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.
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sorry to hear thisI had been on oral contraceptives until I developed a Pulmonary Embolism; was put on blood thinners and Folic Acid, B6 and B12 (cyano-).
Within 3 months was mostly recovered from the PE.
Within 4 months started to struggle with fatigue, chronic unexplained pain, etc.
Took a few years to identify that I had B6 toxicity (which probably started when I started to get ill). And much longer to figure out I didn't tolerate Folic Acid and that my high B12 was probably un-usable for my system before I discovered Methylation and MTHFR defects.
I had an allergic reaction to two different brands of charcoal at a literal toothpick dose but I suspect this is only b/c I have MCAS and prior to this, I probably could have tolerated the charcoal. My husband and daughter take it with no problems.
How strange b/c I have insane med reactions to micro doses of things and Atarax is one of the best meds I have ever tried. I take 25 mg as a rescue med for MCAS (only a few times per month at present) and it helps me to breathe better and is one of the best meds I have ever tried (and I cannot tolerate Benadryl.) Am only posting b/c I wonder why and what this means.
I have never had a mainstream physician take the slightest interest in this issue. The first doc who ever looked at my SNP's from Genetic Genie and explained why I cannot process certain meds was my mold doctor.
Slysaint what helps you? I haven't seemed to tolerate conenzyme Q10 well in the past. and just about every amino acid has made me feel awful.This article sort of covers what I'm getting at
http://www.collective-evolution.com/2014/03/17/mitochondrial-diseases/
I had a bad reaction to erythromycin back in the 80's; you should also be wary of that whole macrolide group of anti-biotics.I did feel the erythomyocin hurt me way back in the day pre-cfs
Slysaint what helps you? I haven't seemed to tolerate conenzyme Q10 well in the past. and just about every amino acid has made me feel awful.
yes, same here.
how do you explain that?
i also found no explanation for not tolerating that 'healthy stuff'
Although it was not associated with disease onset, I think it is worth noting that statins can trigger a major exacerbation in ME.
Gingergrrl, Countrygirl and Hanna--sorry for what you all went through....
yea Gingergrrl I have had certain meds trigger intense feelings of hypertension pressure in head
I had a bad reaction to erythromycin back in the 80's; you should also be wary of that whole macrolide group of anti-biotics.
I don't know....wish I had a degree in bio chem or something....just sociology which only helps me understand the corruption of larger systems