jsch said...
Hi Jackie, I guess because in early stage lyme the bacteria might not have migrated to the brain yet? Or maybe the blood/brain barrier takes time to cross? I'm not sure about that last one. I know certain antibiotics can't pas the BBB easily unless you have meningitis, but I doubt a bacteria like borrelia has any trouble getting to the brain. But I've had the infection for at least 2 years now, so I'm pretty sure it could have infected my brain by now. I just don't know what to believe anymore. My cognitive difficulties, anxiety, depression all point to it being neurological.
I might be getting treatment at the lyme specialist clinic in Amsterdam where they suspect neurolyme, but I have my doubts about their competence. They believe in Post Treatment Lyme, not in Chronic lyme. And they will only treat with IV ceftriaxon once they have a confirmation that it's infected the CNS. With an accuracy of less than 9%, it's not promising. There are no LLMD's in the Netherlands as far as I know. It's a public healthcare system which is far behind Germany, Belgium and the US when it comes to lyme treatment. It's so frustrating. That's why I've traveled to Malaysia where my mother lives to start treatment there. The ID specialist has started me on oral Doxycycline, I'm one week into treatment.
Did you try posting the subject of " LLMD in Netherlands" and see if anyone has someone to recommend?
I am aware of one LLMD in Northern Germany if you want to email me.
All those symptoms you mentioned could be bartonella or other coinfections which makes a LLMD with the experience all that more important for treatment
Sorry you are having trouble finding treatment. Many people here in this forum can relate.