posted
Saw LLMD last Friday, doubled my doxy dose to 200mg twice a day. Original Labcorp test neg for Lyme, Babesia and + for RMSF only IGM. Doc says symptoms more like Lyme brain fogg, cognitive word finding issues, head and neck soreness, etc. Is it OK to be on ABX when having blood drawn for Igenex? My tick bite was 5/3/10 with first symptoms on 6/18/10, no rash or fever. Started doxy 200mg/day on 7/28/20 and continued until dose was doubled last Friday. What is the likelihood of full recovery since it is still pretty acute? It's hard to see some of these neurological symptoms just disappearing.
Posts: 239 | From NC | Registered: Aug 2010
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
If you call IGeneX they will tell you they recommend being off of antibiotics for about 14 days (10-14 I think is the standard) before drawing blood for your test.
Otherwise it could interfere with the results and cause false negatives/fewer bands.
You really shouldn't have to be retesting anyway, as the CDC says Lyme is a clinical diagnosis. That means that testing is NOT NEEDED, and is not to be used to rule out Lyme infection if it is negative.
The CDC acknowledges that Lyme tests are very poor, and lack sensitivity, among other problems. The problem with testing comes down to a large percentage of false negative results.
John Hopkins recently did a study that found Lyme testing misses up to 75% of positive Lyme cases.
If your LLMD is depending on you getting a positive Lyme test to treat then you need to find a new LLMD that is ILADS-based.
Personally, in my non-medical opinion, I would stay on your antibiotics, forget the Lyme test, get a clinical evaluation for possible co-infections, and look for possibly stronger treatment for Lyme, as you already have neurological symptoms, you need something that will get to the Brain and the rest of the CNS.
Yes, neuro symptoms can go away with treatment, but you need proper treatment.
posted
I saw Dr. F in NC, recommended by people on this board. She is using clinical symptoms and already doubled the dose of doxy I was taking. I think she is looking for co-infections b/c she said her treatment regimen and order depends on what I test positive for. I showed her the probiotics I was taking and she said they were fine. I have been taking these since the beginning of the Doxy and i have been fine with it. She felt since it has only been a few months of symptoms and just over 3 months from the bite I should make a full recovery. Fingers crossed and positive thoughts.
** edited to remove that the doctor was in the top doctors recommended by the board. We do not have official lists or rankings. **
posted
rmsfnc...I believe my sister is seeing this same doctor and Dr. F has been the only one to give her any hope. I'd say you are in good hands based on our personal experience.
Also, my sister was off of antibiotics for only 3 days and was very positive on her Igenex test. She called Igenex directly and they told her via phone that she did not have to be off antibiotics.
My son tested positive through the VA Health Department while taking antibiotics.
Everyone responds differently but this was our personal experience. Sounds like you are on the road to recovery!
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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