posted
Went to see my neurologist today for the first time since lyme diagnosis. He was surprisingly (may I say refreshingly?) cooperative. Ok, so you have lyme...here's what we should be looking into.
He's going to talk to Dr. E. about whether or not to do a spinal tap, to see if it's in my nervous system. I think that's sort of a "duh", what with the neuropathy and loss of sensation coupled with the numbness and cognitive difficulties.
At least he didn't just arbitrarily order the test, but he did express concern about neurological lyme being left untreated. I'm sort of confused atm...isn't the Ketek/Cipro/vits I'm on treating the lyme overall? Or is there something I'm missing.
Other things - Going in for another sleep study to see how bad the sleep apnea is to help determine treatment plan, since it is apparent from my study that there is a problem with my breathing.
He also noted that my brain pattern spiked towards awakening 533 times over a 6.4 hour sleep period. I woke fully 30 times. He thinks it might be the neuropathy pain causing the frequent arousals. They definitely were not all associated with the apnea, which appears mild.
And that was a GOOD nights sleep where I'm concerned. NO wonder I'm not getting enough rest!
I told him that I began easing off the Cymbalta. He understood my concerns with staying on the Cymbalta for too long and SSITs in general. Going to go onto Topamax for the neuropathy next. So next, I research that.
I'm really confused about his "can't let it go without treatment" comment, though. Any input from the folks with neuro-lyme?
posted
spinal taps are done to rule out MS, it does not rule in lyme or neurolyme. the only help with a tap is that the bb's are in a greater concentration in spinal and synovial fluid(joints) therefore a better chance of positve pcr. if you already have a positive dx of lyme ,a spinal tap is dangerous and unnecessary unless the neurologist suspects MS. docdave
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I will never willingly have a spinal tap ever again...
Below is from a previous post here but I can't find the link to it.
"Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP).
The medical literature is quite emphatic that MRI does not reliably distinguish between MS an LD because there is too much overlap in their supposedly distinct appearance and location of plaques.
Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination.
In Miklossy's study above, senile plaques stained avidly for Bb spirochetes. Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that LD is causing MS! His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of CNS tissues).
Dr. Coyle has documented the presence of antibodies to Bb in MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of LD. Both MS and LD are associated with sinusitis (Lancet, 1986).
Dr. Leigner has reported a case of LD which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of LD. The symptoms of both LD and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with LD, who previously had been identified as MS, responded to antibiotic therapy. "
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I suspect the reason he made the comment about untreated neurolyme is that "the establishment" says severe cardiac and any neuro Bb should be treated with IV abx. You're on orals, no? That's my suspicion. Had a similar comment from one of my doc's recently and that's where he was coming from.
Also, I was diagnosed by a positive spinal tap for Bb. It isn't the norm, but there are those of us here for whom this is true. I've had bad taps and not-so-bad taps (about 7 or 8 total, can't remember the number any more). None of those taps and their side effects (when there were some) have out-paced the headache from the meningitis or the chest pain from the cardiac stuff I've had. Your mileage may vary.
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I was SELF treated by a neuro duck in 2001. I taught HIM everything he knows about Lyme. He would NOT treat the obvious Neuro lyme until spinal tap results.
I am lucky that my CSF was + for Lyme antibodies. Not many are NOT. If it had come back neg---then he wouldnt have done IV which eventually gave me 4 years of no sx.
I agree with above---only do the spinal if you are ruling out other illnesses.
But if the doc wont treat aggressively without---you might want to find another doc?
I had major complications with my spinal tap...leaked spinal fluid (internally)for days until brain was sitting on skull---LONG story--they did a blood patch, but the pain was so severe and so insane--I would NEVER do one again.
If you can avoid a tap, avoid it.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Lyme is a disease of the central nervous system.
Whether your body is making antibodies that can be detected by testing is another matter.
Posts: 1572 | From Pa | Registered: Jun 2001
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I think the neurologist is willing to bow to the LLMD's decision, just judging from how the conversation went. I think your right about his reasoning, durameter. I am on oral antibiotics.
I'm tremendously reluctant to do the spinal, since I already have a diagnosis and I am responding very well to treatment. Anything involving a spinal tap scares me!
I guess I'll see what he says once he's confirred with Dr. E., then see where we end up. If he pushes for the spinal anyway, I'll be heading for the door...reluctantly, as he's been quite good to work with so far, but out I'll go.
The information about Bb and MS is very interesting. I've already decided that chronic fatigue is just another name for undiagnosed lyme. I would not be at all surprised to find that MS has it's roots there as well. Considering how slowly the medical field is delving into this disease.
Did your sleep apnea test show that you were also getting "O" DELTA 4 sleep where the body heals the injuries & you feel refreshed; mine did!
Did you get a CPAP machine; full mask or partial. My friend gave me her late husband's cpap machine. I bought a new mask, hose, & head gear = $500. It blew COLD air into my face full-time.
So reluctantly I decided to rent one of the newer ones w/humidifier! BUT it too blew COLD air into my face! I fought this 1 month and returned the machine & humidifier to homeward. It was $1,000 for those 2 things.
So since my nose plugs up every night, the cpap is no good, and when I wore it all night; I never woke up feeling rejuvenated! pain in the butt...
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i had a neuro sit up and take notice when i told him my tap was positive also-it was positive in the middle of aggressive orals that seemed to be helping a lot so the llmd didn't want to change to iv or anything else at thhat point. the neuro went on and on-(wierd huh? usuallly they just grunt a little) about "how i could have a pos tap and not get iv???"
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hiya MizMo.
Actually Bb is a fastidious organism and only infrequently found in cerebrospinal fluid...estimates are around 20% of the time in Lyme patients. The more findings of elevated proteins and increased intercranial pressure are unlikely to impress your neurologist.
I had a monstrous headache for several days following my tap despite following every precaution and lying flat for the rest of the day.
Then amazingly, my head was pain free for weeks.
I used to joke with my neuro that my head was hurting again -- would he mind doing another tap? Ha ha.
I already had a +++ IGenex test but didn't know then what I know now and was letting him lead me along down the MS path. Unlike your nice neuro, mine ignored my LLMD, my CDC positive tests, and even furiously jotted down my LLMD's name as if to report him for "overtreating" me (after three months of antibiotic treatment).
Unless your LLMD recommends the tap, tap-dance politely on outta there!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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