lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
The neurologist I went to went over my mri with me. She said there could be anumber of reasons that I have the specs on my brain. She wants to do a spinal to weed out other things. She said the mri was not convincing her it was lyme. Appt with my llmd right after said this group will not recognize lyme as being chronic, but is sending me for some bloodwork for RA, ESR, ANA to see if something else is going on. Does this end.?? anyones neurologist not believe lyme even though it states it in the mri diagnosis?
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Tracy9
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posted
My neurologist is Lyme Literate and I wouldn't really waste my time and energy going to anyone else, since I am positive for Lyme on IGENEX over and over again.
He has successfully treated me and my Lyme has gotten better; now we are dealing with coinfections and autoimmmune disease. I can't waste time and resources on the wrong doctors.
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
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I'm w/Tracy. Don't get spinal either. Do a search here of spinal taps (it's above under the "post a poll" button".
It's not a good marker for Lyme & used ALOT by doctors to say you don't have or never had Lyme.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Neurologists have a reputation similar to Infectious Disease doctors of being deniers of the existence of chronic Lyme.
The spinal tap might find evidence of Lyme in as much as 16% of the people who actually have it, if I remember the number correctly. The other 84% can be told, "See? You never had Lyme after all, besides which, your Lyme that you never had is already cured."
If the spinal tap comes out positive by some rare chance, they will just say, "Oh, there are a lot of false positives with that test." They will say the same about a CDC positive Igenex test, even though those have lots of false negatives and very few false positives.
There is no way to convince them out of their opinion, so find a different doctor who is Lyme literate, if you can. At least listen to your LLMD over everybody else, in all Lyme-related matters.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- How many times do we hear this a week: "neurologist wants to do a spinal tap (lumbar puncture)" ?
No. No. No. Don't hire ignorant doctors, even if they have fancy titles. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- A LP (lumbar puncture/spinal tap) is such a poor test for lyme.
It's like fishing. If you catch a fish in a lake, you know the lake has fish. But if you don't catch a fish, you can't say there are no fish in the lake. You just didn't catch one.
Spirochetes do not just all swim around the spine waiting to be sucked up into a needle. While, once in a blue moon, the needle may withdraw CNS (cerebral spinal fluid) that might contain some evidence of a spirochete, in general, spirochetes hate vibration, light, motion, etc. They will spring away from the action.
While some have no problems, for many, a LP can be very painful and you could have a tremendous migraine for weeks afterward needed someone to care for you, at least for many tasks.
And, they are expensive. Even if you do not pay out of pocket, someone is making a huge sum of money from a test that does not even work to dx lyme. It's a waste of money unless in a life-threatening emergency and they are looking for other reasons. To assess lyme, it's a wasteful exercise in futility.
However, the doctors know this but will use the predictably negative test to DENY TREATMENT.
AND - even if they found lyme the neuro will go by IDSA standards for treatment and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.
Not enough. Go only to doctors who are truly educated about lyme and all tick-borne infections - and how they impact a person at various points in time after transmission.
. . . 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.
. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Please listen to Keebler and others here.
Befor I was dxed with lyme I practicly lived at the doors of my Neurologist. He had me on so many different meds to ease my pain in the nerves, and tested me for so many things including a lumbar puncture he had done.
I have a cyst on my brain and he insisted the cyst was the reason for all my pain.
NEVER once did he test me for lyme. He just kept saying NO, NOT POSSIBLE.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Reading back over your post, you wrote:
" . . . She wants to do a spinal to weed out other things."
WHAT other things, precisely? Ask for a list. Call her office now and request that list. Say that you need to give it some consideration but need more information before making your decision. Chances are that list is short, if really a list at all.
(Hint: if for high cranial pressure as is often a term they use to justify a LP, high cranial pressure can be caused by brain infections such as lyme. Treat the infection and the pressure, inflammation and swelling diminish).
Now, there are some conditions and times when a LP can relieve cranial pressure but you better darned well have a LL neurologist on board so they know, exactly and totally, all the considerations.
Unless you are in danger of dying in the next few days, just what, precisely, are they looking for? What can be worse than lyme, anyway?
What does your LLMD say about the LP ? I assume since your LLMD said that the neurologist would never recognize lyme as being chronic. So, why are you invested in the neurologist?
So many of us for so long held them in high esteem. And, for some conditions, some neurologists, yes, their knowledge can save lives.
But, when it comes to lyme, this is a whole new planet. The old ways of thinking no longer apply. An otherwise brilliant neurologist who is not LL is not at all good for any lyme patient. as lyme just has far too many ramifications. It changes everything in deep and profound ways.
Yes, of course, there are many other infections that many lyme patients deal with. But a LP is not necessary for most of those. Here's how to find specialty labs for other chronic stealth infections (note that none require a LP):
=================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
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posted
My llmd thinks I am just stuck because I have previously responded quicker than now on rocephin, thats why she put me on flagyl. Alot of symptoms cleared up, except the joint pain and depersonalization, which has previously cleared up on iv treatment (zithro and rocephin). She is sending me for ANA, RF, ESR, CCP and CRP cause its been a long time since I've tested for those. The neuro was sending me for tests to be done at her lab. MY llmd gave me a script to go a lab covered by my insurance for the tests she ordered.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As far as I can tell by your past posts, you have been treating just since this past January?
If so, hold on to your hat. There's a ways to go yet. In the documentary, "Under Our Skin" the park ranger only began to feel better after the 3 year mark. Then he got better and better from there. That seems to be a typical measure for many.
Still, along the way, I hope you can enjoy some beauties around you in nature, people, arts, love. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I've been treating since 2003, current time on iv this time since January, this is my 4th time on iv. The most I did was 10 mos., then break when symptoms subsided, 6 mos, then 7 mos. and now 6 mos again now. I think I screwed up cause I even stopped orals back last April. I guess I have to learn the difference between remission, maintenance and thinking it's over for good. Thanks - I try.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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I agree with the above advice to avoid an LP. It is not required to diagnose MS, nor is it a good test for Lyme. It is invasive and carries associated risks.
I did get one, at the urging of an MS neurologist who was not sure what to make of my 7 or 8 non-enhancing white matter lesions.
After the LP came back negative for both Lyme and MS, I was just told to repeat my MRI every six months and to "pray" that it was not MS.
Back then, I knew very little about Lyme, and the Lyme-negative CSF only thew me further off the trail.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
You are doing the best you can! Your treatment course sounds exactly like my husband's. He always stops as soon as he feels better....I always tell him give it longer considering he has had Lyme and company for 12 years now. Right now he is off meds and I'm just waiting for him to get sick enough to start them again. He stopped and his LLD doesn't even know it.
I like the way you worded your last line. I'd like to save that!
Keebler, such EXCELLENT advice. This is a very worthwhile thread rich with great advice and information, though I'm so sorry for what you are going through, Lyme in P. I wonder if you could try another LLD? Maybe it's time for a fresh set of eyes?
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
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