Traveler -- Yes, I am well aware of the poor babesia testing. For 10 years no one thought to test my husband for babesia WA-1 (babesia duncani). His titer when he was finally tested was 1:2048. After not just one but six rounds of quinine and IV clindamycin hubby's titer finally went negative. But he still had positive blood smears from Clongen. And he tried pulsing his babs meds and herbs. He tried that 3 times and each time within 3 days he started having tremors and dry heaves and sweats etc etc.
Then he added ivermectin (the horsepaste from Tractor Supply) and flagyl to his malarone, Zithromax, lariam, doxycycline, artemesinin, and ECGC. He finally got a negative bloodslide and actually felt the best he had in over 10 years since he had gotten sick. He came off all meds and killing herbs for about 2 months for the first time in 3 years. His sweats and headaches and dizziness were starting to come back. Then he got 2 more tickbites and despite going back on lyme and babesia meds including IV rocephin and IV Zithromax and later IV clindamycin he just got sicker and sicker until on his 13 th ER visit in 3 months after just 3 days of shortness of breath he ended up with the lung failure.
I could not get the link to this video on babesia by Dr H in New York to post for some reason so am providing a link to a LymeNet thread. Everyone who has babesia needs to watch this video in my opinion. I explained on that thread more about the hospital's lack of knowledge about how to test for babesia.
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125131
And here is another thread to a link I just posted last night on LymeNet. I finally found a medical journal article that says babesia can cause seizures -- it is in dogs though, but I think it is very relevant.
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125126
I want to thank everyone who expressed condolences.
It was very hard to watch the video and hear the doc say that ARDS from babesia can be fatal when I am 100 percent convinced that that is what happened to my husband. He was off of babesia meds for 3 weeks until the hospital finally gave him 7 days of mepron and Zithromax after I went to the medical ethics board of the hospital. After that 7 days of treatment I had blood drawn post mortem and that is the blood Fry lab used in which they found not just 1 but 3 different unnamed uncategorized babesia like blood borne parasites. These are not the common strains of babesia microti or even babesia WA-1 but are listed in the GenBank. Don't know at this point if these strains have ever been found in humans before or if they have only been found in animals.
If you have anemia or hemolysis from babesia or it is causing seizures or your spleen is enlarged then please take this infection very seriously. I don't know if a 12 year old babesia infection killed my husband or if it just took the 3 1/2 months since the last tick bite.
I am copying hundreds of pages of my husband's medical records to send to Columbia University in New York for research purposes. Hopefully something will be learned from Steve's case that can benefit others.
Bea Seibert