posted
Hi. I am thinking I might have Lyme as I have not been feeling very well for about 6-8 months and my symptoms seem to be getting worse. I was tested for lyme back in Sept 05 and doctor said "negative" (although I never saw the results), then 1 week later I pulled a tick off my body (was embedded in my skin) and my dr said if no rash and no symptoms don't worry. I had no specific symptoms right away, but then I felt joint pain, fatigue, pains for next several months and finally had lyme test called "Ab w/rfx IgG, IgM" on Jan 12th -> results were: "Lyme Disease Screen .44" "Lyme Disease interpretation - negative"
does this mean I don't have lyme? What kind of test is this?
My sharp & random shootings pains (ear, hands, legs, lately pelvis area), tingling feelings, joint pain (no real headaches to speak of besides probably from stress) have now progressed to muscle twitches all over my body and turning into muscle jerks. I have an appt w/a known Lyme Disease Doctor in Stamford, CT in 3 weeks but wondering if it is possible to have this "negative" test and still actually have Lyme Disease. I also have an appointment with an neurologist for fear of ALS, MS. Thanks in advance for all your help as I don't know a lot about this disease but clearly should given where I live (CT) and my symptoms. Thanks you so much for your help.
Posts: 31 | From CT | Registered: Mar 2006
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Sounds like a screening test for lyme, like maybe an ELISA?? Do you see that listed somewhere??
Is it from Quest Labs?? If so, then it's VERY possible to have Lyme if that is the lab that was used.
At any rate, you really need a Western Blot done by Igenex Labs in CA.
About that dr in Stamford. I'm not sure he/she is an LLMD. That would be a Lyme Literate MD. Sometimes Lyme drs only believe in treating for 4 wks. If you've had this for 6-8 months, then you need to find a dr who will treat as long as it takes to get well.
Go to the upper portion of the medical questions and look for Treepatrol's links. You will find great info there about the testing.
PS....Most neuros do NOT test or treat for Lyme, so don't expect any of them to know anything about it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
This is a story you'll hear a thousand times on this site. Pulled off a tick, doc said no lyme, symptoms started manifesting later, misdiagnosis of MS, CFS, etc.
Find out months/years later it was really lyme all along, but now it's very difficult to treat because it's invaded several bodily systems.
Fact: 99.999% of doc's are clueless about lyme. Fact: Testing, especially early testing is inaccurate 50% of the time. Nearly everyone on this board had an early test for lyme that was negative, but in actuality they had lyme.
Advice ? Read this board, you'll learn a ton. Secondly, go to the "Seeking a doctor" section of this site and post a request for a good doc near your area. Someone will PM you doc contact info. We do not post doc names or info on the site.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
test was done at Quest ... the "lyme doctor" is in Stamford, CT which a friend had his wife go to when she was in intensive care for lyme disease (she was on IV for 3 months and is now better) and also she was listed as one of the top lyme specialist dr's in New Yorker magazine a few years back. the twitching and jerks are really what's freaking me out as I'm worried whatever I have is now attacking my CNS. thanks for your help.
[ 27. March 2006, 09:22 PM: Message edited by: glennlaj ]
Posts: 31 | From CT | Registered: Mar 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Quest ? They couldn't find a ham sandwich in a deli. Worst lab in the country. Notorious for missing lyme. I don't know about the doc you mentioned, perhaps others can help.
In reading your story, it would be a miracle if you didn't have lyme !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
quote:Originally posted by glennlaj: Hi. I am thinking I might have Lyme as I have not been feeling very well for about 6-8 months
and my symptoms seem to be getting worse. I was tested for lyme back in Sept 05 and doctor said "negative" (although I never saw the results),
then 1 week later I pulled a tick off my body (was embedded in my skin) and my dr said if no rash and no symptoms don't worry.
I had no specific symptoms right away, but then I felt joint pain, fatigue, pains for next several months and finally had lyme test
called "Ab w/rfx IgG, IgM" on Jan 12th -> results were: "Lyme Disease Screen .44" "Lyme Disease interpretation - negative"
does this mean I don't have lyme? What kind of test is this?
