Posted by kikkie2004 on
URL: https://www.es-forum.com/EMF-Sensitivity-Porphyria-tp2442216.html

Hi all

I by chance came across an article the other day saying that estrogen is be avoided in porphyria, as it makes it worse. My severe EMF problems started last year not long after I started on estrogen therapy, so I wondered what porphyria was (as it's about the only thing I haven't tested for on the lab's main test page).
So apparently there are different types of porphyrias and they're mostly genetic. Some of them make your skin extremely sensitive to sunlight because of porphyrincs in the skin, these can also damage your liver, others lead to muscle weakness, etc, and on googling, I found those people are also really sensitive to fluorescent lights.(And I'm guessing EMF generally, even if they don't all know it).

Then I found a book by a professor Steven Rochlitz, who asserts that porphyria is the root cause of CFS, MCS, ES etc, and is very much undiagnozed. According to him, it can also be triggered by infections, heavy metals, etc.  He says the routine tests for it are unreliable, you need DNA testing to see if you have one of the mutations causing the different types.

This is his book:

http://www.wellatlast.com/whatsnew.html

(I haven't bought it yet, but I'm planning on doing so).

This ia a summary of it:

http://www.thefreelibrary.com/Porphyria+Link+to+Environmental+Illness.-a0243290447

This is an Nexus article re, which I haven't bought either:

http://www.nexusmagazine.com/index.php?page=shop.product_details&flypage=flypage.tpl&product_id=1992&category_id=214&option=com_virtuemart&Itemid=44

Anyway, there's a site

 http://www.cpnhelp.org/

where the subscribers are treating chlamydia pneumonia (not the same as the SCD chlamadia T) as the cause of most cases of CFS, MS, etc.  They do this with pulsed antibiotics.  But apparently Cpn also causes secondary porphyria, which is worsened by killing it with antibiotics.  They treat this with glucose, high carb diets, activatged charcoal, increased b vits (especially b12) and Questran:

http://www.cpnhelp.org/secondaryporphyria

(These antibiotics would obviously also be addressing other infections such as Lyme, Rickettsia, mycoplasma, etc), and I guess the porphyria treatment also addressing other causes.

This is a discussion on their forum about EMF sensitivity, some have gotten over their's by this antibiotic and porphyria traetment:

http://www.cpnhelp.org/computers_emfs_cold_feet

Another , new treatment for porphyria is Tegamet (Cimetidine ):

http://www.theannals.com/cgi/content/abstract/31/3/365
http://www.ncbi.nlm.nih.gov/pubmed/8915698?dopt=Abstract

Here's a Facebook chat about people using it for porphyria and some reporting losing much sensitivity to the sun and to fluorescent lights:

http://www.facebook.com/topic.php?uid=2445760941&topic=11831