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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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XIFAXAN

perrier

Senior Member
Messages
1,254
Hi Folks: go on www. rxlist.com and read up about xifaximin. If you have loose stools they recommend stopping the drug and notifying the doctor. There were 6 pages of information on that website.

I am also scheduled to take this and have purchased it. But now I am a bit worried about when to start.
Best regards, Helene
 

Whit

Senior Member
Messages
399
Location
Bay Area
I took Xifaxin, or actually I believe it was rifaximin or a generic, can't remember how I got a generic but I don't remember it being difficult. It didn't do anything good or bad. Just another round of useless antibiotics.

I've heard of people getting better from it though, and bacterial overgrowth (SIBO) can cause very similar symptoms to CFS so if you have any gut issues along with the usual CFS symptoms, its' definitely worth looking into I think. I bet there are quite a few people who think they have CFS but just have an undiagnosed fatigue causing illness.
 

Daffodil

Senior Member
Messages
5,875
global....could you please tell me about this pancreatic enzyme thing? i am not sure which one to order...


thank you
 

globalpilot

Senior Member
Messages
626
Location
Ontario
Do you see the one that costs $466 ? It is that one.
Let me know if you find it and if not I'll go to the site and look it up.

global....could you please tell me about this pancreatic enzyme thing? i am not sure which one to order...


thank you
 

Daffodil

Senior Member
Messages
5,875
global.....yes ok i think i know which one. i guess i will order the complete profile too on the off chance they will find something, which they never do!


thanks a lot
xoxoxo
 

globalpilot

Senior Member
Messages
626
Location
Ontario
I know how you feel. :)
Let's compare results if you like.
One nice thing about directlabs is they send you the resutls electronically so you don't have to wait long.
 

Daffodil

Senior Member
Messages
5,875
thanks global:) feeling very disheartened today. am sending blood off tomorrow for nagalase testing..but its in the afternoon and i feel awful so i am not sure i can fast for the test. have you had this tested? i cannot remember if you are on gcmaf....

xoxoxo
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,097
Location
australia (brisbane)
I'm not sure what this has to do with mythical mouse viruses though....

They say the longer you have cfs the more infections you potentially have, so killing possible infections in the gut or elsewhere can help free up the immune system to fight the mythical mouse virus or other infections one might have.

cheers!!!
 

globalpilot

Senior Member
Messages
626
Location
Ontario
I have had nagalase tested. It was 1.9 the 2nd time, 2.1 the first. I"m not on GCMAF . It's on the radar but I'm trying some other things first.
 

Daffodil

Senior Member
Messages
5,875
thanks all. i have decided not to spent the $500 on the stool test right now. i am just so sick of spending all this money and getting nowhere. even if they find some bacteria, the abx and improvement would only be temporary. i'm also not doing the NK cell function test...i think the nurse at dr. enlander's office said i am supposed to do it every other month or something...but its another $400 for me. i think i will just try to fast and do the nagalase.

i have a $4000 quest bill i dont know how i am going to pay!
 

Daffodil

Senior Member
Messages
5,875
hi all. i am doing very badly right now, due to xifaxan.

i think it helped me a little the last time i took it for 10 days at a low dose. at first, it made me worse. then, 10 days after i stopped it, i had a pretty good week. i told my doctor, who decided i should take a higher dose and for a longer period of time.

this was a huge mistake. i am insanely worse now, with chest pain, worse head swelling, body aching, just horrible. its been over 2 weeks since i stopped the xifaxan.

wonder how long this bad period will last. all i can think about is death.