hi Martin
what i am trying to say is that even if your case was not strange - there is no good evidence that once a person has tested positive for lyme antibodies - later repeated serological testing has any usefulness in telling a person if lyme is still making them ill or not
(this is recognised as one of the major challenges in lyme treatment and diagnostics - ie is lyme gone/ when to stop treating)
lyme antibodies can be present or not present in people with chronic lyme and can be different at different time points ( many studies show serology is falsely negative in around 50% of cases - western blot bands often do come and go over time)
lyme disease does not follow the normal IgM early / IgG late rule for more common acute infections
once a person has lyme - like many infections our bodies may never fully eradicate it - and instead it may remain at a low level - more or less under control by our immune system - but in a disease where the immune system is effected - what antibodies are present in this case may be variable
LTT can be negative even wile serology is positive - especially in cases where NK populations are low /or low general NK cell intrinsic activity / or other immune dysregulation - all common in lyme
(e.g. my LTT was negative - despite positive ELISA )
in these circumstances its possible for LLMD's / Patients to test until they find a result that agrees with their prevailing theory eg Lyme is gone / lyme is still present
PCR testing of tissue samples may have some utility - but sensitivity is also mixed - blood v poor - skin rash biopsy better - or synovial fluid in arthritic joints better
a few labs have new technology coming through that loos promising
*T-Labs have a immunofluorescent tag via microscopy of blood for borrelia that looks promising - but i suspect sensitivity is still an issue as lyme is rarely in the blood
*Galaxy are developing / may already have a lyme antigen nanotrap test - which also looks promising in terms of sensitivity
overall symptoms pattern is probably the best guide - but as you know there is considerable crossover with CFS
for lyme - things that have high diagnostic differential value are peripheral neuropathic signs
in particular
--migrating pain of any type - nerve, muscle, joint, bone etc
--burning, tingling numbness, stinging, skin hypersensitivity to touch/heat etc
see papers by Horowitz et al
therapeutic trials are another viable route for differential
=antibiotic trials with strong antibiotics for lyme may provoke herx like reactions in long term infection
=recently many of us have experienced flares in symptoms with various biofilm agents - esp if combined with abx - eg xylitol, lumbrokinase - which again would lend evidence to chronic infection as cause
co-infections or other species of borrelia are also a possible cause for ongoing symptoms ( eg TBRF, bartonella, babesia are common ones ) again testing is problematic - in a highly asymmetrical way
false negatives being the main issue for a variety of reasons particular to each species. bartonella seems to be a factor in ongoing illness in many with ongoing symptoms on this board - and this has perhaps the lowest sensitivity in serological tests of all of the co -infections whilst being one of the most prevalent in ticks and biting arthropods and also in pets and livestock, so odds of exposure are high.
overall - its worth noting there is around a 5:1 ratio of the probability of false negative to false positive results in serological lyme testing - which should factor into any interpretation of positive or negative results
Post Edited (Garzie) : 5/25/2022 4:31:20 AM (GMT-6)