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posted
Hi all can some some tell me what this actual means- since the results came back today- and i do need a NYC doctor any help? thanks so so much michael
Posts: 1 | From new york city | Registered: Mar 2010
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Keebler
Honored Contributor (10K+ posts)
Member # 12673
posted
- FIRST: If you are already on antibiotics (abx), be certain to also take PROBIOTICS - several times a day, several hours away from abx. This will help prevent a systemic candida infection (yeast) as a result of the abx killing off all the good bacteria in the gut.
SECOND: LIVER SUPPORT is also vital. More below about that.
----------------
Welcome, Mike. Sorry that you are dealing with this.
First, so that I'm absolutely clear: You got a positive lyme test from spinal tap? The CSF (cerebral spinal fluid) tested positive for Borrelia ?
Then, also to be clear: I assume you are experiencing symptoms or you'd never have had that test.
If yes to both of those above, you hit a winning lotto ticket in terms of proof. Yes, you need a doctor. It's not that simple, though as I'm sure you're finding.
What's the doctor who did the LP (lumbar puncture)? My guess is s/he is an infectious disease doctor or a neurologist who ordered the test. Usually, they are not very proactive with lyme and, often, undereducated about it.
GET A COPY OF YOUR TESTS RESULTS FOR YOUR PERSONAL FILE. Order that right away in case something happens to that in your doctor's office, you need your own copy.
You also need to be tested for other tick-borne infections. No LP is needed for those. To be clear for others new here and reading this, no LP was needed for lyme diagnosis, either. It is a very poor test for lyme and very rare that it can capture what it needs. But a positive can be a winning ticket to getting treatment.
DOES THE TESTING LAB STILL HAVE SOME CSF LEFT-OVER? If so, perhaps - just perhaps - they could test that for other tick-borne infections. I'd want an LLMD's advice on that, though.
As you will discover, sadly, lyme is a very politicized topic among doctors. Even with a positive test, obtaining treatment is difficult as many doctors are inadequate and undereducated in this area. Not an insult. A fact.
It is best to find a good LLMD (Lyme Literate MD) or LL ND (naturopathic doctor) who is an member of ILADS or, as we say here, ILADS-educated, in that they know all the science behind ALL the tick borne infections - even if they vary their approach somewhat.
LIVER support and ADRENAL support are terms you will hear often. Lyme is very toxic. That's hard on the liver. So are most medications. Some supplements can help the liver work better and also protect the liver - and the ears. The ear often take a hit with TBD (tick-borne disease) and higher levels of toxins in the body can damage ears. Another reason why liver support is so vital.
HEARING PROTECTION: the toxins from infection can cause hearing damage at lower volumes. Antibiotics can also lower the decibel level at which sound can damage ears. Be sure to wear ear plugs or certified protective muffs even when around a hairdryer, a vacuum, blenders or household appliances.
Ear buds are not advised but the muff kind of headset, on low volume might be okay. Best to avoid headsets unless you need in traffic, etc. The sound impulse is just too near the tender ear nerves.
ADRENALS: The whole endocrine system also gets hit hard so adrenal support is essential. Cordyceps is a medical mushroom and the basic place to start with that. Turmeric is also helpful but you'll find much more in the set of links to follow.
I'd start with Burrascano's Guidelines and order Singleton's book. Even if you are not leaning toward complementary approach, the links for two books there (Zhang; Buhner) often tremendous detail about lyme and how the body is changed by it - and what helps.
With apologies for the length of this list, I hope it will serve as a good reference collection to copy to your computer file.
Best of luck. -
[ 03-13-2010, 02:02 PM: Message edited by: Keebler ]
Posts: 15567 | From Tranquil Tree House in my dreams | Registered: Jul 2007
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Keebler
Honored Contributor (10K+ posts)
Member # 12673
posted
- To find a LLMD, Post over in "Seeking a Doctor" forum:
IGENEX - details about testing for all tick-borne infections. There are some other good labs but, as with lyme, not all labs are the same or do the right tests.
Tests will also not necessarily be enough. You'd need the eyes, ears, wisdom and experience of a good LLMD to assess you further.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C May 18, 2007
Excerpts:
[in speaking of acute cases of just lyme, diagnosed and treated early] " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . .If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
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:
MAKING THE MOST OF YOUR LLMD VISIT -
Posts: 15567 | From Tranquil Tree House in my dreams | Registered: Jul 2007
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Robin123
Frequent Contributor (1K+ posts)
Member # 9197
posted
Hi - just wanted to add that I have heard only about 13% test positive for Lyme via a spinal tap. So you are a rare one.
Posts: 4267 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (10K+ posts)
Member # 12673
posted
- Yeah . . . for the record, you can read more here about how lucky you were (well, all things considered).
It's like fishing. Catching a fish tells you there are fish in the lake but if you don't catch a fish, that does not mean they are not there (but that is what many doctors assume with LP and spirochetes). You caught a fish. With good treatment, your trophy will be health.
I'm also posting this for others who will find this as they search the topic in the future: ------------------
. . . 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: 15567 | From Tranquil Tree House in my dreams | Registered: Jul 2007
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posted
Wow!! How rare is THAT!? VERY VERY rare!!!! I've been here more than 9 yrs and I've never heard of someone with a positive on a spinal.
Yes, please post in Seeking a Doctor to find a dr near you who is experienced in treating Lyme.
-------------------- Do not take this as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops! Lymetutu Have you hugged someone today? Posts: 47402 | From Texas TuTu | Registered: Feb 2001
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Keebler
Honored Contributor (10K+ posts)
Member # 12673
posted
- Michael,
Just hope you found what you needed. Last week, I sent a PM with at least one LLMDs name on it but you've not opened it and it appears that you've not read replies left here for you.
So, I assume you've got a plan and you're running with it. In case you come back, that flashing little note to the left is your message.
Good luck. -
Posts: 15567 | From Tranquil Tree House in my dreams | Registered: Jul 2007
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map1131
Frequent Contributor (1K+ posts)
Member # 2022
posted
I don't recall ever reading someone had a + lumbar? It must of been a false positive, huh?
I'm kidding about the false positive thing.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 3217 | From Louisville, Ky | Registered: Jan 2002
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