Bartonella, Lyme, Galaxy Lab, Igenex. Dr. De Meirleir, Dr. Kaufman etc... Where are we heading?

[Folk]

So. Things are getting strange, confusing. Where are we heading?

When I got near to the extreme side of this disease I went to belgium to se De Meirleir. I already knew my dgx would be Lyme. He tested me for lyme and a lot of other things. It was done in 3 labs, came back kind of positive, borderline, and negative. That meant I had lyme for him. If it came back all negative but one borderline he would consider it positive.

I refused to take the abx, so I went to Dr. Kaufman. I asked him about those test and lyme and he didn't seem to trust that so much, specially since I've never lived near a risk zone. Ok, 2 years went by, I got a lot better with lots of medications and experiments, clean eating, no alcohool etc.
Then Dr. Kaufman said I should get tested for Bartonella on Galaxy labs. He said they were 100% accurate.. I love Dr. Kaufman, he is the most empathetic Dr. I've ever met. But I post ponded the test as much as I could till I finally did (was a pain in the ass to send blood overseas and REALLY expensive). I already knew the result would be positive, and it was:
B. henselae GH17-2529-1-S 8/16/2017 Serum Reactive 1:64
B. quintana GH17-2529-1-S 8/16/2017 Serum Reactive 1:128

(over 1:64 is reactive so it's kind of borderline too, that's more than enough for them.)

I'll have another appt with Dr Kaufman now, but I still don't trust this tests. I know he'll went for long course abx and I've seen lots of patients going that route just to get sicker and sicker, 3 years of abx for no results, or even developing others diseases such as C difficile.

At fisrt I really trusted Dr. Kaufman specially cause he didn't trust the "everyone has lyme" story but now I'm confused... Where are we heading? The only clinic that started doing out of study Rituximab is now going the lyme route just using another tick-bourne bacteria....

Kind of ranting here but... Any thoughts, personal experiences?

 

[Issie]

I've done antibiotics and come to find out - I'm resistant to the one they had me using. In 3 years, I still have issues. We are using herbals now and I'm herxing much worse than I ever did with with the antibiotic. I think more people have some form of borrelia and it isn't detected. Partially because they don't show antibodies because of faulty autoimmune systems. So it can run rampant and never be "picked up". Then if the immune system starts detecting things better - it then shows up. At least that's how I've had several docs explain it to me. I'm also being treated for babesia because of all the neurological issues I have. The there is the positive CIRS and MARCONS. These are my focus right now. I'm certain the bottom line is the immune system being faulty. And then inflammation is a huge issue too. It's all connected.

Issie