Reply to 18 y.o. DD's mysterious brain ailment, advice please

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[quote=Anonymous][quote=Anonymous][quote=Anonymous]I don't have time to read all the replies but I agree with all Pandas/Lyme statements. Testing is SO unreliable and [b]infectious disease doctors do not generally believe in those diseases or their effects[/b]. We are dealing with Lyme and it is exacerbated by mold, EBV and other diseases. Plus Lyme late stage is almost always a combo of infections, not one.

With your DD's symptoms, it is unlikely she would show up positive on testing even though she may be infected.  You may find she relapses because she hasn't been treated. THese things can wax and wane but come back and are often more severe/new and crazy symptoms as time passes.

One way to see if it's a bacterial infection is to notice what happens if she ever has to take a broad spectrum antibiotic. Often kids will all the sudden be "well" again or they will crash and burn as the sudden die-off of large numbers of organisms occur and their bodies can't process debris out fast enough.

Look here for more info. http://www.childrenslymenetwork.org/children-pans-pandas/

Good luck and keep at it. It's likely she's not out of the woods yet but fingers crossed it was viral and it's calmed down. I highly recommend like you suggest she take it easy or take a lighter load, start at community college etc. [/quote]

And there's a reason for that.  Science does not support the existence of these so called diseases. (Not Lyme itself, this chronic Lyme phenomenon)[/quote]

I am the pp who just posted to recheck for Lyme.  I haven't been diagnosed for 3 years, and after that even infectious disease Dr. told me I am clear of it. Yet, I have no other explanation for even now having fog in my brain feeling, losing my perfect vision, being fatigued beyond anything I evre experienced. I got 21 days of antibiotics and they claim I am clear and all of these are side effects and me getting old. I am on array of medication of back pain, joint pain, migraines, allergies, all I know if that it all started after tick bit me and I didn't notice or got treated for three years.  No viral infection goes without me getting really sick. My symptoms sound a lot like what OP is describing and yet doctors are making me sound insane. I am from Europe and going there this summer and many Drs there consider that treatment must take at least 6 months or more, so I will seek advice there, as I am getting nowhere here.[/quote]

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