posted
my friend was bitten several times late summer/early fall.
he developed typical lyme symptoms, advanced to bell's palsy. all of the pains and neuro symptoms.
he's been getting the runaround by docs, you know the deal "you don't have lyme so i am not going to test you"
an infect disease doc told him it isn't lyme and maybe is parkinson's...the same doc that told me it wasn't lyme after the first (and only, as far as he was concerned) blood test came up "not positive enough to warrant treatment."
anyhow, my friend had a spinal tap. he was told it's negative. the docs where i live are, well...i'd rather live in a city, let's just say that.
so is my friend being further misdiagnosed? i really do think he has lyme. he is a groundskeeper in the hudson valley in ny. lots of ticks.
thanks
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
| IP: Logged |
posted
Spinal taps hardly ever find lyme even in people who clearly do have it. Other tests not very reliable either.
Your friend is in a place with a very high number of cases. He needs to contact a support group there to find doctors who know more than the ones he is now seeing. They are going to let him wait until he has chronic intractable disease that will ruin his life. Catching it early is crucial.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
False negative? About 95 percent of the time!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Spinal taps are NEVER suggested by lyme experts as they are a very poor test. If you see borrelia, it's there - but the sample is very small and borrelia can be there and not be in the sample of CSF captured for the test.
It's expensive and can be painful and have a long recovery time with severe headaches in some cases.
Your friend needs to drop the ID doctor as he is very misinformed.
I hope he can see an ILADS educated LLMD soon. He is lucky to have you as a friend to search out solutions for him.
Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells. The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%).
An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum. The proposed index of 1.3 would be expected to have even worse sensitivity.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I had a spinal tab at Johns Hopkins and it showed nothing. But Fry lab showed high bartonella ,also lyme, my ANA was 3,240. I had blurred vision, could not walk.... I had no problems with spinal tab even without any pain meds ( just one evening headache) but you have to sign that you can die.
I never would do it again, it was a waste of time and was $ 1,900.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
massman
Unregistered
posted
Why is all this testing done when lyme is a clinical diagnosis, not a lab diagnosis ?
IP: Logged |
posted
My spinal tap was negative. My IGENEX Western Blot was positive.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
posted
My LP was neg, and I am awaiting my IgeneX results.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
massman - I guess people really want to have some kind of solid evidence so they know what they are treating. A spinal tap is pretty extreme.
So if it's positive - it must really mean you are ill... but it's not accurate for Lyme as people here are saying.
Lyme treatment is not fun & can go on for years. It's convenient to have a kind of baseline to go by so you know you are actually improving with the chosen treatment protocol. With Lyme - it's not easy to tell if you are improving or if it will last.
It may also have to do with getting insurance companies to authorize payment for treatment.
Clinical diagnosis's are kind of wishy washy in regards to getting people in the medical world to believe you are really as ill as you say you are.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
My spinal tap showed elevated csf protein levels, but nothing more. That proved I was fighting something, but it wasnt known what at the time.
My neuro wanted to do another LP, and I said, no...not a chance (especially after I spent 7 days on my back in pain from the hellacious headaches afterwards.)
From what Ive read, LPs are not overly accurate in detecting lyme. As everyone has already said...its a clinical diagnosis..and usually a serological test (western blot preferred), is used to backup the clinical diagnosis.
Having a LP come back negative for lyme means nothing...
Please seek a LLMD and forget the HMO/PCPs who typically don't know enough about LD to make an accurate diagnosis.
Posts: 514 | From . | Registered: Apr 2008
| IP: Logged |
posted
My LLMD told me that it is only 20% accurate in people with KNOWN neuro-lyme.
I always think about that story on mystery er, where the woman woke up and couldn't walk. She was in the hospital and they knew she had some kind of meningitis, but couldn't find out because the lyme test was negative by spinal tap. Anyway, it was years later that she found out that she had lyme disease.
My spinal tap was negative for lyme, but my western blot was really positive. I also have brain lesions and one-O-band so something is going on in my brain!!
Unfortunately, it means absolutely NOTHING that it came back negative.
Can you elaborate on KNOWN neuro-lyme? Is that based on serology? I've read here and elsewhere that CSF testing is of questionable use in Lyme testing, but I'm still fuzzy on why neuro-lyme in particular can not be reliably tested for by LP.
Thanks.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
quote:"Can you elaborate on KNOWN neuro-lyme? Is that based on serology? I've read here and elsewhere that CSF testing is of questionable use in Lyme testing, but I'm still fuzzy on why neuro-lyme in particular can not be reliably tested for by LP."
Does anyone have an update or additional information they might be willing to share? This thread practically saved my sanity tonight. I'm on the receiving end of substandard care from a neurologist who is blocking care and access to a 1 month treatment with IV ABX because "Negative LP means you don't have neuro lyme. Your positive Western Blot and Elisa are not really relevant."
Thanks again to everybody on LymeNet Flash. This forum has provided invaluable direction through a confusing disease.
Posts: 8 | From New York, NY | Registered: Oct 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As a wise poster here has explained, it's like fishing.
You can put your line into the water and you may pull out a fish. Okay, then you can declare: "Yes, there are fish in the pond."
However, coming up without a fish, you cannot declare that there are no fish in the pond.
Spirochetes in the CSF (cerebral spinal fluid) don't just hang out waiting to be drawn into the syringe. Spirochetes are know for springing away from the action to quieter places. They are not likely to be drawn into the needle. They may be, but absence of them in the syringe does not mean they aren't swimming around in the rest of the spine - or body.
----------
Ultimately, there is nothing that will convince a doctor who chooses not to learn. I hope you can find a good LLMD who is at the top of the knowledge base with this.
Be sure to see the other replies posted for you over at your other thread:
posted
Thank you Keebler for your quick reply. Who knew that Lyme and Epistemology went together so well!
Posts: 8 | From New York, NY | Registered: Oct 2009
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I'm sorry for what you're going through, NYC-Lyme. It's the rule and not the exception, unfortunately.
You might want to also ask this in your other thread (maybe edit the first post?) so that you get more replies to your particular question, rather than the original poster's here. Many people only read the first post and reply, since they have limited mental energy, etc.
To try to answer this briefly here - Neuroborreliosis (neurological Lyme) is not based on a test, but is a clinical diagnosis, just like any other stage of Lyme should be (according to the CDC).
Lyme can invade the CNS within hours. In research with mice, it was able to invade CNS within 12-48 hours.
So to put it simply, the concept of various "stages" of Lyme Disease isn't exactly written in stone - some people have immediate neurological symptoms, and others can take years to experience them. It can depend on very many factors.
Neurological symptoms from Lyme can occur as quickly as a day or two after infection. They are among a huge spectrum of possible Lyme symptoms. There is no acceptable way to "prove" or "disprove", via testing, the neurological aspect of Lyme infection.
Some "lucky" people will present with white matter lesions on MRI (sometimes looking exactly like MS), or abnormal SPECT scans, etc., but they are complementary testing, not diagnostic.
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!
Printer-friendly view of this topic