posted
Would you trust a negative IGeneX test for babs?
Would you trust a normal SPECT scan to rule out BB in the CNS?
Thanks!
Posts: 261 | From San Mateo, CA | Registered: May 2005
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
igenex does not do pcr testing . that is the usual form for testign for coinfections....I would never test ANY form of testing for any form of lyme disease to be accurate. YOU CAN ALWAYS Have false negatives..always.
treat by clincial diagnosis . that' means by symtoms adn any good llmd will do that,and not go by testign.
If you have babs symtoms treat them. period
lisa
[This message has been edited by lla2 (edited 09 May 2005).]
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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Lisa gave you good advise abt babs treatment, it would be a shame to not treat, and not heal based on a bad test...
As for the spect scan, I had a "normal" reading, and have signifigant CNS involvement. My LLMD's office said some results are not read well, or specific enough... They were really surprised by my results, and expected a lot of damage, but they also said they have seen that before...
Hope this helps....
As for picking a LLMD, I would go with the dr who is willing to treat me as an individual, and look at my whole health and wellness, not just my infection....
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Lisa, you're incorrect. Igenenex does do PCR testing of all of the co-infections. I had the tests done there, so I know. I had PCRs of both babesia microti and Wa-1.
As far as the tests, my LLMD told me that the tests for the WA-1 have an artificially high cut off on the titers (not the PCR), so Igenex does not consider them very accurate. Too many false negatives.
The test patent is held by UC Davis, so Igenex can't do anything about it.
Also, there are 13 strains of babesia, and tests for two. So, it is entirely possible to have the disease, and not show positive.
As far as the spect, I am not as knowledgable about that. BUT, I would imagine that the SPECT would just be evidence that there is no infection in the brain. Which is good, but it doesn't mean there is no infection anywhere else.
I would go more by symptoms, and response to treatment. If you have the most common symptoms, it should seriously be considered.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
To learn more about brain SPECT go to www.columbia-lyme.org You can read some info there, and watch Dr. F's slide presentation. It is very informative.
Tina
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Did you do Igenex's fish test? I hear it's good, but it was flasely negative in my case (twice). I did the Fish for Microti. Though, I live in the East..I suppose WA-1 or any of the dozen other strains could be the culprit.
See how maddening it is? Tests can be tools, but not very reliable ones. Doc J, the pediatrition with 7000 kids with TBD's under his belt..runs lots of tests over and over, but leans solely on none of them, it's all part of a bigger picture.
Do you have anemia? Dark urine? High eosinophil counts? Stiff neck? Headache? bruise easily? Muscle aces? Low grade fevers?
PCR testing for co-infections is proof positive if DNA is found.
A negative result means next to nothing, tho..becuase it's like going fishing. The DNA must be present in the blood sample they take that day.
They are good to run continuously, if insurance will cover that you want PCR run by MDL (Medical Diagnostics Lab) in New Jersey..they are the best for this test, repeated PCR's could turn up an infection down the line that you would do well to know about. But, this test rules out nothing. (unless MAYBE you had like 1000 negative PCR's in a row? lol)
The SPECT measures hypoperfusion to the brain. There are specific patterns of bloodflow (patchy hypoperfusion) which are exclusive to Lyme disease.
Like many things, accuracy of the test depends allot on where you got the SPECT, and who reads it.
The three LLMD's treating myself and the kids only use two options for an accurate reading of the SPECT:
1. Doc V.H ..scan performed at Columbia in NYU
2. Doc K (neuro) in CT reads the pics himself, when done at Middlesex.
If you got your SPECT done or read anywhere else, I wouldn't trust it to diagnose hypoperfusion caused by Bb in the brain.
If you got it at these two places, I would be fairly confidant that at this point you do not have hypoperfusion to the brain.
I wouldn't think it would totally rule out BB in the CNS, and certainly you may want treatment to avoid it getting to where you did have a positive SPECT.
Do you have neurological symptoms off Doc B's list?
Mo
[This message has been edited by Mo (edited 09 May 2005).]
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Denise - not sure where you are but I have had two SPECT scans and in California (Northern) California Pacific Medical Center Dr. B is very knowledgable about reading the scan and lyme disease. I wish mine was normal they are both bad and one year apart. BUT don't hold fast to positives, negatives, normal, abnormal - this Lyme and I think it is all just a gamble when it comes to tests. Although, I always test positive (thankfully for my insurance) but I know lots of people that have it and come up negative.
Posts: 152 | From On Horseback | Registered: Mar 2005
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posted
If I were you I would try mepron and see what happens. Do you need a positive on babs for the insurance to cover the medication??? Remember these test are not conclusive.
Posts: 983 | From The sky | Registered: Feb 2005
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posted
Thanks for all the advice. It's going to take me awhile to take it all in - Lymebrained, you know - and read the Krouse article.
Mo, I did have anemia 7 years ago. I haven't been tested lately but they say by the size of my RBCs that I probably don't. Worth a test, I'd say. I have a stiff neck. Have had muscle aches but they've subsided after a round of oral doxy. I've been off abx for over a month waiting, first, for my liver to recover from the doxy and, then, for my body to recover from an allergic rxn.
Maybe the Krouse article will tell me, but I was wondering if babs can hide like Lyme. Or if antibodies are being measured, in which case my battered immune system wouldn't be able to mount much of a response.
I had a negative WA-1 Antibody from IGeneX and a negative Babs FISH (RNA) also from IGeneX.
I'm going to print the Krouse article so I'll be more likely to read it.
Thanks again to everyone.
Posts: 261 | From San Mateo, CA | Registered: May 2005
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posted
Yes, babs can hide. It hides in the spirochetes. Many people test negative at first, then after Lyme is treated, the babs shows up on the tests.
I'd just skip all that and get treated. Do a trial run of mepron or artemisinin. You'll know soon enough then!
My babesia test was borderline, but I herxed from here to Mars and back on the meds!
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