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

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[quote=Anonymous][quote=Anonymous][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]

Were you asymptomatic for three years, and then your symptoms flared?[/quote]

No, I had symptoms but they were so out of place and I didn't know about Lyme disease, I thought people were exaggerating the dangers. I had a rash, they gave me some cream for it, then I started getting headaches and eye floaters(like a lot non stop), then I started getting foggy brain, muscle aches and pains, increased migraines, constant congestion and sinus infection, I thought my allergies are flaring.. I went to eye doctors, I went to ENT, I went to Orthopedic, pulmonologist, I went to allergy Dr. I thought I was having the flu, sinus infection and I was... My fatigue was attributed to breathing problems and allergies. So all the issues I had occasionally before were multiplied. I was on prednisone, etc...I went from not never being a person who can fall asleep and sleep for a long time to a non stop sleeping, going to bed at 10pm and waking up after 11am on the weekends, being a zombie during the work week.  After all these doctors, I asked my nurse practitioner to test to Lyme, she didn't think of it, and came back positive in over 5 strands. They gave me 21 days of doxycycline and said I was fine now, and I was much better for a while, and now I am not, I know that any time I get too much work, too tired, I will get sick.  I am having a really hard time with how fast I deteriorated from a very active and healthy person to fatigued, every single bigger task is possibly going to make me very sick person.[/quote]

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