Activated charcoal and book by Dr Steven Rochliltz
I have had CFS since the age of 10, and got dianosed in 2004 with Rickettsia, Mycoplasma and CPN by Dr Jardin.
Did her antibiotic prococol for a few months, which consisted of doing one week a month of high dose antibiotics (mainly tetracyclines, but also macrolides etc). Had severe die-off reactions during every pulse, then started feeling better again towards the end of the week, and then relapsed again over the next three weeks until it was time for the next pulse.
After a few months of this, not feeling I was getting any better and financial constraints, I abandoned the protocol and attempted various other things to get rid of CFS (which I didn't).
Last year I became extremely sensitive to EMF and eventually started exploring the link between that and porphyria (as I read some forms makes you really sun-sensitive (which I am as well) , which led me to your site:
I have since about the 3rd of Feb restarted on CAP - did two weeks on doxyclycline and since I didn't have a big herx, I added azithromycin as of yesterday (had some nausea in the morning, but otherwise it went OK - will do the next dose now on Monday).
I've also been taking cimetidine (tagamet) to counter-act secondary porth (although I wonder whether in my case I wonder if I don't have the primary form as well due to family displaying a lof of porph symptoms without seemingly having Cpn). I've also started taking glucose before meals.
Anyway, two reasons why I'm posting:
1) Firstly re activated charcoal: I've read some other women posting that said she had 'skin issues' from it. I think it's giving me skin issues as well (as well as fatigue) , to me it feels like it actualy makes the porph worse. So on googling I found this:
(side-effects of activated charcoal, stating it makes variegate (an inherited form) porphyria worse.http://doublecheckmd.com/DrugDetail.do;jsessionid=044CA76AD51E74D84DCEF…
Following is another link stating two people getting better wtih activated charcoal, but one initially doing better and then having the disease agrivated:
I'm sure there's lots more, if you google 'activated charcoal porphyria' (especially 'variegate porphyria) it should bring up more hits.
Anyway, so it might be helpful for some, but might actually be risky and make some worse.
The second reason I'm posting is that I came across a book by an author called Prof Steven Rochlitz. He's written a book called
PORPHYRIA:The Ultimate Cause of Common, Chronic, & Environmental Illnesse
to be found here: http://www.wellatlast.com/whatsnew.html
where he says that porphyria isn't the rare genetic illness that it is said to be, but is actually rather common. And that it can be triggered by infection (as you all know) :), stress, toxic exposure, etc, and then goes on to cause CFS, MCS, MS , ES, etc.
I've ordered the book and it's en route so haven't read it yet , but I did buy his Nexus article re:
and it was like light bulb going on in my head, it's like the article was written about me. It described all of my symptoms of fatigue, muscle weakness, reactive hypoglycemia, hormonal havoc, etc. The article goes somewhat into supplements, etc, but the book apparently goes more deeply into that, as well as diet etc.
Anyway, I thought I'd write re all.