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

[JelenaS]

I suspected that I have neck instability (the thing Jennifer Brea was having a surgery for) which I believe caused my ME CFS. Prior to the full blown onset of ME symptoms, I had a whiplash where I hurt my neck, but never visited the doctor despite having occasional strong pains at the base of my skull and neck.

I found a doctor from Italy who does prolotherapy, so I had an assessment and a therapy 4,5 days ago. Immediately the day after therapy I felt better, my fatique lifted a lot and my mood was better. It lasted for a few days, just as the doctor told me will. Now I am back to where I was before the therapy, which he also told me will happen. The first sustainable results are expected to happen after at least 3 weeks if the prolotherapy works for me (for some people it doesn't work). Some people experience improvements after a few sessions. Sessions are done every 3 to 4 weeks.

My intention is to document my journey with prolotherapy here, with hope that it can be of help to other ME patients.

 

[Mary]

@JelenaS - I think there are a lot of people here who will be very interested in how you progress!

 

[Osaca]

Having absoluetly no knowledge of prolotherapy and a quick google search mainly describing that it lacks any scientific evidence what are your main reasons for consulting this doctor in Italy and what is his basis for treating you?

All the best to you! I hope it goes well! I think many (including me) will be very interested in your progress as the neck surgeries seem rather off putting for many, as well as Dr. Gilete seemingly being the only doctor with sufficient expertise making the collection of second opinions by other experts impossible.

 

[JelenaS]

By investigating about craniocervical instability, I came across Caring Medical and dr. Hauser in Florida. He has lots of articles and youtube videos about CCI and ME symptoms. Then I found people who did neck fusion surgery and also people who did prolotherapy (with dr. Hauser and other places) and I found they had partial improvements in their symptoms or a complete remission. One example is Megan Klee on youtube, she did prolotherapy for her POTS and disautonomia and is now symptom free. Since I am from Serbia, being treated in Florida would be extremely expensive for me mainly because I would have to stay for a few months and I don’t have any friends or relatives there. So I tried to find somebody closer and I came upon this doctor in Italy. He assessed me and, although he couldn’t do digital motion x ray to determine the degree of instability as dr. Hauser can, he saw that definitely I have consequences from my whiplash in the form of painfully tight muscles and misalinments. We met in Greece where they had a conference with prolotherapists from around the world and I had luck that there was a dr. from Texas who wanted to do my whole neck including C1. The doctor from Italy doesn’t do C1 as it is dangerous. So from now on I will continue doing prolotherapy without C1 and hope that it will help with my ME symptoms. Italy is still far from me and it would cost a lot to travel there once in 3 weeks or a month so one doctor from Bulgaria is an option.

 

[JelenaS]

Pardon, Romania

 

[JelenaS]

If I had ME which doesn’t respond to any other treatment and I didn’t have a whiplash history, I would still check if I have CCI/AAI as many people with symptoms didn’t have any injury they can point at, and they had improvements with prolotherapy or neck fusion surgery. Jennifer Brea didn’t have any traumatic injury nor did she have EDS, as far as I know. This girl, Megan Klee, also didn’t have it. In some people, CCI came from EDS.

 

[Osaca]

Thanks for sharing.

The problems I have with going down this route where you assume to not have ME/CFS, but something that causes very similar symptoms, is basically that, at least to me, it’s a never ending route without any scientific experts or at least lacking any scientific publications on how it can present similar to ME/CFS (I could of course be incorrect about this). The main connection with these tissue disorders, for the lack of knowing a better name on my behalf, to ME/CFS seems to be EDS. However, there’s close to no research or publications in this direction. The only study I know in this direction by Henderson seems to have no connection to ME/CFS from what I can tell.

The situation in ME/CFS research is extremely dire, but I feel that there’s at least some very well established scientists with extremely reputable publications, for example Scheibenbogen and you can always contact a second expert for second opinions and read the literature. On the other hand for things like High intracranial fluid pressure, Cerebral spine fluid leaks, CCI, Chiari, atlantoaxial instability, Thethered Cord and probably some other conditions I’m not even aware of, this doesn’t seem to be the case. Measurements are either extremely difficult, can only be performed by certain individuals, who are always in private practices and second opinions are impossible due to the lack of experts.

From my extremely limited knowledge on CCI it seems that there’s one main specialist Dr. Gilete. He decides whether you have CCI and what type of treatment would be the correct one. Due to the lack of other experts you cannot really get a second opinion. Nor can you read up in the scientific literature what the connection to ME/CFS symptoms is, since this literature doesn’t exist at all and you’ll have to trust some YouTube videos or self written homepage descriptions.

The recovery stories (for example Jen Brea) on the other hand are always seem extremely miraculous and better than anything available in ME/CFS, but I struggle to understand how relevant they are for someone who has been diagnosed with ME/CFS. It’s really hard to discuss these problems for me since there clearly are some patients that do present similar to ME/CFS and who have profited from these treatments, but on the other hand there’s no scientific backing whatsoever.

 

[hapl808]

on the other hand there’s no scientific backing whatsoever.

