lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I know neurologist tomorrow is going to request a spinal. I've had Lyme for years and have a lot of psych stuff going on. Does it show up if u have much near/psych stuff. MRI lesions and spec hypo perfusion and this neuro is going to push spinal. Went to her for MRI script and she's not convinced it's borrelia. Have Bart, anxiety, ehrlichia , unbelievable joint pain, but mostly psych stuff. Anyone positive? Know odds are low.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Evidence over the years seems to link MS to a spirochete. However, when we hear about a new spirochete that causes MS, we ignore it, because after all, MS is an auto-immune disease.
Even if you don't have Bb detected this does not in any way rule it out since it's hard to get a positive in CSF and Bb is not the only spirochete to cause MS! Tell your neurologist to rule out a couple more spirochetes, such as:
- Spirochetal myelophora - T. denticola
Hmmm, maybe it would be better if you told your neuro you wouldn't be satisfied unless they used genus specific PCR primers for all spirochetes. Oh wait, that's right, it's not known if cyst forms can be detected by PCR and that's how they may present in the CSF. Scratch that idea.
Of course, they could never meet any of these demands.
Disclaimer: Don't actually listen to my suggestions. I am just sick of medical ignorance.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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anyway if you have lyme then whats the point, so this neuro wont find it and tell you its something else. neuro's dont know anything about lyme anyhow.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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posted
VERY low possibility of finding Lyme. They (ins) can use a negative test result against you.
Then there's the danger of the invasive procedure. No way would I do it...but that's me.
Dr. Joseph J. Burrascano's Guidelines: http://www.ilads.org/burrascano_1102.html ``Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme.
Antibodies to Bb most commonly are found in Lyme meningitis, but are rarely seen in non-meningitic CNS infection, including even advanced encephalopathy.
Even in meningitis, antibodies are detected in the CSF in less than 20% of patients with late disease. Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain,''
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96205 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You have absolutely got to be kidding. Really. And, I'm not mocking you, really, I'm astonished that the neurologist has the stupidity to propose doing a spinal tap. Run. Run now.
You said: "I know neurologist tomorrow is going to request a spinal"
If the neurologist, as you say, is not convinced this is lyme, why in the world are you wasting your time with her? Why, oh, why?
If she does not know that a spinal tap is a TERRIBLE Test for lyme - she likely will have no training in other tick-borne infections.
Again: why, oh why are you even seeing someone who is uneducated in the field?
You know you have lyme, I don't understand what this can accomplish.
And where is your LLMD with all this? Sounds like you are striking out on your own, grasping for some other diagnosis when, yes, lyme CAN cause all your symptoms.
If you are not seeing progress, you may need a new LLMD. One who is ILADS-educated. I can guarantee you that an illiterate neurologist will not be able to help treat lyme.
==========================
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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are, of course, other considerations in addition to lyme - but they do not require a spinal tap. If she is so uneducated about lyme, though, she will likely be uneducated about other tick-borne or chronic stealth infections.
====================
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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- These links explain a lot about your symptoms. Of course, these cover other tick-borne infections as well. Most with lyme have other infections, just as you. ------------------------------------------
Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Thanks - no spinal.
-------------------- 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
- With "high anxiety" you might consider the complications that any kind of porphyria can bring. The "Secondary Porphyria" link is best read first:
PORPHYRIA Thread - along with details about KPU/HPU (Mauve factor) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- And, one more note. Can your LLMD suggest a very good LL psyco-therapist? I'm not talking so much about drugs (but some key ones can help just as some psych drugs can make this worse) . . .
but, with a good LL therapist, you can learn what is the infection, the toxic reaction - or your thought process. You can learn new skills with cognitive patterns. Biofeedback is also a great tool.
You may experience anxiety but there are ways you can stand up to it while the infections are being treated.
And - it would be good to be able to really talk about all this with a trained counselor. Lyme, etc. is a huge burden and our spirit gets crushed in all that. We NEED to talk it out, sometimes.
Oh, by the way, if porphyria is a part of this, BETA CAROTENE is very helpful. It would be good to find a LL therapist who is also literate with porphyria - AND with natural medicine.
Ask your LLMD about a LL ND (naturopathic doctor), too.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also remember:
Parasites (see Gael's posts) I forget her web name
Heavy Metals (See GiGi and Marnie's posts)
and ADRENAL support. -
[ 08-30-2010, 05:47 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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