Hi and thank you for approving me. To make a long story not, about 12 years ago, I developed a rash on my right wrist. There was no pain that I recall, but it (the rash) was roughly the size of a silver dollar, was raised about 1/4 inch and had a dot in the center. At that time I was going thru a divorce, so I didn't give it much thought.
Now, at the age of 45, I am in an assisted living facility because of several medical issues: a bad back, trigeminal neauralgia, chronic fatigue syndrome, some neurological things within my skull, etc.
I have read a bit about Lyme symptoms and I would have to say, I seem to have 90 % or higher of the symptoms. I requested a test, which was done with a blood draw and, a day later, was told the test was negative. I have spoken with a physical therapist who advised that I need to insist that an "anti-body" test be done.
Would you have any info/recommendations?
Thank you for your time. Very Truly Yours, Bob Bailey
Posted by disturbedme (Member # 12346) on :
They probably did the Elisa test which is the antibody test... MOST of those tests come back negative.
You need to have a Western Blot done. Lab Corp or Quest is usually not a good place to have it done, but it can be a starting point. If that comes back negative, it doesn't mean you don't have it.
You should look for a lyme literate doctor who will know what to do and will test you through IgeneX which is a lab that specializes in lyme testing.
Posted by bettyg (Member # 6147) on :
welcome bob bailey! glad you found us!!
i've got info galore for you in what i'll tell you about below.
you need western blot igm and igg blood test drawn and sent to igenex, calif.
also, should have CO-INFECTION testing done for bartonella, babsiosa, and erlichia...most common ones. we recommend fry labs in arizona for that; as good as and cheapter than igenex!
are you on SSDI, disability insurance benefits, and MEDICARE? IF ON MEDICARE, TESTING IS "FREE" AT IGENEX!! *******************************************
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.
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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. *******************
Posted by cjnelson (Member # 12928) on :
Hate that you are in an assistant living facility at the age of 45! YIKES!!!
You are smart to KEEP LOOKING!! Kudos on your efforts!
It may be difficult to get testing done as you need in your situation. Are your MD's on site???? Or can you travel to them???
If you can travel post in SEEKING DOCTOR and find a LLMD - Lyme Literat Medical Doctor - that will order the proper testing.
Otherwise as you MD for an antibiotic challenge and see if they would be willing to do this.
Keep us updated!
Posted by mecop186 (Member # 15540) on :
Wow! Thank you ALL for the replies!
I'm going to be reading thru the posts here and
will probably have a zillion questions for you
all. I will try to be sure that I look for
particular answers before I clutter up the board
with repeat questions.
Thanks Again Bob
Posted by Lymetoo (Member # 743) on :
Do NOT worry about "cluttering up" the board!! We want to save you!!
Yes, get a Western Blot test done... preferably at Igenex Lab in CA. It will cost about $200.
You sound like you really could have Lyme. That rash was likely a small bullseye. If so, then you have it for sure.
you have lyme. that particular rash is diagnostic, and a negative
test means absolutely nothing. If you do a search here,
you'll see that Johns Hopkins confirmed this in a recently published
study.
You should post in seeking a doc and find an LLMD asap.
Posted by groovy2 (Member # 6304) on :
Hi ME --
All of the tests are very poor and get worse threw time -
If What you saw was a Lyme Bullseye you have lyme -
Lyme is Best Diagnosed by Symptoms- If you have 90% of them you are most likely looking in the right place-
I have been sick for 20 yrs - I was a month or 2 from having to go to assisted living place -
I also had about 90% of the symptoms- and saw a bullseye -
Now after 3 yrs of treatment I feel Perty Good most of the time -
Last Saturday I walked 10 miles - Boy my feet hurt -
If I can get better You Can TOO -
--Jay--
Posted by mecop186 (Member # 15540) on :
I was diagnosed with Trigeminal Neuralgia in
2000. The diagnosis was based entirely on
the "ice pick" headaches I would get on the
right side of my face. I was put on EVERY pain
killer out there, including Fentanyl Patches,
Dilauded, Percocet, etc.
I finally had Gamma Knife surgery done at New
England Medical Center in Boston on Sept. 11,
2002. Didn't help, PLUS I'm scared to death of
hospitals now! Long story short... I had to have
this medival device screwed into my skull at 4
points. Once they did that, I was slid into an
MRI (have had more than 45 MRI's since then).
After about a minute or so, I saw a little puff
of smoke and then it felt like a blowtorch being
held on my forehead. I rang the buzzer and they
asked if needed something. I said that something
was pretty uncomfortable. They came in and the
next thing I knew, their pulling me out and
there's 6 staff people crowding around me. They
told me that one of the four titanium screws
was, well, not titanium, it was the "other kind"
and they asked if I wanted to speak to the dept
head. I was pretty sketchy on that, so I said no
So, I HATE hospitals
now!
But, could this diagnosis have been wrong? I
have had many Lyme symptoms for a long time.
Thanks again... you guys are great! Bob
Posted by sixgoofykids (Member # 11141) on :
It sounds very possible that you have Lyme ... actually, very likely.
I never have trusted doctors for years because of all my misdiagnoses, but going to the Lyme doctor was very different. I encourage you to post under seeking doctors to find one near you.
Don't mess around with the non-Lyme literate docs anymore.
Posted by tailz (Member # 10014) on :
quote:Once they did that, I was slid into an
MRI (have had more than 45 MRI's since then).
After about a minute or so, I saw a little puff
of smoke and then it felt like a blowtorch being
held on my forehead. I rang the buzzer and they
asked if needed something. I said that something
was pretty uncomfortable.
Your rash indicates that you most likely have Lyme (and one or more of the coinfections), but don't stop there. 45 MRIs?
I'd bet my right arm AND my left arm that you are also electrosensitive like I am, too. I thought I'd die during a SPECT scan of my brain.
![[Smile]](smile.gif)
![[Wink]](wink.gif)
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. ![[Frown]](frown.gif)
