• 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 (FM), 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.

HealClick ME/CFS Treatment Project...

dannybex

Senior Member
Messages
3,555
Location
Seattle
I thought folks might be interested in knowing that the patient-run Healclick site is getting ready to assess four different treatment protocols:

Environmental Avoidance, the Paleo Diet, Nasal Spray for Mycotoxins, and the Simplified Methylation protocol.

If you're interested in participating in any of these, they've made it really quite easy, and the results gathered will be completely anonymous. Here's a link for more information:

http://blog.healclick.com/mecfs/mecfs-treatment-project-announcement

(I'm going to start the Nasal Mycotoxin Spray -- based primarily on Dr. Joseph Brewer's protocol -- in about 3 weeks. Still waiting for the test kit, which doc says should arrive next week.)
 
Last edited:

Dreambirdie

work in progress
Messages
5,569
Location
N. California
(I'm going to start the Nasal Mycotoxin Spray -- based primarily on Dr. Joseph Brewer's protocol -- in about 3 weeks. Still waiting for the test kit, which doc says should arrive next week.)

Great to hear you've pulled together the funds for the mycotoxin test. :thumbsup:
I will be interested to see how revealing that is.
 
Last edited:

dannybex

Senior Member
Messages
3,555
Location
Seattle
Definitely. I just had a really bad night, and day -- one with symptoms similar to 12 years ago!!! -- so I'm frustrated, and just worried I won't last that long. But I'm sure I will…as I felt that way 12 years ago. :)
 

Skyline

Senior Member
Messages
140
Location
Bangkok, Thailand
Is there a nasal test you can do to detect if you have mycotoxins in the sinuses before starting such a protocol?

I haven't been able to find it.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Wow. Amphotericin. Just the idea of it scares me! I do understand that topical application is unlikely to cause problems. Nonetheless, I'd be cautious about using this medication if you are sensitive to medications in general. IV infusions are known to cause severe side effects, like multiple organ failure. Medical school nickname for it is "amphoterrible." Now I don't want to be one to promote unwarranted fear mongering, I may be totally off the mark about this protocol. I just think amphotericin should be approached with caution, especially in a group known for its senstivitity to medication side effects.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I'm the opposite Valentinelynx, when I tried all sorts of antifungal treatments in the 1980's and 90's the one that really did help was Amphotericin B and I didn't get any unpleasant side effects that I got from the others. My GP did tests for liver damage. Being sensitive to meds means that I remember the ones that I could tolerate fondly.

When I saw it was being used in a nasal spray (and I'm been fighting chronic sinus problems for over 20 years now) I would jump at the chance to get my hands on that spray. No idea if the reason behind my sinus problems but I would like to stop having to keep washing them out with the irrigatior and also having to take antibiotics when that doesn't work and I get another infection. I've tried other antifungals in the irrigatior. Haven't seen Amphotericin for a decade or more and the mouth lozenges were discontinued.
 

dannybex

Senior Member
Messages
3,555
Location
Seattle
Wow. Amphotericin. Just the idea of it scares me! I do understand that topical application is unlikely to cause problems. Nonetheless, I'd be cautious about using this medication if you are sensitive to medications in general. IV infusions are known to cause severe side effects, like multiple organ failure. Medical school nickname for it is "amphoterrible." Now I don't want to be one to promote unwarranted fear mongering, I may be totally off the mark about this protocol. I just think amphotericin should be approached with caution, especially in a group known for its senstivitity to medication side effects.

Infusions may be the reason why it got that nickname. This protocol, used by Dr. Irene Grant for years, and now Dr. Brewer, uses a nasal delivery system. More on this thread:

http://forums.phoenixrising.me/inde...-mycotoxins-in-patients-with-cfs.22743/page-8