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Posted 6/25/2010 4:19 PM (GMT 0)
Has anyone had a Lumbar Puncture and got a positive Lyme diagnosis? 

Also, has anyone tested for Lyme more than once, if so, did you get positive results on both the IgG and IgM? 

Does anyone know what it means to test only positive for the IgM?   I tested positive a year apart, only on the IgM (band 41 and band 39)  I have never showed any positive bands on the IgG...Now I'm questioning if I really do have Lyme, especially, after being treated with doxcy 100 mg on and off for a year I still have symtpoms.  

From reading I gathered a positive IgM is a new infection and a positive IgG shows you have been exposed.  It is my understanding that I should begin to get positive IgG bands if I have Lyme?  I guess I'm not understanding why I continue to only test IgM positive after a year.  I feel worried that something is terrible wrong with me.   

Should I get any other tests done that could possibly cause a positive IgM?  I'm so confused. 

 

Posted 6/25/2010 10:51 PM (GMT 0)
Here are my experiences with Lyme tests

2 tests at Quest Diagnostics (positive 41, 38)
One negative test from Kaiser
One from IgeneX (positive 41, 38 igm) (and all but 4 positive for igg!!!)

Just had a lumbar puncture done last week... (to satisfy my insurance doctor)
I will let you know what the results are...

I recommend getting a test from IgeneX or another lab skilled in diagnosing lyme...
I only did the spinal tap to satisfy the curiosity of my Lyme ILLITERATE doctor...
Posted 6/25/2010 11:19 PM (GMT 0)
That is quite a serious test to go through to "satisfy your doctor's curiosity." From all the research I have done and reading here, that test if often negative when Lyme is actually present.

Posted 6/25/2010 11:54 PM (GMT 0)
My neurologist had me do a lumbar puncture this past January because of my severe neuro symptoms. I have had four western blot tests this past year and have had positive results on all occasions. The strange thing is that on some tests the IgM was positive and others the IgG was positive. I seem to have received different results from different labs. None of the tests were sent to IgeneX.
Posted 6/26/2010 1:08 AM (GMT 0)
I did have a lumbar puncture done this past Monday...that is why I was inquiring. I need to get well, so out of desperation I agreed to do it. I don't feel very hopeful because I keep hearing that it will come out negative. Why oh why do they want us to go through such a painful procedure if the results are poor. My neuro wanted me to get this done...if positive he can get me IV treatment. Atleast he wants to help me...just can't unless test is positive.

I don't have a llmd right now...been trying to get into see one, but is seem futile because no one seems to want to give me an appointment . I guess I'm doomed..I feel lost. I have written letters to three docs and no response. I don't understand why I can't get into see llmd.
Posted 6/26/2010 2:24 AM (GMT 0)
What the results of the lumbar will show is if lyme bacteria have moved into the central nervous system. I was grateful for the test. It was the only thing which convinced the doctors ( not LD specialists and limited to CDC procedures) to give me one month, and then after 3 months of a lot of begging, a second month of intravenous ceftriaxone. The procedure can be scary, but not necessarily painful. Just make yourself relax.

I've been reading a lot about the ammonia toxins which the bacteria create. The theory is that it is those toxins which cause body pain, more than the bacteria themselves. If I'd known then, I would have searched out detox procedures right after the antibiotics. Perhaps using them then would have eliminated a lot of the on-going pain. -- No way to know.
Blessings and hugs,
Ginnia
Posted 6/27/2010 2:09 PM (GMT 0)
My lumbar puncture results indicated possible MS with 3 oligloclinal bands. I now have to do periodic MRI's to check for lesions however, my neuro believes the oligloclinal bands are a result of my past serious Lyme infection. My test also revealed lympocytes, killer T-Cells in my spinal fluid which are not suppose to be there because of the blood brain barrier. My neuro believes that my immune system is overactive and is causing nerve damage resulting in my severe neuropathy. He has recommend IvIg treatments to reset my autoimmune system. For now, I'm deferring this treatment because I'm currently working with a LLMD treating with high dose antibiotics. I spent months trying to get an appointment with a local LLMD, I finally ended up traveling out of state to see a LLMD who would see me right away. You should make it a priority to get in to see a LLMD.
Posted 6/27/2010 2:20 PM (GMT 0)
Thanks betterhealth

I'm trying desperately to get into see a llmd. I have faxed letters and records...It seems like I'm just sitting here tapping my fingers waiting for a response. At this point I don't know what to do. In the meantime I have been off of the doxcy 100 mg twice a day for a couple of months now. Slowly I'm deteriorating...a lot of my old symptoms have returned. I feel as though I'm being attacked.
Posted 6/27/2010 3:34 PM (GMT 0)
3whiteroses,

I can totally relate, I told the ER doctor last year that I felt like my body was being attacked. I also deteriorated significantly after being off antibiotics for five months. Hope you get in to see the LLMD and back on treatment soon.
Posted 6/27/2010 5:46 PM (GMT 0)
I have serious neurological issues that I'm convinced are caused by the Lyme disease, including vertical double vision, vertigo, brain fog, "scrambled" speech and typing (swap letters when I type), peripheral neuropathy, radiculopathy, etc etc. But my brain MRIs were clean, my SPECT scan was normal, and my Lumbar Puncture was negative...perfectly normal. My spinal MRIs revealed some DDD (bulging disks touching nerves), but nothing else.
Posted 6/27/2010 8:55 PM (GMT 0)

nasalady said...
"scrambled" speech and typing (swap letters when I type)

What do you mean by "scrambled" speech?

I have been swapping letters & even whole words - both in the spoken & written word for about 1 1/2 years now!! My daughter thinks it's funny - in a weird sort of way. rolleyes I just get really frustrated when I do this. Another thing is sometimes it's only for a short while & other times it can last for days.
I was afraid it was just me!!

Thanks for posting that nasalady!!! smilewinkgrin
Posted 6/27/2010 9:21 PM (GMT 0)
Hi Traveler,

Yes, I do the same! That's a good description of "scrambled" speech....I also have something I call "clumsy tongue" where I'll be trying to talk and it feels like my tongue is too big and I accidentally bite my tongue when I speak! It was really awful when these things started to happen during the college-level classes that I used to teach!

JoAnn
Posted 6/27/2010 9:36 PM (GMT 0)
Okay - now you ARE describing me!!!!
Fortunately my hubby & I have found ways to laugh at me when I get bad!! Hubby & my daughter are the only one that can understand what I'm trying to communicate when I get going!!! Talk about lots of frustration!!! Although I do have to say, that I have "created" quite a list of 'new' words!!! (Giggle!)
Posted 6/27/2010 11:50 PM (GMT 0)
Relative to neurological problems, this a link to an interesting report.  It was linked on the boards here .. umm..   first of the year I think.  So for those that didn't see it

http://cait.cpmc.columbia.edu:88/dept/pi/nyspi/LymeDisease/documents/Fallon_Inflammation-and-central-nervous-system-Lyme-disease_2009.pdf

" ... the presence of persistent organism directly in the CNS however may not

necessarily be required for the induction of cytokines and sickness

symptoms as research in other animal models has demonstrated

that peripheral inflammation alone can trigger the brain cytokine

system via afferent neural pathways from the periphery to the CNS"

Not necessarily fun reading ... but interesting that it's theorized that cytokine activation from peripheral inflammation can cause CNS problems and may be responsible for a lot of refractory symptoms.

 

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