This is the general problem with all things ME/CFS. Which personally I don't really view as a disease, but as a general symptom bucket disorder. The symptoms are wildly varying, as are abilities, presentations, etc. If we didn't have imaging, wouldn't all MS be included in ME/CFS based on symptoms? Imagine if all autoimmune diseases had no biomarkers or imaging and were just 'autoimmune disease'. The symptoms would be all over the place, kind of like you see here.

I think trying things that looks like a good risk/reward ratio and hoping for good outcomes is the best we can get at the moment.

 

[Osaca]

Yes, I think if other diseases like MS wouldn't have a biomarker they would all be bunched together with ME/CFS. So it's more than likely that many things now considered to be ME/CFS will eventually be untangled into very different diseases.

However, what I find to be very different from the ME/CFS situation, is that whilst there's basically no knowledge of ME/CFS, there's an abundance of negative results, i.e. there's evidence that all the markers we currently know of are irrelevant and no one can really prescribe treatments on the basis of these. There's only trial and error to try to address or possibly try to adress symptoms that are half-way diagnosable, for instance endothelial dysfunction.

If I now look at the CCI causing ME/CFS symptoms then there's absolutely no research. So a doctor can always argue that your results should lead to a specific treatment and you don't have any information whether any of it is actually true, you just have to trust this one doctor to do this very expensive and highly invasive surgery.

To some degree all the negative results of ME/CFS are evidence for the fact that no one can advertise some specific treatment (apart from possibly Ampligen or just experimental treatments). For tissue disorders causing ME/CFS symptoms this seems a bit different, as there are no results at all, including no negative results. Of course it still heavily depends on the individuals personal perspective and history and the case of @JelenaS seems more reasonable and the risk/reward ratio seems extremely reasonable to me, coompared to perhaps someone who has a viral infection and then developes ME/CFS and neck problems. It seems like prolotherapy is pretty risk free, comparably cheap and uninvasive, so it's at least a reasonable attempt to try to adress ones own illness. After all I'm ready to try all sorts of things based on my own risk/reward criteria based on the foundations of knowing what we don't know about ME/CFS.

 

[Hip]

The main connection with these tissue disorders, for the lack of knowing a better name on my behalf, to ME/CFS seems to be EDS.

Several factors can cause craniocervical instability and related spinal conditions, with EDC being just one of these factors. You might like the MEpedia article on CCI which provides details. PR also has a CCI sub-forum where there is a lot of information.

The CCI survey (see the spreadsheet results) shows a lot of ME/CFS patients with CCI or related conditions make major improvements with surgery. There is at least one patient there who moved from moderate to remission from prolotherapy alone.

But there are also ME/CFS patients with CCI or related conditions for whom surgery failed to have any benefit.

From my extremely limited knowledge on CCI it seems that there’s one main specialist Dr. Gilete. He decides whether you have CCI and what type of treatment would be the correct one.

Dr Gilete is one of the world famous CCI specialist neurosurgeons, but there are at least half a dozen others of equal renown.

Diagnosis of CCI is done according to internationally set standards, and involves skull and spinal measurements on MRI images. Though some CCI neurosurgeons have their own adaptations of these standards.

 

[Hip]

I found a doctor from Italy who does prolotherapy, so I had an assessment and a therapy 4,5 days ago. Immediately the day after therapy I felt better, my fatique lifted a lot and my mood was better. It lasted for a few days, just as the doctor told me will. Now I am back to where I was before the therapy, which he also told me will happen. The first sustainable results are expected to happen after at least 3 weeks if the prolotherapy works for me (for some people it doesn't work). Some people experience improvements after a few sessions. Sessions are done every 3 to 4 weeks.

Very interesting, we look forward to your updates as you do further prolotherapy sessions.

It would be great if you could fill out my CCI survey when you have completed your prolotherapy. At least one ME/CFS patient in that survey moved from moderate ME/CFS to remission as a result of prolotherapy alone.

 

[Osaca]

Several factors can cause craniocervical instability and related spinal conditions, with EDC being just one of these factors. You might like the MEpedia article on CCI which provides details. PR also has a CCI sub-forum where there is a lot of information.

I don't doubt CCI (or some of the other conditions) as a research field in its own right. I'm sure there's many briliant minds working on it. I'm just not aware of published research directly connecting it to ME/CFS, or research on surgeries improving ME/CFS symptoms, as generally it seems to cause symptoms quite different from ME/CFS (of course there's a handful of very famous anecdotes, but I haven't seen much research on it apart from the Bragee paper which is very controversial in its own right). Maybe, that'll change if the Polybio project looking at CCI and related problems is successful. Perhaps I'm also just to ill informed on this whole different world of diseases, where I image you patients have to be their own experts as well.

Dr Gilete is one of the world famous CCI specialist neurosurgeons, but there are at least half a dozen others of equal renown.

Diagnosis of CCI is done according to internationally set standards, and involves skull and spinal measurements on MRI images. Though some CCI neurosurgeons have their own adaptations of these standards.

That is indeed at least slightly reassuring. In the back of my head I just remembered court cases with one of these experts, but I shouldn't say anything about this nor will I mention the name, as I really know nothing about it.

