• 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 register, simply click the Register button at the top right.

Sensitivity to Meds -- What disease should I be tested for?

joejack102

Senior Member
Messages
133
My primary symptom used to be EXTREME sensitivity to meds and herbs. 1,000x's sensitivity. Started at 13 years old. I'm 31 now. I've never really had any other major symptoms.

For those that are also sensitive to meds... What is the ROOT disorder/cause that you have that I should test for? And what tests would get at the root cause of what disease/condition would cause this?

I've been working with one of the top neurologist at a major medical center here. He has access to potentially order any test that exist. However, what test should I request him to order?
 

RWP (Rest without Peace)

Senior Member
Messages
209
@joejack102,

Sorry to hear about that. As you might imagine, I can think of many possible options. A friend here at PR just recently sent me some info on porphyria. Here are the links:

http://truemedicine.com.au/wp-content/uploads/1801porphyria
http://www.porphyriafoundation.com/about-porphyria

It can result in that outcome. Do you have allergies or MCS?

If you go to my Profile page on my avatar, you can find a link to a chapter from a book about my and my wife's (PWR (Peace without Rest) 30-year illness. Her MCS (including sensitivity to herbs, medications) got dramatically better (occurs later in the book). I can give you details later.

RWP + PWR
 

joejack102

Senior Member
Messages
133
Well the only allergies I know of were what they call “seasonal allergies” even though I had to take antihistamines all year long.

Then I used different types of Choline supplements (CDP Choline and Choline Bitartrate) that excessive use permanently made my sensitivities to meds/herbs go away ever since. It also caused my allergies to disappear.

Can you explain more about what helped your wife and her situation?
 

RWP (Rest without Peace)

Senior Member
Messages
209
Well the only allergies I know of were what they call “seasonal allergies” even though I had to take antihistamines all year long.

Then I used different types of Choline supplements (CDP Choline and Choline Bitartrate) that excessive use permanently made my sensitivities to meds/herbs go away ever since. It also caused my allergies to disappear.

Can you explain more about what helped your wife and her situation?

OK, it was a professional-grade herbal antiparasitic treatment (OTC). I am sending you more info by PM.

RWP
 
Messages
48
Location
Ohio
anti parasitic, eh? My son and I tend to have increase of symptoms 3 days prior to the new and full moon...when parasites come out of hiding to reproduce. Had you noticed a similar pattern? What caused you to go the parasite route?
 

RWP (Rest without Peace)

Senior Member
Messages
209
@Awags1986

Yes, before we began treatment 22 years ago, we were aware of that phenomenon.

The reason for that route was that my wife, @PWR (Peace without Rest), was diagnosed 22 years ago with ovarian cancer. As one of the most severe MCS and EMF patients we've heard about, she could not do conventional treatment. The antiparasitic treatment was the only, and actually the best possible, treatment open to her. The beginning of the story (laying the foundation of ME, MCS & EMF) is found on my profile page (Chapter 1). Feel free to read that, and if you'd like the rest of the book, I can tell you how to proceed.

RWP + PWR
 

RWP (Rest without Peace)

Senior Member
Messages
209
Interesting thought to look into. I am related to someone in the "Famous Porphyria Sufferers" section, but the other link says there is no treatment at all. :( If there is no treatment, it is just wasted energy to research IMO...

@Strawberry

Well, as you know, there are typically 2 camps; one says that nothing can be done and the other does. In our case, we have found great help here at PR with the MTHFR protocol, something that one camp might poo-poo. So we are desperate enough to find and do anything that could help, even if it's small. That's because those small things can add up and lead to bigger answers.

RWP + PWR