything, just a minor soreness after the therapy plus no detectable improvement in my fatique. The doctor doesn’t know anything about ME as an illness, nor about its possible cause with CCI and simmilar conditions. He also suggests that I do a lying down MRI which as I’ve read, doesn’t show any of this. However, he does prolotherapy on different parts of the body, the neck included.

I am thinking now about getting an evaluation from dr Gillette and doing an upright MRI. Does anyone have any experience with the procedure with dr Gillette?