Looking for information on an old experimental treatment for Fibromyalgia / CFS

[Skye2313]

I hope this is allowed here, I picked this forum vs the Alternative Treatment one for wider views in the hope I can get my questions answered.

I'm 43 and I've had Fibromyalgia since I was around 15, in other words I've had it for so long that I remember when it was classified as a mental disorder. Along the way I've also been diagnosed with Epstein Barr Syndrome, Chronic Fatigue Syndrome (but never Lyme disease) and a few of the other related disorders that were common back in the day. My original double diagnosis (Fibro / CFS) came from the head of infectious disease specialists at A.I. DuPont Institute for Children.

At some point when I was still under 18 my parents made me undergo what was then an experimental therapy at a clinic in Desert Hot Springs California. This took place in 1990. I remember staying for 2 weeks at a hotel in the town and Depeche Mode's Enjoy the Silence was THE song on MTV at the time, played pretty much every hour. The hotel was one of the older ones that had pools and such that used the local hot springs waters for "health". The clinic was somewhere nearby in town and had a multi disciplinary approach where they did some bio feedback, TENS therapy (which I hated), nutritional counseling, massage therapy etc. However the major treatment being offered involved them trying to "kill" the disease by forcing your immune system into overdrive by injecting you regularly with what I believe were cold / flu viruses, I'm not sure if they were supposed to be live, dead or weakened. Since I was under 18 I wasn't given a good explanation of the process and I didn't have the legal right to request more information. I remember the injections were daily or near-daily during the 2 weeks I spent there and then I think they were weekly and then at various intervals afterwards. At some point I was so sick from the treatment that I chained myself to a banister at my parents house and refused to go get that week's injection and caused such a fuss that they were forced to finally stop. And yes I mean chained, with a padlock etc - I was that desperate to stop the treatments. Teenage females can be a bit dramatic My parents have declined over the years to give me any information regarding exactly what the treatment involved etc and I was so sick with brain fog etc back then that I only remember a few details. The doctor administering the treatment was an older white male, but I only saw him once or twice.

If anybody remembers this clinic, or this therapy and can give me any information about what exactly it involved and what the end results were I'd be extremely grateful. I do remember being told at the time that 1/3 of patients got better, 1/3 of patients stayed the same and 1/3 of patients got and stayed worse. You can guess which 1/3rd I'm in. I don't fault my parents for trying, but any time I try to raise the topic they claim they don't remember any details or have any of the old information regarding the treatment. I would like to know more then I do about what the therapy involved and what effect it might have had on my current health. Google searches have come up inconclusive so I'm hoping that someone else who has had the condition for as long as I have will have heard of it, or undergone it also and has more information then I do. Thank you.

 

[diamond]

Oh My this sounds terrible what an awful experience im surprised you havent got some kind of PTSD after being so scared and forced to have a treatment like that.

I cant help you but my heart goes out to you as being ill is bad enough without some crazy kind of therapy.

I once saw a clinic in the US when i first got unwell that spun a good story on the internet about some amazing chiro type treatment on the neck that's was thousands of $$$'s and people miraculously went from wheelchair bound to walking easily and they had past 'patients' working now as 'advisors'.

I even got as far as phoning from the UK and speaking to one of these people with their persuasive stories..luckily i smelt a rat and didnt go through with it and later discovered the 'Doctor' had been prosecuted for fraud..the clinic shut down and it was all mumbo jumbo money making.

Good luck maybe someone here will be able to help you.

 

[Tipnatee N]

Wow! I believe that you might be able to get your info faster if you post your story on YouTube video , I think someone somewhere might be able give you more information of this place where about or what happen to them now. Who knows this might get puplic attention as crazy as this may sound.

 

[Skye2313]

While its an idea, I'd rather not. I hold no ill will towards the Doctor, who I believe was sincere, or my parents who were trying their best at a time when even less was understood about the disease and possible treatments then it is now. Considering how little is known now, you can imagine...

I'm hoping to find out more data about the treatment so I can assess what lasting impact it may have had on my health and if other people who received it have had a higher rate of anything in particular. The basic concept was to force the immune system into hyperdrive to cause it to kill the disease. On some level it works, to this day any time I get any sort of injection, of any kind I have an immediate immune system response and the injection site swells up, gets hot to the touch and stays that way for 2-3 days. It doesn't matter what the injection is. I've been on injectable birth control for 21 plus years and I still have to pop a benadryl to lessen allergic reaction. Ditto any time I get a vaccine, in fact for decades they wouldn't let me get vaccines - I went to college with a waiver for most of them. I only started getting the flu shot about a decade ago when my doctor finally deemed it "safe" for me.

Even if it was a different clinic or doctor, if anybody remembers a treatment using injections of cold and flu viruses to stimulate the immune system to try and cure fibromyalgia I'd be interested in hearing about it. Its possible the same approach was used at multiple locations.