posted
Hello everyone. I am new here and am searching for a Lyme Literate Doc in my area. I live in San Antonio,Tx. too bettyg.
I have been dealing with the VA since 98. Before that the Army docs. I was diagnosed with Fibromyalgia in 96. Don't get me started on that Diagnosis!
Although as time progressed my systems and my health deteriorated. I know I am now infected with Chronic Lyme. There are days I can barely dress myself. Due to the fact I can barely lift my arms without being in severe pain.
Or days that I can't even make it to the second floor of my house. I am plauged by HORRIFIC headaches and neck pain that is deep in the bone. Which makes it so stiff I can not move it.
I have insomnia, nightsweats, muscle twitches, heart palpitations, feelings of shakiness....those are only a few of them.
I also am plauged with severe tinitis. Too the point I have hearing loss in my left ear. To which I am now the proud OWNER of hearing aids!
My bone density in my lower lumbar from the L1-4 was -2.3 and -1.8 in my hips. NONE of the doctors wanted to put me on Fosomax or anything. To include the Endocrinologist. I just turned 39 this past Feb. and feel like I am 80!
I've seen three different Rheumo's at the wonderful VA here in SA since 99, but no dice. I finally got my PCP to run the ELISA and West Blot in Jan 08. Since my ELISA was neg. but the West blot was pos. He didn't think I had true lyme!
He wrote a consult for me to see Infectious Control. I then waited from Jan. to May and heard NOTHING! I called him back and was told that Infectious Control will not see me. They say I am far from having it.
I told him that Labs are inconclusive. I have ALL the signs and symptoms of Lyme. Not to mention the fact that I was bitten once that I KNOW of.
I was also stationed in Landstuhl,Ge. for 2yrs. I ran the trails and mountainbiked there every day. Stars and Stripes put out an Alert for Soldiers in Europe last year for ticks. So, there is NO telling what they were like when I was stationed there.
I need some HELP FAST! Before things take a drastic turn. If that is even possible.... zephyr
P.S. I am new to this thing. So please bare with me. I hope this helps by breaking it up this way. I too have SEVERE memory loss and incognitiveness!
[ 24. May 2008, 05:16 PM: Message edited by: Nora DeBoard ]
Posts: 109 | From San Antonio,Tx | Registered: May 2008
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posted
A positive Western Blot is WAY more important than a neg ELISA!! Even Johns Hopkins admits that the ELISA is flawed.
Can you travel at all to get help???
PM sent to Nora.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
welcome nora; so glad you found us!!
nora, i'm a neuro lymie and couldn't read your solid block text; please edit it using the directions below ok!!
VA stood out; go to ACTIVISM; there are certain posts on there about VETERANS..PAST/PRESENT ... many from DAISE; so look for them and get involved in them for finally trying to get help for VETS W/LYME DISEASE!!
let me know by a private message, the 2 people standing together after you've broken up your post, and then i'll come back to read it for 1st time ok!!
tutu, i also sent louisiana to 1st poster!! **********************************************
nora, WELCOME, would you like a FREE copy of my newbie package of 120 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to 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.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
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.
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.
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bettyg
Unregistered
posted
quote:Originally posted by Nora DeBoard:
Hello everyone. I am new here and am searching for a Lyme Literate Doc in my area. I live in San Antonio,Tx. too bettyg.
I have insomnia, nightsweats, muscle twitches, heart palpitations, feelings of shakiness....those are only a few of them.
My bone density in my lower lumbar from the L1-4 was -2.3 and -1.8 in my hips. NONE of the doctors wanted to put me on Fosomax or anything.
I finally got my PCP to run the ELISA and West Blot in Jan 08. Since my ELISA was neg. but the West blot was pos. He didn't think I had true lyme!
I told him that Labs are inconclusive. I have ALL the signs and symptoms of Lyme. Not to mention the fact that I was bitten once that I KNOW of.
P.S. I am new to this thing. So please bare with me. I hope this helps by breaking it up this way. I too have SEVERE memory loss and incognitiveness!
Nora, OUTSTANDING job on breaking up your post for me/others so we CAN HELP YOU!
have you ever had a sleep study done to see if you suffer from SLEEP APNEA, where you stop breathing when sleeping and wake up gasping for air? many of us have that.
stomach problems, have you been tested for food allergies .... gluten and dairy products? many of us lymies suffer with that too.
do NOT TAKE FOSAMAX; are your teeth/gums good? 2 on here have had their jaw bones removed to COMPLICATIONS FROM SIDE EFFECTS!!!
what lab did your western blot igm and igg?
would you list ALL POSITIVES AND INDETERMINED for us for igm and igg going DOWNWARD on numbers .... not across.
we do NOT NEED NEGATIVES; just + and IND ones!
daise OUTSTANDING reply to her with covering 100% of the bases.
nora, we are in the fight for our lives; you are now in the LYME CONTROVERSY WAR!
in activism, please read the posts about PALLONE; they're holding up our 2 lymes bills in congress due to IDSA, infectious drs. society of america, due to CONN. ATTORNEY GENERAL'S BLUMENTHAL'S recent decision about ISDA anti-trust fraud claims.
they were found guilty of CONFLICTS OF INTERESTS: patents, grants, serving on 2 committees deciding wordage on lyme guidelines, etc.
we have until may 30/31 to get our LYME BILLS ON "AGENDA" IN BOTH HOUSE/SENATE!
please call the 3-4 phone numbers there:
pallone's office
kennedy's SUB-COMMITTEE HEALTH office, which is NOT his direct office no.
1 more...can't remember name.
have your relatives/friends call too.
it's house bill 741...want on agenda NOW.
senate bill 1708...want on agenda now.
our 2 bills have been in congress 10.5 YEARS!~!! unacceptable.
if you could; just copy/paste your note to us and send to them AND YOUR STATE'S SENATORS/HOUSE REPS IN DC!! ************************************
i'm going to send you my newbie package also; it has a table of contents to help you find things; not all done...all my SSDI, social security disablity insurance app process isn't done yet! .... sending that my PM, private message!
you're younger than me, 59; last year had to have 1 hip replaced. surgeon chipped my bone...my bones are 20 yrs. OLDER than i am!!! later!
again, thanks for breaking up your posts, and i could help you better!
besides calling/emailing PALLONE, KENNEDY, ETC., then read the posts on military action from daise; you have other things going on where you can copy/paste your story there and send to person collecting for Dr. Burrascano, RETIRED, so i can give his name.
he wrote ILADS, international lyme associated disease sociiety, 05 lyme treatment guidelines. he's doing research now. his asst. is collecting info on VETS!
best wishes; so glad you found us!
I'LL SEND YOU MY TEXAS/LOUISIANA LLMDS by pm. **********************************************
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posted
Thanks SO MUCH for all the info. I will post my labs. I will post them under a new topic under medical.
Posts: 109 | From San Antonio,Tx | Registered: May 2008
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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. ![[group hug]](graemlins/grouphug.gif)
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