 

[Hip]

I'm just not too aware of published research directly connecting it to ME/CFS, as generally it seems to cause symptoms quite different from ME/CFS (of course there's a couple of very famous anecdotes, but I haven't seen much research on it).

There is some research by Björn Bragée from Sweden connecting spinal issues to ME/CFS, research which predates the stories of Jeff Wood and Jen Brea making major improvements from corrective surgery for CCI.


The symptoms caused by CCI — known as cervical medullary syndrome (CMS) symptoms — are similar to those of ME/CFS: there is overlap of symptoms. But the symptom sets are not identical.

If you look at the CCI survey form, you see the cervical medullary syndrome symptoms listed about half way down the page; and then further down, there are the ME/CFS symptoms listed.

ME/CFS patients with CCI will tend to have a few extra CMS symptoms in addition to their ME/CFS symptoms, which maybe distinguishes them from ME/CFS patients without CCI.

The survey result shows that about half of these ME/CFS patients with officially diagnosed CCI had their illness start after a viral infection, just like regular ME/CFS patients. And if you look at all the answers in the survey results, these ME/CFS patients with CCI look like regular ME/CFS patients.

 

[Rufous McKinney]

By investigating about craniocervical instability, I came across Caring Medical and dr. Hauser in Florida. He has lots of articles and youtube videos about CCI and ME symptoms.

I've been very interested in Dr. Hauser's work there at the clinic for some time now. I'd go there if I could.

I have never injured my neck, but experience alot of ligament laxity possibly attributed to long term post viral illnesses.

1) I think the correction for Neck Curvature sounds like an interesting treatment that might also help;

2)I've experienced intense nausea and vomiting; and hypothesize that ligament laxity has weakened my whole cervical area and bouts of severe nausea perhaps literally "gave me" much worse Myalgic E.

What will happen when my neck is just so loose, my head falls off?

 

[JelenaS]

When the neck ligaments are loose, it is about milimeters, but milimeters slippage of vertebrae is enough to create pressure on the nerves and block the blood flow creating symptoms. I don’t have heavy head feeling (or maybe during these 9 years I got used to it so it became normal for me) or loss of conciousness which comes with severe ligament dammage. I have fatique, weak muscles, different pains in my body, nausea, vomiting, cognitive and mood disturbances, hairloss, digestive issues, severe headaches at the bottom of my scull, muscle spasms in my neck and upper torso, urinating like crazy and being thirsty the same, had insomnia, loss of apetite, tremors etc.

 

[Anjuska]

Dear JelenaS, i m from Croatia, diagnosed with AAI instability by dr. Gilete, neck pain, CFS, POTS, housebound. Went to dr. Cavalino, Udine, Italy, for prolothetapy, c2- c6, didin t help, i was one month bedbound after treatment and worse since then. Now i am waiting for AAI fusion in September, dr.Gilete in Barcelona, hoping for the best. Also doing PT for two years, didn t help, dry needling, manual therapy, did not help. Also, hEDS patient. Before this sudden crash i was runner, now i can barely walk.

 

[JelenaS]

Hello Anjuska, I am sorry prolotherapy didn’t help you. You also did it with Stephen Cavallino? How many treatments did you do? I did those Chinese cups therapy in the previous 6 months after which my condition also got severely worse, was bedbound for 3 months. It was never that bad during these 9 years. Now I am back to my old level of functioning.

 

[Anjuska]

Yes, with Stephen Cavallino, one time, and it was very bad, so he recommended neurosurgion and he said to me that this is not normal reaction to prolotherapy. Also i went to Mo Akmal - London, for prolotherapy c1-c6 , also epidural injection and steroid injections- didn t helt, i felt some relief from that epidural and steroids, but it did not last long. I decided to spare myself and go for fusion, becasuse nothing else is working for me.

 

[JelenaS]

:/ It’s a pitty. From my understanding, Stephen doesn’t know what ME CFS is, he thought I am having fibromyalgia. I met him in Greece where they had a conference, but other dr. from Texas called Sadeghi (National headache institute) did my C1-C2, other doctors, including Cavallino, didn’t want to do it as “it is very dangerous”. I wil continue prolotherapy, but only from C2. They told me even if I had problems between C1 and C2, it is unnecessary to do C1 as they are all connected. So, if I understood well, you did prolo only 2 times? Are you a smoker? From what I read, most people won’t notice any improvements before 3rd or 4th therapy. And also, there are PRP and stem cells. Surgery is a HUGE move. I don’t want to interfere with your decision, especially since you already have it scheduled, but maybe it could be helped without it.

 

[Anjuska]

I know that surgery is a huge move, but i am afraid that i don t have many options. I would like to go to Florida , to dr. Hauser, that is only option beside fusion. How was your prolo treatment? For me it was very painful, and also i have neurological issues, sleep apnea and seizure. Sometimes i can t feel my legs. I have AAi instability,
Atlas dislocation,
SOM-(superior odontoid migration)
Also protrusion C3-C6

I m not smoker, I was living very healthy, was a runner, one day i woke up and it all went wrong. Also had Covid seven months before crash.