• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Confused and don't even know where to start

S

shicky

Messages
8
Hi all,

my wife has been ill for around 8 years, fortunately not bedbound but is at 50% capacity most days. We worked through the roadmap a while back and I think we've ticked off most things. My most recent attempts were getting her to try and correct gut issues based on uBiome results but I don't think we're seeing much of an improvement.

I'm happy to throw money at the problem, but we don't have unlimited resources, if we take a major shot with KDM for example and it doesn't work, we're going to be stalled for years. I just don't know the best route to take? I feel like we're still pretty lucky compared to most stricken with the illness but her general health seems to indicate to me she could get better.

I've been reading into Dr Weir recently but it just seems like he goes for anti-virals if at all? In which case do you need to blow 300 on a consultation? Is there not some anti-virals we could try or work through?

Regards,

Nick
 
S

shicky

Messages
8
taniaaust1 said:
wish there was an easy answer but there unfortunately isnt. Even with the anti virals, people with this many need different ones depending on what coexisting infections which are found. It isnt something really you can just get and start playing about with.
Click to expand...

Is there a way to tell whether you'd be a suitable candidate for this approach? Also does anyone have contact details for Dr Weir, I found a hotmail address which has me skeptical..
 
caledonia

caledonia

Senior Member
Messages
4,610
Location
Where the land is hilly and they eat hot chili
It's really easy to make ourselves much worse.

50% is not that bad in the scheme of things with this disease.

How do you know she would be a candidate for antivirals?

There have been so many people who have spent all their savings on treatment and not gotten better, or have even gotten worse. And then they're poor on top of it.

I guess I'm advising much caution.

In addition, the Open Medicine Foundation is working on the cause, testing and treatment as rapidly as they can. It's the best situation for research I've seen for this disease ever. So there is hope there too.
 
You must log in or register to reply here.