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Update. I started 3.0 mg today. My depression is bad, but it is probably just a coincidence since it has happened every spring for the last 4 years. On the other hand, the pain is still a whole lot better. I still have some, but it’s minor. I think my pain was fibro pain, and not ME pain...

I spend most of my day lying in my recliner, and I do sleep on it for 2-3 hours at a time. I’ve been doing this for 4 years. I’m on my second one. I never sleep or lay in my bed during the day. I like spending my time in my living room and my recliner is my best friend. I only use my bed at...

I’ve increased to 2.5 mg 3 days ago. It seems that every time I increase, I get a « high » for a few days, then it stops. Like today, I sort of feel better even if I had some blood drawn twice. It hasn’t lasted for now, but it’s still very early so I can’t help but still hope this will give...

It’s about 1.3 million USD. I think it’s a start, I’d rather have that amount than zero. And maybe once they’ve built teams and started doing the work for a while they’ll want to keep it going and ask for more funding. One can dream.

Now that you mention it, I get a lot of hot flashes but don’t find I sweat a lot from them. So I would agree I don’t sweat as much as I used to.

@Silvermachine nice statistics ! It’s too early for me but it seems to be helping. Increasing to 2 mg 2 days ago gave me a cognitive boost.

I just increased to 2 mg, so far so good. But it doesn’t seem to be working anymore at all at the moment, lol ! It didn’t last. I have too much on my plate at the moment and it’s payback time...

Oh that’s true, you’re not close to Quebec. Maybe they can send it to you by Post Canada or send it to a specific Pharmacy near you ? Anyways, I’ll ask, just in case. Have you looked into online Pharmacies in Canada ?

Thank you, I’ll remember it !

@Alvin I’m sure it doesn’t cost 300$ here because the provincial coverage only covers 70% or 80%. At 80% it would be 30$ if not covered. Maybe try phoning a pharmacy from Quebec ? I can ask my pharmacist if he’ll honor a prescription from Ontario if you want.

It took me 3 years to get it. I finally found an infectious disease specialist who agreed to prescribe it to me. Don’t give up. The best thing is it’s covered by medicare here and costing a big... 6$/month !

Yes, I am dissolving 1x50 mg tablet in 50 ml of demineralized water (couldn’t find distilled) and thus getting 1,0mg / ml. I’ve heard other people say they quit because it wasn’t doing anything but then realized it was working when stopping. Glad it’s working for you too !

I changed my mattress for this exact reason in 2008, then gace this mattress to my son in 2013 and got a new one. I returned 2 that gave me back pain and kept the third one, which is the one I have now. I make sure to rotate it every couple months and it’s not that old. I guess it’s always a...

Merged thread LDN seems to be working I started LDN about 5-6 weeks ago. I started slow, had to go down because of constant headaches and now I’m at 1.5 mg every morning. My plan is to go up to about 3.5 to 4.5 mg or whatever works. When I reached about 1.0 mg I started being more exhausted...

Exactly my thought. Or, as @Hip said, chronic stress causes weakening of the immune system, then viral infections happen, you can’t fight back and ME sets in. @Andy thanks a lot, that’s exactly it !

Thank you ! Hopefully the rheumatologist I will see knows what he is doing.

@Ryan31337 thank you for your response ! I had to check what all those meant in your list. I definitely check box no 1 (at least 4/5) and don’t think I have any of the other ones. About elevated CRP, I don’t know. When you say my symptoms sound like inflammatory back pain, is that a form...

Like I said, he gave giving birth and a car crash as examples.

I have fibro on top of ME and some type of fibro pain. I also have pelvis lower back pain that started about 8-10 years ago, before ME. The pain happens during my sleep, very early morning, around 4-5 am. At the beginning it wasn’t too bad but now it is bad enough to wake me up. It comes and...

In a recently released OMF video (sorry, I don’t have it at hand at the moment) featuring Ron Davis, Ron says that ME can be caused by stressful events, such as giving birth, a car crash, or other stressful situations. He also talks about it being caused by EBV and mono and other viral...