hey all --

So sorry for not responding to this for over a month. There have since been so many helpful suggestions that I had to print this thread out!

I saw the infectious disease neurologist a week or two ago, and she started spitting out the names of many bugs that I'd not even heard of (if you're a doctor, that's how to impress me!). I don't remember much of it (should have written stuff down, dementia leaves me unable to remember even the most interesting of things, such as the fact I should bring something to write on to important doc visits). All I know is that she handed an assistant a rather intimidatingly-sized stack of papers and that I have such large and specialized lab blood draw that it has to be done right at the downtown (main) clinic where she is. And this was all BEFORE she got my stack of infectious disease records! (The actual blood draw is soon to be scheduled... yes, it has to be scheduled!)

CharlieC - My Lyme/Borrelia as well as Brucella IgM and IgG (in addition to cultures) were both negative. My CMV and EBV were both positive for IgM (negative for IgG, shell culture, and full culture), indicating past infection, though, there is a very small chance that these figures indicate low-level chronic infection. Also, thank you for bringing up the idea of Babesia infection, I'll look into it. My neuro-ID doc may have mentioned it, I'll have to check out her final list of orders. As far as your suggestions of third-party labs, I'll look into them should my neuro-ID doc's orders fail to include something(s) important.

SarahO -- It is wonderful for me to hear another case similar to mine (even if it isn't part of a large controlled medical study!). In addition, I have read that infectious parkinsonism and dementia (especially symptoms from infection-induced hydrocephalus) are very much stoppable and in the case of dementia, generally reversible in a quick manner. Lastly, thanks for the Ehrlichosis info. It's good to see that the medical community is now paying more attention to this.

Ellie -- Interesting points you made there... For the past month or so, my daily fevers have decreased in frequency to a couple times a week. My mother (without knowing of my fevers decreasing) was commenting that my neuro symptoms (esp. dementia) were getting worse at a more rapid rate. During this period, I also took 3 free "trips" down the stairs (our house is 2 stories, make that 3 with our finished basement, and I have to take a lot of trips, traumatic and otherwise, to access many things in the house)... so maybe this indicates that the fever's an immune response that is actually helpful in warding off the bug...

Curiouser -- Thank you for your concern and point.. I was checked for heavy metal toxicity (via bloodwork) a while back, and the results came out negative. Unfortunately, heavy metal toxicity labs are notorious for producing false-negatives when the toxicity issue is nothing more significant than listening to too much heavy metal.


Again everybody, thank y'all. Having a community of patients who also know their science is an invaluable thing for me.

--MaracaSalesman

getting tested for Lyme's disease
 

Hi,
When you say there are three practitioners in WA; how do you find these names?

Thank you