I was diagnosed with lyme back in 2010. I had Twitching muscles, painful muscles, brain fog, joint pain, malaise, lethargy, false sensations. My doctor at the time clinically diagnosed me.
I suffered these symptoms for 7 years until I suddenly came down with Reactivated Epstein barre. I was bed bound for almost a year. But once I started to recover from e.b. some of the Lyme symptoms started to ease off as well.
I found myself pretty much recovered from lyme,( at first).
Nowadays its' more like extreme brain fog and emotional problems, and depression. I also have begun to feel disconnected from family and loved ones. I believe I might have anhedonia. I am content to do nothing. All my motivation and drive is pretty much gone.
I feel like I'm heading towards Alzheimer's or something. It's terrifying.
Can Lyme migrate to the brain? Is there anyway I can discover if I am still suffering with active lyme?
If you're still reading this thankyou! I appreciate any input!
Posted by Garz (Member # 52095) on :
unfortunately there are currently no tests that can reliably tell if Lyme is eradicated. this is one of the main big unanswered needs in lyme disease management.
as a result we do not know if lyme is ever fully cleared by the human body - or if when people recover, its by getting the bacterial load down, and then the immune system keeping it in check (it does this with many infections - which are lifelong but produce no ongoing symptoms - eg childhood viruses)
there are tests that might give some indication - but interpretation is v tricky.
if you had a CD57+ test done when you were most ill - and it was v low then - but has now returned to normal range - this might give cause to suspect lyme is now under control - but not everyone's CD57+ follows this pattern. some have high CD57+ counts when ill - and other illnesses cause low CD57+.
serologic tests like the western blot could potentially be cautiously interpreted as a positive sign if consecutive tests have reducing numbers of bands or titres - if that occurs along with symptoms reducing. but this is an indirect test and antibody levels are known to be low or absent in persons with chronic infections - or just not follow expected patterns in chronically infected persons - so the utility is questionable
one more option would be to try a therapeutic trial of antimicrobials - like antibiotics that are strongly active for Lyme - or antibiotics with biofilm busting agents(eg xylitol) together
if this produces a worsening of symptoms - you can be pretty certain you still have an active infection
Posted by Garz (Member # 52095) on :
a few follow ups
lyme is known to migrate to the brain in all infected humans and animals - however the amount of damage it does there is highly variable - dependent on other factors such as the strain of lyme and the host immune response.
we read many accounts of people with lyme believing or being told that they have reactivated EBV because they have high Epstein Barr virus antibodies. however, there are multiple papers in the scientific literature showing Epstein Barr and lyme antibodies cross react - and as a result serologic tests ( tests for antibodies) cannot reliably tell which it is. despite this being well documented - few LLMD's seem to be aware - or act upon it - often prescribing long courses of antivirals which may be unnecessary or even counter productive.
a PCR test for EBV should be able to differentiate between a false positive EBV due to lyme cross reactivity - and true replicating EBV
finally - the following symptoms are stereotypical of chronic bartonellosis: muscle twitching emotional problems - esp anxiety, rage, panic pain syndromes depression de-realization anhedonia brain fog
therefore it could well be that you are suffering from this common co-infection - which is driving these ongoing symptoms.
testing is problematic - sensitivity of most tests is generally poor the best tests are by galaxy diagnosiscs - but are expensive.
if you have developed or continue to develop unusual stretch marks - this can be a reliable clue to bartonella infection exposure to animals and especially cats - but farm animals, rodents, wild mammals etc are all risk factors it is spread by many more vectors than lyme - including biting insects, fleas, ticks, lice and even spiders - as well as animal scratches or bites