posted
I have been in treatment for two years and just when I think I am getting better(symptoms die down for a week or so) then WHAM and they are back. I have Bart and Lyme and have for 20 years but was not properly treated until 2 years ago. I have been on alot, now on Doxy and Zith for the last month and a half. My main symptoms are constant dizziness and twitching. The twitching was almost gone and tonight is worse then it has been in over a year...and the dizziness almost gets better and then comes back. I have brain lesions that have gotten smaller and was told originally that I had MS. Even though I caught the tick that bit me and had the EM rash I think the MS thing scares me to tears, that maybe that Duck was right. Does anyone have any thoughts on all of this...I would so appreciate it. Spent the day crying. Thank you ever so much.
Posts: 298 | From los angeles | Registered: Mar 2006
| IP: Logged |
bettyg
Unregistered
posted
please EMPTY PM BOX; IT'S FULL; i would have sent this that way, but can't...
please break up this entire post into SHORT PARAGRAPHS so it can be read and comprehended by we neuro lyme patients...
sorry have to SOB, SCROLL ON BY, since i can't read it as is...
please follow instructions below; BIG THANKS! xox
Welcome; so glad you found us!! xox
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY! *************************************************************
Also, please be VERY SPECIFIC in subject line what you will be discussing.
Example:
PLEASE show your positive, +/-, and IND numbers from both western blot IGG AND IGM blood tests; do it this way please!
IGM ... do same thing for IGG below IGM *******************************************
18 + 41 +/- 78 IND
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! -----------------------------------------------------------------------------------
also, please see below, TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
Me too! Since last Summer. But some things just didn't add up to me. And living/eating/treating as if I had Porph didn't help with all the other symptoms. So, I didn't get better and pushed on...
TBD fits like a glove and I have MAJOR exposure liabilty, been bitten, rash, on and on.
Who knows maybe I have both.
That would make treatment more challenging but I have been reading up and it is still very doable.
(But I really think it was the TBD elevating the porphyrins in my urine.)
Only wish I had thought about TBD sooner How in the hell did I miss all of this ?
Posts: 68 | From Pittsburgh | Registered: Aug 2008
| IP: Logged |
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Sameetra,
I can't remember at the moment which co-infection mimics porphyria. I think bart. My neuro thought I had it because of the reaction I had when I'd drink alcohol.
Since treatment I don't have that reaction anymore.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6167 | From Columbus, GA | Registered: Jul 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/