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Update after 5 weeks on Disulfiram : there seems to be something happening, but it could be either good or bad. I still have most of my symptoms, except I haven’t slept during the day for two weeks. (I do have side effects though and I’ve had to lower my dose). I also have been able to do...

i don’t have the information on hand but I can ask next time I see my doctor (it will be after the holidays). The trial is for Lyme. I doubt that it’s the same one. I think mine is a small local study.

I’ve tried LDN for about 5 months. I suspect it was making me lose my hair, so I stopped. I might decide to start it again in the future, as it was helping with fibro pain.

My doctor says he’s having good results so far. He started using it on his patients about six months ago. I’m part of a research trial, I don’t know if it will be published. Because I have GAD, I have decided not to read anymore on the subject, for fear it will trigger so much anxiety that I...

I’ve recently started a treatment with Disulfiram. My doctor thinks there is a possibility that I have Lyme and put me on antibiotics. After reading a lot about it, I’ve decided I didn’t want to go that route. Meanwhile, I learned about a new Lyme treatment with Disulfiram that was supposedly...

I found no scale that takes care of all angles. I’m also often in-between categories. So for myself and others, when I educate about the illness, I have simplified it. I explain that mildly affected people are the ones who can work, even if all they do besides work is sleep, moderately...

It’s working out really well. I don’t have balance problems, so I try to climb up the stairs as much as possible, to try and maintain a little muscle. But when I have trouble walking because of weakness, it’s really nice to have it to rely on.

Mine is second hand. It was 500$ or 700$ cheaper, and they really did a good cleaning job and changed the parts that needed to be. You can’t tell I didn’t buy it new.

Thank you ! :-)

We can’t read if not subscribers and already read our quota. Can you cut and paste the article in a comment ?

Yes, it really is ! . I do have acid reflux but I don’t think it’s related to it. I’d be really surprised if it was. No, it’s not something I feel in my lungs. It’s rather a feeling of doom, like I was trapped in a very small area, with very little ventilation. A sensation that my brain is...

For those who live in countries with harsh winters, do you find yourself being worse in winter? Fall is coming soon and when I can’t open the windows, I feel like I am lacking air and my general malaise increases. It’s a weird feeling, I can breathe fine (except when out of breath) but I sort...

Survey answered, thank you !

There was no choice for it but I’ve had permanent tinnitus for more than 10 years. It never, ever goes away. When my symptoms increase, it gets worse : I get louder bass type sound in one or both ears. When it happens I sleep with a white noise machine on.

This is the absolute truth, and this is what we should remember. I don’t understand why people keep stepping on someone’s who’s already down...

Well, I know for a fact the College was after him for many, many years. About the complaint, his fee was 200$/hour. It’s no secret, it was on his website. That’s what he charged for his time. I’m not going to speculate what happened.

I haven’t read all the comments and I’m not going to. I am very sad at the way Dr Hyde’s career is ending. He has helped many, many people get diagnosis and receive insurance benefits. Often without even charging them a dime. He went out of his way to help patients, even from other...

I have donated a bit but my contribution is mainly from participating in ME/CFS studies. I go out of my way to try and do as many as I can. In the hope it will help us all one day.

Ha Ha Ha ! Indeed...

It’s a shame really. I found this interesting article. I would very much like to try the meds they are talking about. I seem to ft well with the ME patient they describe : https://www.nytimes.com/1995/09/27/us/study-ties-chronic-fatigue-syndrome-abnormality-control-blood-pressure.html