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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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Whats FINALLY worked for me.

Messages
8
Hiya fellow searchers! I'm continuing to do well on this protocol, although I get frustrated at the slow improvement sometimes. I can walk a couple blocks fairly easily now, and stand for 10-20 minutes, and do more mild activities (going to the movies or lunch, e.g) than I used to. I find myself doing more little things around the house, too, like dishes or laundry. There's days now when I don't need a nap, but I still lay down an hour just for the rest. I still have one or sometimes two "bad days" a week, where I don't get dressed or shower, but I'm now at least out of bed even on a bad day. I have hopes of starting some mild weight-lifting but I think that may be too much yet; I get profuse allover body sweats when I push things.

My big triumph was to recently go to a concert at a local club. I walked across the parking lot, and "danced" in my seat for two hours, and had a couple drinks like a regular person!! I didn't drive myself, or go to dinner first, etc. and I was damn tired after, but just to enjoy myself and wave my arms around was so much more than I thought I'd ever do again!

Thanks everyone for Naltrexone and Arteminisin clarifications; sometimes I'm a bit glib in my desire to be accessible. Dr. Gonzales turned to naturopathy in response to his Lyme patients, and he specializes in that more than CFS. He does think I have it, but my tests have been borderline, and I think he has "Lyme-colored-glasses". Since the treatment is pretty much the same I don't care.

Someone asked why I think i have leaky gut. I did a blood-sample based allergy test (to food, molds, fauna, etc) and I was pegged as being allergic to like 20 foods, all of which I had eaten in the days before the test. The one food I'm actually allergic to, shellfish, was buried in the "slightly allergic" list. I just recently redid the test hoping that my gut was better, but nope; another 20ish foods, all eaten recently, mostly different than the first test. *sigh*. I tried to get a local Dr. to agree to do a fecal transplant, but no dice. ( I've already had all the lower/upper G.I. stuff done.). I should probably quit coffee but I caaaaaannnnnn'ttttt.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Correct, the i.v. form is Artusinate.
Hi,

It's artesunate for the IVs. I get it in combination with high dose vitamin C once a week in the Seattle area.

My doctor also has me doing BioPure Nexus artemesinin suppositories, made with garlic and cocoa butter! The idea is to get it into the liver faster, whenever thinks one of my bugs is. Very interesting stuff.