posted
Hello all, I'm new here. I got tested for lyme disease a week ago and got my tests yesterday. The lab that did the testing was LabCorp and here are my results:
Lyme IgG/IgM Ab: 1.15 (Index 0.00-0.90)
Lyme Ab Interp., EIA: Positive
Lyme IgM by WB: IgM P41 Ab: Positive
-All this means Negative for lyme disease (I was told I was a borderline case)
Nothing else was positive, but I wasn't tested on all the bands either. My vitamin d was low too, which is weird to me because I'm in the sun all the time.
I decided to get tested because I was bitten by a tick in 2001 on my lower back and it was on me for two weeks (thought it was a scab). I pulled on it once while it was embedded and I saw pink flesh and a dark brown ring around it (I'm of color).
I was told that I probably wasn't infected because I didn't have flu-like symptoms. I didn't knowingly have rapid symptoms, but I notice differences, like allergies, memory loss, and a flu-like illness a few months down the road.
I was in high school at the time and almost never go sick and had stellar attendance. I started being absent from class more and more from fatigue. I'm surprised I graduated high school lol.
Now I'm in college and for much longer than I should be because my memory has deteriorated terribly and I have debilitating fatigue. I've considered putting school on hold until I get better, but I don't know about that idea.
I have many other symptoms but I'm not going to bore anyone. Let's just say most of my symptoms are neurological. It's so bad that I traveled back to my home state and missed my final exams to seek treatment.
Let me also mention that I worked these last two summers in a park in a highly infested tick area in Maryland. I had an ugly bite that I thought was caused by a spider because it had a center, was raised like a hard bump, and was itchy, but I soon had a ring around that as well and took months to heal.
I was given a two-week trial of doxy as a precaution and was on it while I was tested, so that could've had an effect on my results. I just finished and it seemed like my symptoms worsened since stopping. My test was done by a normal doctor.
Since I didn't qualify for lyme according to the CDC, there has to be some type of spirolette(?) that I have an antibody to. It's making me nervous.
I guess I should see a LLMD, but I'm a college student who can't afford to see one at this time unless they take insurance. I don't know what to do right now.
[ 24. December 2008, 12:51 AM: Message edited by: GDP ]
Posts: 11 | From Maryland/Alabama | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome G...
Sorry you are having problems.
See you later.
EDIT- Oops! Seems BettyG slipped in here before I got back to you and got done responding.
sorry but i'm one of many hear who can not read LONG solid block text with no paragraphs. please break this up per suggestions below, and then i'll try to help you, and others won't scroll on by, sob, without answering.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
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.
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!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well that rude response I made was a LITTLE bit better than saying I had to go to the bathroom.. wasn't it?
Sorry.. nature called. Couldn't help myself!
Ok.. back to business...
One BIG point.
Having a borderline test for Lyme is like saying you are borderline pregnant.
No such thang!
You had a bite in a highly endemic area, a Lyme rash (a rash alone indicates Lyme), symptoms that are typical of Lyme... and a positive blood test.
You've got Lyme!
Your problem is.. you have a duck rather than a doctor guiding your health care needs.. and boy are they messing up BIG time!
And they should know better!!!
ALSO...
Keep in mind the tests miss 75-90 percent of people who have Lyme disease. YOU ARE LUCKY TO HAVE A POSITIVE TEST.
Your early treatment was totally inadequate. Your doctor should have followed you more closely too.
Dump the duck and get yourself to a doctor who can and will help you... ASAP. You don't want to risk getting worse. Some of the damage can not be reversed.
You are young... so get help NOW so you don't end up old, stupid and disabled like me.
Most LLMD's in Maryland are booked full with appointments. It may take a while to get an appointment... so start looking.
Very few take insurance... not because they don't want to.. but because of the butt-head IDSA and the trouble they have caused.
posted
Sorry Betty for making it so lengthy. I hope my editing has made it better. Thank you Tin for replying. It's nice to talk to people who understand.
Posts: 11 | From Maryland/Alabama | Registered: Dec 2008
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bettyg
Unregistered
posted
gp,
outstanding job of breaking this up for my neuro lyme!! length was fine; we just needed to be able to comprehend it all.
to all, i sent gp LLMD info for maryland! ******************************************
yes, i'd be prepared to stop college for now when you start treatment. you can read of others situations in SUPPORT FORUM; many like you here from college!
tincup gave you good info as usual.
while you are waiting to get into a dr., you can start reading the basics to become more knowledgeable, and those links are in my 1st post to you. glad you found us...
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adamm
Unregistered
posted
Unfortunately, only a few other things, which you'd know if you had (syphilis, leptospirosis, very advanced periodontal disease). That moot, though, along with the fact that you didn't have a CDC positive; the rash you had is diagnostic of the infection.
Check out lyme-info.net and lymecryme.com for more info.
Hope you can find some way to get help. I'm also in college, and know how hard it can be. If you educated your parents, would they be able to help you pay for an LLMD (doc who follows ILADS rather than IDSA guidelines)?
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posted
You also might get a lab kit from Igenex labs and get a physician to test you. It is better than LabCorp.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10193 | From Illinois | Registered: Aug 2004
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adamm
Unregistered
posted
Btw, your test still strongly suggests infection, so maybe you can show it to a doc along with Dr. C's Western Blot explanation if he or she asks for labwork indicating you're infected.
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posted
Wow, thank you guys for the information. It's definitely helpful. Posts: 11 | From Maryland/Alabama | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
As others suggest, this could well be lyme. Tests are spotty.
Here's a sort of anotated bibilography intended as a resource to guide you. It is lengthy because I want to be sure you have the basics to move ahead. As with all replies, you might want to copy and paste to a file - or print out for easier reference.
Best of luck to you. This all began for me way back in college but it was not addressed until decades later. I hope you find what you need soon.
Take care.
---
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Here's a wonderful introductory article, too. This is also an excellent article to share with friends and family. It explains so much.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
========================
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
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/
UBBFriend: Email this page to someone!
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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.![[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. ![[Roll Eyes]](rolleyes.gif)
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