Jacque
Senior Member
- Messages
- 424
- Location
- USA - California
I truly love this site... Soooo many WONDERFUL and SMART people here... I am currently on Rituxan and Dr. Kogelnik is my doctor (lucky me).
Many of you are very intelligent and analytical so wanted to bounce this off of you...
As I sit here pondering why I had 5 days of GREAT energy and now slammed back on couch...my mind is filled with all kinds of questions...
My eyeballs literally start going in circles like that snake on Jungle Book when I try to unravel WHAT the FRIGGGG is makin me so damn sick.
I have been diag with so many things...When people ask me what is wrong I want to blow a fuse... I tell them something I can't hardly say and definately can't spell!! ME!!
I traveled to see Dr. Fry in Az...and was tested for Protomyxoia Rheumatica - a NASTY parasite that Dr. Fry maintains causes everything from RA, MS, to CFS!! Surprise...surprise when my test came back positive... Treatment is to have a VERY ULTRA LOW FAT diet... which is dang hard to stick to... NO OLIVE OIL...nuts...etc... I have had a very hard time sticking to it... www.frylabs.com
How is a sickly person who lives on the couch ... unable to put together a sentence at times...supposed to figure all of this out... Dr. Shoemaker in MD...said I had MOLD ILLNESS, another Doc..LYME DISEASE/LUPUS... Fibromyalgia...CFS.... Hashimotos.....Protomyxoia.... and now ME .... Just shoot me already!
Have recently completed 2nd infusion of Rituxan...have 4 more to go... Last week I had 5 days in a row where I LEFT the house, went out to dinner 2 nites, did things I normally could not do...and today WHAM..SLAM...back on couch with all the same ol... Burning bones, nerves, muscles.
Took a walk with my daughter and you'd think I had been in the damn olympics or something...SO STIFF...sore...burning... So another another day back on the couch...
I know this is "normal"...but I lay here wondering were those 5 days bc my immune system is missing half its soldiers so unable to throw off inflammation...and now they are comin back... or was it because viral load decreased and now it is comin back... I do plan to ask Dr. K...
Meanwhile just wanted to know if any of you had heard or been tested for this fun little beast???
So confusing in this jumbled up mess... WHAT CAME first??? The tick bite and Lyme Bactera, then viruses...then parasite? I need to bust out a crystal ball right now... Anyone have one???
Thanks for listening... Humbug...
Jacque
Many of you are very intelligent and analytical so wanted to bounce this off of you...
As I sit here pondering why I had 5 days of GREAT energy and now slammed back on couch...my mind is filled with all kinds of questions...
My eyeballs literally start going in circles like that snake on Jungle Book when I try to unravel WHAT the FRIGGGG is makin me so damn sick.
I have been diag with so many things...When people ask me what is wrong I want to blow a fuse... I tell them something I can't hardly say and definately can't spell!! ME!!
I traveled to see Dr. Fry in Az...and was tested for Protomyxoia Rheumatica - a NASTY parasite that Dr. Fry maintains causes everything from RA, MS, to CFS!! Surprise...surprise when my test came back positive... Treatment is to have a VERY ULTRA LOW FAT diet... which is dang hard to stick to... NO OLIVE OIL...nuts...etc... I have had a very hard time sticking to it... www.frylabs.com
How is a sickly person who lives on the couch ... unable to put together a sentence at times...supposed to figure all of this out... Dr. Shoemaker in MD...said I had MOLD ILLNESS, another Doc..LYME DISEASE/LUPUS... Fibromyalgia...CFS.... Hashimotos.....Protomyxoia.... and now ME .... Just shoot me already!
Have recently completed 2nd infusion of Rituxan...have 4 more to go... Last week I had 5 days in a row where I LEFT the house, went out to dinner 2 nites, did things I normally could not do...and today WHAM..SLAM...back on couch with all the same ol... Burning bones, nerves, muscles.
Took a walk with my daughter and you'd think I had been in the damn olympics or something...SO STIFF...sore...burning... So another another day back on the couch...
I know this is "normal"...but I lay here wondering were those 5 days bc my immune system is missing half its soldiers so unable to throw off inflammation...and now they are comin back... or was it because viral load decreased and now it is comin back... I do plan to ask Dr. K...
Meanwhile just wanted to know if any of you had heard or been tested for this fun little beast???
So confusing in this jumbled up mess... WHAT CAME first??? The tick bite and Lyme Bactera, then viruses...then parasite? I need to bust out a crystal ball right now... Anyone have one???
Thanks for listening... Humbug...
Jacque