Hello, I am fairly new to this site, so I hope this is the appropriate forum for my question. Two weeks ago, my daughter had a spinal tap done by an non LLMD to check for Lyme in her CSF. She already had Western BLot done, which was positive. I am afraid that the spinal results might be negative and then she will be sort of back to sguare one. This doc stated he wanted to check her for Neurological Lymes before beginning IV antibiotics (she had a few weeks of oral last AUgust) I am heartsick that, after going through the spinal tap, she might be having her test done at a lab that isnt necessarily the ideal choice. I now have read that certain labs are better than others. I cant see her going through another spinal tap if this one comes out negative. My guts tell me she does have Lyme disease still...she's been sick most of the year except a small rally a few weeks after the Doxycycline last summer...sorry this is so rambling, just wanted anyone's opinions re certain labs. And, btw...once we get back the results and/or she completes any IV's, I am taking her to a LLMD...as I have learned there are several choices right here in Central NJ I edited this post to delete the names of the labs...
Thanks, Ellen
Posted by groovy2 (Member # 6304) on :
Hi Elle
Spinal Tap looking for lyme is not recommended -
If WB test was done and it came out positive the odds are Very good you daughter has Lyme --
The Tests for Lyme and Co infections are Very Poor at this time -- Mostly waste of time --
False positives Very rare-- False Negatives -Common --
I have been on this site 3 years and have read about 15 to 20 people having ST done and Not One of the tests showed anything - Pain and Hassel for nothing--
Because the Tests are so poor Lyme and Co Infections Must be diagnosed by Symptoms
Test only to confirm Not Rule out Disease--
Many Many thing can Sque test results --
--Jay--
Posted by elle108 (Member # 11730) on :
Thanks Jay, She's already had the spinal tap. The rationale for doing it was to see if the Lyme organisms entered the CSF...Doc thinks she has symptoms of neurological lyme, thus might need IV abx, but felt a need to check the CFS first. SHe's had oral abx from pmd...but not for very long and this doctor said that they dont cross the blood-brain barrier... My question was also about feeling that the deck was stacked against this test coming out positive, even if she DOES have neurologicial Lyme because of the lab he sent it to...and I feel like she went thoriugh the whoel spinal tap for nothing..which is essentially what you're saying.
Posted by Lymetoo (Member # 743) on :
Yes, the spinal taps are a waste of time unless they are used to rule out other diseases. They are about 20% accurate for finding lyme even when using a good lab.
The spirochetes have to be picked up in that one tiny sample of fluid and if that one tiny sample doesnt' happen to contain any spirochetes, you're out of luck.
DEFINITELY get her in to see an LLMD! I'm so glad you have found some names. Make sure to check them out with happy satisfied patients!!!!
Lyme disease can spread to the brain in a matter of days, so the whole issue of seeing if she has neurolyme is a moot point in my opinion.
GO WITH THE POSITIVE WESTERN BLOT. That is all you need!!
Keep us posted on what you find out, OK?? If you need more names of LLMD's, let me know.
Posted by ByronSBell 2007 (Member # 11496) on :
Hi, I'm 18 and have been suffering with lyme since my 17th birthday, I had a spinal tap done and it showed absolutly NOTHING. I had a western blot done and it showed NOTHING. I finally got tested through Bowen Labs then Igenex and both of those tests were very strong positives. I regret ever having the spinal tap, I had low back pain from it ever since and now I feel it is starting to improve... I dont think we were designed to have big needles in or spines...?
I would recommend finding a doctor that specializes in Lyme Disease alone. If she had a positive western blot then she for a FACT has lyme disease and dont let anyone tell you otherwise...
When it comes to treating and diagnosing lym disease, infectious disease doctors are the absolute worst!!! I could just knock the fool out of my infectious disease quack.
Posted by 5dana8 (Member # 7935) on :
Hi Elle
Hope your daughter can find a LLMD & feel better soon
Blessings Dana
Posted by seibertneurolyme (Member # 6416) on :
elle,
Spinal taps are somewhat useful for diagnosing encephalitis, meningitis and M.S. but of little use for diagnosing Lyme. It is not really so much a matter of the lab really -- it is just the nature of the infection.
Hubby has had 3 spinal taps. Actually the first 2 were somewhat useful. The first one was about a year after he got sick and before he had any diagnosis -- used an old testing method which compares Lyme antibodies in the blood to the antibodies in the spinal fluid.
I consider the results significant especially in light of the fact that hubby has never even come close to having a positive Western Blot-- the test result was .96 I think -- anything above a 1.0 was considered posiitve.
I wish I had known more about Lyme at the time. Would have insisted on treatment based on test result rather than waiting another year for a positive PCR test.
2nd spinal tap was when hubby was doing an herbal treatment for Lyme -- before any antibiotics. Was unconscious in the hospital for 15 hours one day. Spinal tap showed elevated protein in CSF -- a nonspecific indication of infection. Hubby definitely had encephalopathy (probably not encephalitis though) although hospital only said "he doesn't have seizures -- go see a psychiatrist" ...
Based on the comments you made -- you obviously are not seeing an LLMD -- an LLMD would not use spinal tap results as the only basis to diagnose neurological Lyme. An insurance company might require a positive CSF Lyme test on the other hand before they would pay for IV antibiotics.
For Western Blot testing and testing for coinfections there is a very great difference in the different labs -- but a real LLMD will treat the person and not the lab results.
It depends a lot on the symptoms and coinfections as to whether oral or IV meds will be needed. And of course the cost and insurance restrictions are other factors to consider.
Unfortunately many docs do not consider coinfections -- this is another obvious advantage to finding an LLMD. Hubby was clincally diagnosed with Bartonella 3 years after he got sick -- has had some treatment, but just recently (6 years into illness) got his first positive Bartonella test.
Glad you found LymeNet. Lots of friendly helpful people here.
Ask all the questions you need.
Bea Seibert
Posted by elle108 (Member # 11730) on :
Thanks Bea, Dana and LYMETOO...I'll let you all know how it turns out. Called te office today (15 days after the Spinal tap) and was told the results of the tap and bloodwork arent all in...have an appt in 2 more weeks to go over results...hopefully, Ill have her in to see the LLMD by then...
Posted by elle108 (Member # 11730) on :
Got her an appt with an LLMD, Dr. S in New Jersey for next week. The ID follow up appt isnt until the week after. I had such a positive experience with Dr. S's office...the receptionist was very, very nice on the phone. SHe also told me that he will send everything to Igenex labs...including tests for co-infections...the cost is a little scary, but realistically, this is feels like the right move. Thanks to everyone here for poinitng us in the right direction.
![[group hug]](graemlins/grouphug.gif)