• 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.

Pursuing treatment again

otherworldly

very severe
Messages
36
Even a GAPS doctor advised me to forget about diet for now, and just get calories however I can. So it's a real bind

wow, even a gaps dr......i'm so sorry. this is tuff stuff 4 sure i was taking the hcl even w/miniscule amounts of food w/no issues...perhaps u can still give it a whirl.....hugs
 

otherworldly

very severe
Messages
36
I am thinking about enzymes, though. I used to take Serapeptase, and wonder if that's a good choice now.. is ProOnezyme a better choice?

idk, its the 1st/only 1 i tried!

have u tried any h.pylori protocols such as mastic gum? just thinking out loud here......
i did gaps 4 ~3 yrs & it did nothing.
this really could just b a vagus nerve thing. damn vagus nerve!!!
 

KRR

Messages
56
Yes, I've been on the vagus nerve trail for a while now.. VanElzakker's work hits the spot for me.
haven't done anything for h pylori, don't seem to have those symptoms, once tried some mastic gum anyway but couldn't stomach it.
I will consider the betaine HCL now that you mention you didn't have a problem with it, thanks!
 

KRR

Messages
56
After reading the caveats about Equilibrant, and given my recent flareup, I decided to put it on hold. I've been having severe nerve pain that seems to originate around the scapula-clavicle joint, with some swelling there, and pain referring to neck, shoulder and upper back. Makes it difficult to find a position for sleep, or to move much at all without pain, even the weight of holding a coffee mug can be too painful.

I wonder if I'm switching to a more autoimmune/inflammatory phase. It did just occur to me that I have autoimmune disease in the family - my father had rheumatic fever as a child, and his mother had rheumatoid arthritis. Maybe that alone disqualifies me from Equilibrant.

I'm working with an herbalist/acupuncturist, and wondering if there are other types of herbal medicines that I should be cautious about. There's so much herbal medicine that's touted as immune enhancing, but by what mechanism, or whether there is an important distinction to be made between stimulating th1 or th2 with herbs, I don't know.
Any thoughts on this?

My high priority issue right now is dealing with the G-tube, and I can't imagine mustering the strength to also go running around to rheumatologists or other specialists to investigate this right now, at least to get some kind of meaningful diagnosis. Maybe in a couple of months. But meantime, I want to be working more with herbs and supplements.

I tried a proteolytic enzyme, Serraflazyme (serrapeptase) and got a lot of stomach upset, so that one is out.