Searching for years, not giving up !
Hello all! Im Wanda and Im an advocate for my hubby, who went from perfect health to progressive decline starting 2003, we have been married 27 years and still adding on. 3 kids (2 grown) 1 dog, 2 cats.
Im learning how to navigate this site and post, so please forgive me as I learn. Im not sure if I will find hope here, any input is appreciated!
2003 he started with flu like illness extreme fatigue few small bite? on chest, fever, which developed in to what appeared to be hives? Doctor said hive, stress...xanax!, prednisone does pack...Prednisone did nothing, Next doc drew blood for lymes etc. put hubby on Doxyi for 10 days...
Rash around bite area spread across chest spotty irreg shape raised edges moved up to scalp, face, painful fevered areas with no hair loss. Doc said boarder line Ericholsis but still felt it was anxiety, hives, more prednisone does pack, xanax, rest etc.
Rash started to follow pattern, cycling every 12 days aprox, severe fatigue, fevers at night, rashing continuing to spread downward to arms, painful skin and generalized pain as if flu. Went to rheumatologist he had no answers, Dermatologist scratching head ? Discoid lupus?, Medical doc scratching head anxiety, stress more xanax.
Center for disease control tested again for Ericholosis test not conclusive. We went to infectious disease doc, Baronella (cat scratch disease) more antibioticsi and prenisone, condition continued to cycle exactly as it had been with rash continuing to spread slowly down body and becoming more angry, pain spread, skin and generalized body, ended up on Doxy. 100 mg twice daily and prednisone tapered to 10 mg daily for aprox year during year he had periods when he tried to return to work but relapsed many times 2005.
2006 Infectious disease said I dont know sent he back to med doc. who ask me what do you want me to do next (I a nurse) he said its out of capabilities to treat. I ask him to send us to Duke Hosp.
2007 several doctors saw us at one time, looked at rash over most of body, sent him for biopsy of inflamed ears which dermatologist was certain it was relapsing polychondritis and sent us home. We went back 5 hour drive and on this visit Doc said biopsy was not conclusive but I think its still relapsing polychondritis and started him on methotrexate inj. with prednisone.
2008 filed for disability, rashes remission, pain, severe fatigue cant get out of bed till lunch moving slow, resp. symptoms, sinus problemsi continiously, rash resumed after aprox 5 months. Bad reaction to Arave.
I told doc last week about this site and that I have felt all along it has been an invasion by a parasite of some sort because of the cycling as if it is a life cycle of an organism of some sort. He scatched head and put him back on Doxy for 30days and said lets see if this helps if it does we will try infectious disease again?
His mom passed at 62 with a very slow progressive MS.
Do any of you think Im on the right track....Ive been searching for years now...cant stand to see him in pain, cant give up...
Sorry for this long post!