posted
Got negative results today for a blood PCR test from my LLMD. He is still convinced that I have it based on my symptoms and history of Erythema Migrans rash.
He said that it is more than likely hiding out in my central nervous system since most of my probblems are neuropsychiatric.
I'm going to ask my regular doc for a referral to a Neurologist, because my neurologic problems are out of control. I shake pretty badly, my muscles twitch constantly, my balance is way off, and I can barely use my hands.
Not to mention MANY psychiatric problems that I DID NOT have prior to the tic bite.
I'm going to ask the neurologist for an MRI and a lumbar puncture to rule out other causes like MS. I want to ask him to do a lyme PCR test on the spinal fluid.
Would that test be 100% accurate, or is there still a chance of a false negative like there is with the blood PCR or Western Blot?
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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posted
There is no 100% accurate test for Lyme. Nothing even close.
You had a tick bite and an EM rash. You have symptoms of Lyme. Why are you still looking for more proof?
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
I'm looking for more proof because he said that IV antibiotics cannot be justified until I have a positive test. He says anything that will pass the blood-brain barrier will have to be through an IV. I need to kick this thing where it's affecting me most, which is in my brain!
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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posted
Spinal fluid pcr misses most cases and is not recommended routinely by lyme docs. There really is no 100% accurate test.
Not sure why IV antibiotics not justified. Is your doc saying that insurance won't pay without positive test? Good lyme docs do not need a positive test to treat with IV, but insurance might demand it. Your history and symptoms are a better indication of whether it is lyme or not. And psych problems are sometimes bartonella instead of lyme. This can be gotten by a tick or by other means. One tickbite can give you multiple germs.
If you want to go to a neurologist, get a referral from lyme doc. Otherwise it may be a waste of time. Most neurologists don't know anything about lyme.
Seems to me your EM rash is proof enough.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
He didn't clarify whether it is the insurance that will need a + test or if it is him that wants it.
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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posted
I have read that PCR tests are only about 6% accurate. What that means is that you would need to repeat the test 20 times to prove that you did not have lyme. Doesn't matter if it is blood or spinal fluid -- both give many many false negatives.
Ask the doc if an abnormal SPECT scan would be sufficient to justify IV antibiotics. Your odds are about 70% that a brain SPECT scan would be abnormal.
Have you had any treatment at all? If you had a few bands show up on a Western Blot a trial of oral antibiotics for a couple of weeks might get you a positive test. No guarantees, but some people get lucky that way.
The truth of the matter is that even if you get the positive test insurance will probably only pay for 1 or 2 months of IV's at the most -- most likely that will not be nearly enough to get you well. So then you would have to switch to orals or IM shots unless you could pay for the IV's yourself.
A better option might be to start treatment with orals and later switch to IM shots and then do the IV's if you do not respond to orals or if they still seem necessary.
In hubby's case the 2 months of IV Rocephin he did 7 years ago (his first antibiotic) only reduced his symptoms maybe 25% and the improvements started going away within a week. Many people need to treat coinfections first before treating the lyme aggressively.
You won't know how you respond to orals until you try. At 400 mg oral Doxy will cross the blood brain barrier. And Levaquin and Rifampin for bart definitely cross the blood brain barrier.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
P.S. If it is the doc who requires a positive test to treat then it is time to find another doc -- he is not an LLMD.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Jennifer, who is your LLMD? (first initial)
It's very possible that what he's told you has just gotten jumbled in making its way onto the forum here, but some of those things sound odd for a LLMD.
I can't believe an ILADS doc wouldn't treat with IV abx when there's a history of a tick bite, EM rash, and symptoms.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
No, Spinal Taps are not recommended according to the Burrascano guidelines:
Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy.
Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment.
When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present.
It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children.
Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency.
MAGNESIUM (required) Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition.
The best source is magnesium L-lactate dehydrate (�Mag-tab SR�, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on �cal-mag�, calcium plus magnesium combination tablets, as they are not well absorbed.
Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
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