My sharp & random shootings pains (ear, hands, legs, lately pelvis area), tingling feelings, joint pain
(no real headaches to speak of besides probably from stress)
have now progressed to muscle twitches all over my body and turning into muscle jerks.
I have an appt w/a known Lyme Disease Doctor in CT in 3 weeks but wondering if it is possible to have this "negative" test and still actually have Lyme Disease.
I also have an appointment with an neurologist for fear of ALS, MS.
Thanks in advance for all your help as I don't know a lot about this disease but clearly should given where I live (CT) and my symptoms.
Thanks you so much for your help.
breaking it up for those who cant read big paragraphs...
A lyme diagnosis should not be made solely from a test.....
It is a clinical diagnosis.... which means you can be diagnosised based on your symptoms....
the tests just arent accurate enough.... although some labs are better (like Igenex ect.)
Have you checked out the newbie link.... it should have a list of possible symptoms with lyme....
I think you will find all of the ones you have...
actually I have many of the ones you have.
If you have lyme a LLMD will be able to diagnose you,,,,
make sure you really have a lyme literate dr..... some drs claim to be lyme literate and don't know lyme from their elbow.
quote:Originally posted by glennlaj: test was done at Quest ... [/QB]
NP40 is RIGHT ON! Quest is pitiful! If your test is not clearly positive, this dr in Stamford may not treat you.
Lyme IS a clinical diagnosis....but you need a real LLMD.
PS.....Please edit out the name. We aren't allowed to post dr's names here for their safety.
Keep reading and learning!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
That is NO lyme doc. No way. As others have said, this is a clinical diagnosis, not to be made based solely on blood work.
If the tick was still attached, it is VERY possible that you were tested TOO SOON to actually have a positive test. I forget how soon is too soon, but you can be tested too soon.
You might want to try getting tested through MDL, they are reputable and they take insurance and they are on the east coast.
It sounds over whelming, but it isnt that hard to get an uneducated doc (duck) to order this test for you and get your blood sent to a proper lab.
Please find another doctor willing to treat for Lyme while you get a LLMD appointment. Your symptoms and the presentation sound very much like lyme.
take care, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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WildCondor
Unregistered
posted
Welcome....
Your doctor does not sound like a LLMD for me, but we cannot be sure. Yes, the testing means nothing and you can still have Lyme disease no matter what the tests say. No doctor should rely on the tests, and if they do, then they are not a Lyme doctor.
Please read up about Lyme Disease so you are better able to understand what to do and say and the doctors.
quote:Originally posted by trails: That is NO lyme doc. [/QB]
Which one? He has an appointment with a "lyme dr" in 3 wks. I have my doubts about this person since I've been on this board for 5+ yrs and have never heard of him/her.
His current dr DEFINITELY is not knowledgeable about Lyme. That's a given.
Hey, Glenn. Did we scare you off?? [I'll bet he's busy reading!]
Any more questions??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
"also she was listed as one of the top lyme specialist dr's in New Yorker magazine a few years back"
I can't say this for sure without knowing the doc, but I would not trust a doc listed in New Yorker magazine as being a top lyme doc. I mean maybe in the Steere camp (not good if you have Lyme)....... and you will learn about Steere if your around here any length of time ..... get to a doc recommended by a least 2 or 3 people on this board.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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bettyg
Unregistered
posted
Glenn, Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often. YOU MENTIONED ALS/MS: Both of these are listed in TREEPATROL newbie links. Also, since this concerns you very much. There has been a lot of discussion the last 2 months about ALS/MS/lyme ... which do patients have .
So when you take a deep breath and have MADE your appt. for a LLMD based upon member's recommendations, come back here to MEDICAL section, and just read the TOPIC TITLES ONLY looking for ALS/MS/lyme ... there are many on the board. So you will fit right in with them.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
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