Pls help.... I took doxy and palquenil and had a bizarre horrible photo reaction in June.... Truly my whole body lit up as white light ( and I could see it !!) ... Burnt for months and laid in an absolute dark room for months ..... Now crawling out in 40 watt lit basement.... PROBLEM is the CNS Lyme symptoms are back.....so I just took 3 days of Cedax and poof CNS much better BUT phototox is worse!!!! Back to abject darkness.....I cant be treated???!! SCARED .... Any suggestions??? Seems I can't take any antibiotics due to phototox reaction..... Pls help!!! P (ps been to 25+ MDs and not the first one even believes I have any type of adverse health condition....of course I look pretty weird on my opaque frog suit and leather hat and gloves!! So much for objective vs subjective thinking!! Jerks.... They have treated me A's non-human)
Posted by map1131 (Member # 2022) on :
I believe you are looking for info on porphyria.
If you use the search button above you will find hundreds of post about this going back many years.
Keebler seems to be the porphyria expert. Actually Keebler is the expert on many lyme & co topics. She always has urls for extensive reading.
Pam
Posted by Lymetoo (Member # 743) on :
Have you considered trying a Rife machine for the Lyme? (I guess you have Lyme?)
Do you have other coinfections?
Posted by Cx=waspsting (Member # 37685) on :
Porphyria tests neg - I even repeated them three times b/c realized poor sample handling/lab errors in first two..... Porphyria specialist says .... Not porphyria.....help me someone pls God some window must open after all these doors keep closing shut?!?! P
Posted by map1131 (Member # 2022) on :
Come to our next lyme support meeting and I will lend you my rife book called "When Antibiotics Fail...Lyme Disease and Rife Machines".
At our last support meeting we decided to start a library of Lyme books. All of us have so many to share with others.
One must open their heart and mind to all the possiblities that are out there.
Pam
Posted by sparkle7 (Member # 10397) on :
There are herbal alternatives. Maybe try them? Stephen Buhner has a good book on herbal treatent of Lyme. Dr. Cowden, Dr. Klinghardt & Dr. Yang also treat with alternative therapies. There's alot of info here & on the internet if you do some searches.
You may also want to look into the Marshall Protocol...? They actually avoid light as a means of getting well. I don't know too much about it since I never tried it but some people do well with it.