On average, how long to test results take to be returned? I had an ELISA and a "lyme panel" at Quest on March 18th and the docs office called the lab looking for them today for me and they aren't back yet.
Maybe I am just being impatient, but I am so sick of being sick and seem to wake up each day with a new symptom and am so sick of people telling me that I have "accumulated fatigue" or asking me if I am depressed and maybe don't know it!
I have had debilitating fatigue, headaches so bad that they wake me up in the middle of the night, eye blurriness and ticks in my eye, numbness in my fingers and side of my face, arthritis in my knee, a constant low fever for 4 months, recently I've gotten lost driving my normal route to the train station and spent a very frightening 5 mins standing in front of a gas pump because I couldn't remember how to pump gas. I am a PhD student, so I've always been accutely aware of my cognitive abilities and now am aware of them failing me.
A visit to my doc in January resulted in a positive ANA test, so he sent me to a rheumatologist who diagnosed kneecap arthritis, but negative on the Lupus or rheumatoid arthritis, etc. But a follow up MRI showed a small lesion in my temporal lobe, which then sent me to a neurologist.
The neurologist found physical evidence of an eye problem that the opth didn't find, (something about the nerves at the back of my eyes) and double vision I didn't know I had because it is in my peripheral vision. Her exam also found cognitive and balance problems. Overall she said she believes I have a blood flow problem in my brain and has ordered MRA/MRV/EEG/VEP and neuropsych tests. But, she was completely stunned that after 2 docs and 27 blood tests, that I have never had a Lyme test! The other docs had asked me if I had ever been bitten and I don't remember ever having been, so they dismissed it and never followed through.
When I left her and had the bloodwork I started reading about Lyme and it sounds just like the progression of my disease! Now if I could just get the results (and have them be accurate one way or another) it would be a good thing! Sorry for rambling, I am a bit scrambled these days!
posted
Thanks for answering! I'm not 100pct sure what a "lyme panel" means, but I guess I will just have to be patient.
One other quick question, does lyme effect BP? I've always had VERY low BP like 90/60 and all of the sudden it has jumped to 120/80. Which I know is "normal" but it isn't normal for me.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hi Cher, Unfortunately there are a lot of symptoms that are attributed to lyme disease(the great imitator). You have some now and may get more later...be advised that you should have them checked for other reasons as well.
The blood flow issue is one that seems to accompany lyme. IMO it's due to the attack on the nervous system...your eyes,balance,and memory(cognitive functions)geometrical cognition(forgetting where you're going or how to do simple tasks etc...seem to have something to do with either slow blood flow to brain(have a spect scan done) and or messages in the frontal lobe of the brain. Spirochetal infection of brain interferes with proper communication between neurons.
I had a blood test done by quest and one done by igenex the same day...quest came back negative and igenex positive...
Test takes from 13days to 21days for results. Western Blot is better of the tests but even that can come back false negative. But not false positive. Get to a LLMD as soon as you can and get on some sort of antibiotic. ...........................zman
Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
posted
Thank you again to all. The neuro actually just called me to tell me that all of my test results were negative. When I said that after reading stuff I thought there was a good possibility of lyme, she rechecked the tests and said every part of every test came back negative and said that lyme has so many symptoms that anyone with a neurological problem could think that it may be lyme. The neuroradiologist also could not identify the spot in my temporal lobe he said it was an "abnormality" and the MRI should be repeated.
The MRA/MRV/VEP/and EEG are scheduled for a week from tomorrow. Since it is only a week, I think I am just going to have those done and then if they don't explain the cause of my symptoms, I will have the test through Igenex done.
(I just realized I got so caught up in the moment that I forgot to ask specifically WHICH tests they ran! GEEZ!)
They probably ran the ELISA pre-screening test and possibly the Western Blot.
There are over 100 known strains of Lyme in the US at this time. Quest only uses 1 strains antibodies to test against. If you don't have that strain or one very similar to it, according to them, you don't have Lyme disease.
Igenex uses 3 strains (the last time I looked about a year ago) and they have a much better chance of finding a positive reaction because of this.
You need to find a Lyme Literate Medical Doctor (LLMD). Please post to "Seeking a Doctor" to at least find out who's in your area and call them for some info.
posted
I definately will follow the suggestions you all made and thank you for them. I am going to go through the neurological exams next week first just to make sure that all of this isn't strictly neurological as the doc suspects. (can't mess around if it is even a remote possibility!) But, I have a feeling after those tests I will be back to the docs not being to explain why they see the things they do and will be finding a LLMD and contacting Igenex.
You all have been very helpful and welcoming, it really is a very supportive site! Thanks!
posted
Cher-Negative means different things to different people. Ask for a copy of your Western Blot,if one was done, then do an internet search for significance of Lyme Western Blot bands-if you have even one Lyme specific band(18,23,31,34,37,39,83,93) that's diagnostic. You may be able to avoid the neuro testing next week. If you have any Lyme specific bands get on Doxycycline at least 200 mg a day(always take with a full glass of water and with food, do not lie down for 30 minutes after taking to avoid GI distress). Then get your butt to an LLMD ASAP,sometimes takes a while to get an appt. so stay on doxy until you see the LLMD. If Western Blot wasn't done then get one. Pat
Posts: 79 | From NJ | Registered: Mar 2005
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posted
I'm looking at my results and every band is non-reactive. But many of the bands you talk about and in the "interpreting WB" post aren't on here...i.e. no 24, 25, 31, 34, 37, or 83. My ELISA was also Negative at .59 (equiv starts at 1.0). To me, these tests would point strongly toward a negative. Am I wrong in thinking this?
Posts: 17 | From CT | Registered: Mar 2005
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quote:Originally posted by Corgilla: There are over 100 known strains of Lyme in the US at this time. Quest only uses 1 strains antibodies to test against. If you don't have that strain or one very similar to it, according to them, you don't have Lyme disease.
Igenex uses 3 strains (the last time I looked about a year ago) and they have a much better chance of finding a positive reaction because of this.
Your answer is here, Cher!
The fact that the bands mentioned in the WB link are not there, is KEY! The test your dr ran is very inadequate at finding Lyme.
Are you saying you didn't have ANY reactive bands??
------------------ oops! Lymetutu
[This message has been edited by Lymetoo (edited 31 March 2005).]
I am fairly new to this as you are. I was in your shoes about 3 mos ago. I know the results that you are seeing are discouraging, because you want SOMETHING to prove that you are not "imagining this". Everyone wants an answer to these perplexing symptoms.
I encourage you to be resolute in your drive to resolve this and heal yourself.
My initial WB did not show ANY bands positive either. My Elisa screen did show 1.57, but was brushed off as not having Lyme because of the 0 bands of the WB.
After 3 weeks of Doxy, a negative MRI, negative spinal TAP, I had an infectious disease dr do another Lyme Test...
At that point Band 23 came back positive. This is one of the "big 3" bands that the CDC considers in a diagnosis...and although they require 2 of the 3 to be considered positive, my new LLMD said one is good enough for them!
My point is that you should keep persuing your issue...despite what your results have been thus far. YOU KNOW YOURSELF BEST! Draw strength from that! Your test results may be different the next time around. Try to get on Doxy, or anything that will slow the progression.
Stay resolute!
Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005
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quote:Originally posted by Bill ATL: After 3 weeks of Doxy, a negative MRI, negative spinal TAP, I had an infectious disease dr do another Lyme Test...
At that point Band 23 came back positive.
The key here is that you went on doxy prior to the test. It will often cause the WB to show positive, or to show more bands.
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