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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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what are the chances of some sort of recovery???

C

cb2

Senior Member
Messages
384
@minkeygirl I am glad you found a way to tolerate famvir,I remember you were having some problems with it.

Wondering if I should start back slow or hit this last fever and flare hard with the famvir?
 
minkeygirl

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
cb2 said:
@minkeygirl I am glad you found a way to tolerate famvir,I remember you were having some problems with it.

Wondering if I should start back slow or hit this last fever and flare hard with the famvir?
Click to expand...

Yea if was a struggle but i couldn't tolerate valtrex and I wanted something "better" than acyclovir. I was really bad for awhile before it dawned on me that it felt like mono. That's when I decided to slam it. I think, looking back, I may have only been on 500 mgs.

But no kidding within a day my sore throat was gone, the crippling fatigue gone and I could keep my eyes open.

I can't advise you what to do. Slamming sure worked for me.
 
C

cb2

Senior Member
Messages
384
@crosser sleep is crucial! i hope you can find a way to get some even a few hours 3or 4 of deep sleep can help somewhat. sorry you are going through this. i hope some of the suggestions have helped. sometimes i take cordycep mushrooms, i can't tell if they help or not but i think they do.

@minkeygirl so you are at 1000mg a day? do you plan to stay there? i am glad they helped you so quickly.
 
minkeygirl

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@cb2 I'm currently at 1000 mgs. I tried upping to 1500 a few weeks ago but I didn't feel good. I suspect part of that could be because I just jumped up to the 1500 vs. going up 250 at a time and letting that dose settle. I may try again but right now I have other stuff going on making me feel like crap so I'm good. I haven't had a flare like that in over a year so it is absolutely helping me.

@crosser I can't read all this but cb2 mentioned sleep. I will not sleep without taking some kind of benzo. I have benzos i take to initiate sleep, anthistamines to sustain sleep and other stuff to layer. I just make sure I alternate so I don't develop tolerance.

As for suicide. I've been there and I don't think it helps to deny that we do think about it. Whenever I'm feeling really horrible, I can't help but go there. But I know it's usually something going on, and once I figure it out, I'm good to continue. What I found that helps me mentally, is to do something. Anything so that I don't feel like a victim to the disease.

I fight every day, try new stuff every day, search every day. And sometimes something takes. Right now I'm having luck with LDN. I had no relief the last time I tried it so this is huge.

Do something so you feel like you are in control.
 
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