I just realized that my husband's babesia infection is a CDC reportable case. Based on the Clongen bloodslide and his symptoms -- both objective and subjective -- his case was reportable.
The fact that Fry Lab later found that it was not the common strains of babesia microti or babesia duncani (WA-1) does not negate the fact that babesia like blood borne parasites were seen in a Geimsa stained blood smear by Clongen Lab.
Please go to the link below and review the Babesiosis Case Report Form. If you feel your case should be reported to the CDC print out the form and take it to your LLMD and request that they file the form.
Babesiosis is notifiable in all 50 states but technically the surveillance is ongoing in only 18 states I think.
Click on the Babesiosis Case report Form on the left
Also click on the article on the right -- MMWR(7/13/12) -- Babesiosis Surveillance - 18 states, 2011
Please stand up and be counted if your case meets the reporting criteria
Bea Seibert
Posted by poppy (Member # 5355) on :
I always wonder about insisting on reporting. On the one hand, it makes their numbers more accurate. But we know they don't want accurate numbers.
And in the past doctors who reported a lot of tickborne disease cases found themselves investigated. Just another way to keep the numbers down.
They will also go after labs that are good at detecting tickborne diseases. One FL lab was shut down and they came close to closing IGeneX. So be careful what you wish for. They have us coming and going.
Posted by seibertneurolyme (Member # 6416) on :
Poppy,
I think the majority of people who have positive babesia tests probably have antibody test results from Quest or LabCorp. And I certainly don't think those labs are going to be shut down.
Very few people actually have positive blood smears as Steve did -- because really the only labs that take the time to do that test correctly are Clongen and Fry Labs as far as I know.
As for Babesia duncani (WA-1) in the past at least that antibody test was only available from LabCorp -- but they actually had the test performed by Focus Lab. Thru the grapevine I had heard that that lab was investigated a year or so ago because they were getting so many positive test results. They did change the cutoff on what they considered to be a positive test -- don't have Steve's tests in front of me right now to check the actual numbers.
I personally think the only way to get the attention of the CDC is to get the reported numbers of cases higher.
And the other side already knows who the lyme doctors are. The government has a database where they can check at any point in time and see what docs have written what prescriptions.
Yes, lyme physicians are harassed by medical boards. It is a complicated issue as we all know.
The numbers of babesia cases currently being reported is only about 1 for every 20 or even 30 lyme cases and we all know that the infection is much more common than that.
I think getting the number of all of the coinfection cases reported higher is important. I think there are only a couple of actual case studies in the medical literature that list patients with more than one tickborne infection. Pretty sure there are none that list patients with 3 or more infections. The real world is not being reflected in the medical literature and that is hurting both patients and treating physicians in my opinion.
I am pretty sure that with the coinfections there are no clinical diagnoses recognized by the CDC. So if a case is reportable then there is laboratory evidence to back it up. Which of course does mean that the lab is the one on the line and not the doctor.
Bea Seibert
Posted by Hoops123 (Member # 18333) on :
To the best of my knowledge, my one son's babesia positive was never reported and the other son's west nile virus was never reported. Neither the lab or the providing doctor reported same.
Posted by nefferdun (Member # 20157) on :
I emailed the CDC before informing them I acquired borellia, babesia duncani and ehrlichia in Montana. They wrote back telling me I was mistaken because borellia does not exist here. I told them I never left the state, was infected by a wood tick, had the rash and was positive according to their standards. They did not respond.
So it is a waste of time. They don't want to hear what they don't want to know.
Posted by faithful777 (Member # 22872) on :
Unfortunately, not everyone with Babesia tests positive. I wish I had proof to send to the CDC.
I was positive for Ehrlicia and I don't know if the LLMD I was seeing then reported it or not.
Posted by lymednva (Member # 9098) on :
Love how they say treatment is usually for 7-10 days! I've been treating Babesia Duncani for over six YEARS and it's still not completely gone, but getting closer and closer!
Posted by oxygenbabe (Member # 5831) on :
We need good babesia treatment. It's not that babesia is so hard to kill, its that no effective treatment exists and nobody is examining WHERE it sequesters. Bea, did you read the article in the Atlamtic about the woman with that rare disease where you grow excess bone? She started a foundation and they've discovered the gene that causes it.
To me, babesia and sometimes bartonella, are the tbd that make chronic "lyme" SO BAD. If we could treat babesia effectively!
I'd love to see Bea take her passion and try to get a foundaiton started. Maybe I"m pie in the sky because I can't begin to do it myself.