Awesome Abxnomore! Thank you for posting this!
Posted by seibertneurolyme (Member # 6416) on :
Thanks so much for posting.
And yes the doc is absolutely right -- non LLMD's do NOT know how to test for babesia. The hospital docs tried to convince me that Steve did not have babesia based on just one negative malaria blood smear done in the hospital lab. Then when I requested antibody testing for babesia WA-1 they messed up the first time and ordered tests for babesia microti. Steve had had positive antibody tests for babesia WA-1 in the past but never for babesia microti.
Then the 2nd time when I requested PCR testing the hospital lab could not find a lab in their network that offered a PCR test for babesia WA-1 so the lab changed the orders and did antibody tests instead. They had been specifically instructed to send the test to Clongen but did not follow the hospital doctors orders.
So the tests were delayed multiple times. Eventually on the day Steve died from ARDS the Clongen report came back positive for babesia on a giemsa blood smear.
It was several months before all the paperwork got finalized and Fry Lab confirmed that Steve had not 1 but 3 different babesia like blood borne parasites based on PCR tests. These were all uncategorized unnamed babesia species listed in the GenBank.
But since the doc is in New York I do not think he can order tests from either Clongen or Fry.
Anyone who has persistent or relapsing babesia really needs to be aware of the medical literature because if you end up in the ER or hospital the docs know even less about babesia than they know about lyme. And if you have had 10 days of mepron and Zithromax they think you are cured if you ever even had babesia to begin with.
As I have mentioned before I think it is to everyone's advantage if you are one of the lucky ones who has positive tests to take the steps to get your case reported to the CDC. Steve's hospital docs still have not done that as far as I know and that is one of the things that will be part of my malpractice lawsuit.
Bea Seibert
Posted by Catgirl (Member # 31149) on :
I had a feeling Steve had more than one strain. I'm pretty sure I have at least two.
Bea, thank you for posting this. I see the value of testing. Although the idiots can still say they are following current guidelines (days of meds?). But positive tests with persistent clinical symptoms should carry more weight to convince these antiquated institutions to treat.
I am so sorry you and Steve went through this. I hope you win big.
Posted by Catgirl (Member # 31149) on :
I forgot to mention--I am surprised that babs makes lyme 3x worse (doc's video)! Explains a lot.
Posted by seibertneurolyme (Member # 6416) on :
Catgirl,
I think just about every LLMD would agree that babesia makes a lyme infection worse. But in the medical literature I think there are maybe just 2 or 3 articles that even mention patients that have both infections -- and I think some of the articles say having both infections makes symptoms worse and other articles disagree.
I am pretty sure I have checked before and there are not any journal articles at all that talk about patients having more than 2 tickborne infections at the same time. This is just another example of how mainstream docs do not have all the facts and info they need to diagnose and treat patients.
Bea Seibert
Posted by lax mom (Member # 38743) on :
Thanks for posting!
I think it's pathetic that the Chinese government is eager to meet with a US LLMD to help figure out how to treat Babesia, yet our own government villianizes these same Drs.
My husband had very high Babesia duncani (WA-1) titers, yet was negative for microti.
Bea: I'm so glad you have stuck around Lymenet to help all of us. Thank you Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Catgirl: I forgot to mention--I am surprised that babs makes lyme 3x worse (doc's video)! Explains a lot.
- Many LLMDs have known this for a long time. At least the smart ones know.
Posted by C.P. (Member # 38378) on :
Thank you so much for sharing Dr. H' video. All doctors and medical students should be required to watch it. C.P.
** edited to remove LLMD's name **
[ 07-14-2013, 09:03 AM: Message edited by: sixgoofykids ]
Posted by Pinelady (Member # 18524) on :
Oh China knows what's what...LOL
Posted by seibertneurolyme (Member # 6416) on :
lax mom -- I think it is very sad that the Chinese docs are more interested in learning about babesia than U.S. docs.
Another interesting thing I noticed several years ago -- almost every single published study regarding treating babesia with herbs was written by the Japanese and they were trying to find effective treatments for babesia in dogs.
Bea Seibert
Posted by Hoops123 (Member # 18333) on :
He found babesia in my son after others could not.
Posted by Hoops123 (Member # 18333) on :
He found babesia in my son after others could not.
Posted by Catgirl (Member # 31149) on :
The man is brilliant. I have to give him kudos-- He hasn't stepped out of the spotlight even though the climate is hot.
Bea, that is interesting about the Japanese. That is one country whose people have not gone to see him for treatment. Uh, if it's in their dogs, it's probably in them too (egos?).
Posted by Abxnomore (Member # 18936) on :
He had his grief early on, may be in 2000 or so. I remember when he was the new kid on the block. He's really become one of the leading experts, if not the one.
![[Smile]](smile.gif)