I posted a while back that our son's blood sample was sent to the CDC for testing. It was sent via overnight on June 18 and the CDC did not do the test until July 12.
The CDC claims that his Babesia test was negative and have refused to run any more tests. I thought Babesia couldn't be out of the host for more than 48 hours. Anyone have any data on this?
They told Infectious Disease that they have issues with the way Quest does their testing and many times people are falsely positive for Babesia Ducani. Quest labs found the Babesia not once, but twice. The first titer was 1:4096 and after treatment with Lariam it was 1:256.
Would you agree that this titer would not have improved had the Babesia not been in his blood? And...he has made remarkable progress since treating Babs.
Don't worry...we are seeing a LLMD who is convinced the Babesia was keeping our son from improving. The story as to why we continue communicating with Infectious Disease is a very long story. We certainly are not in agreement with their guidelines and protocols.
Thoughts and perspectives are appreciated.
Posted by the3030club (Member # 21898) on :
I'm not really able to offer any insight on the babs testting. But what are your sons symptoms?
It seems like he's improved to a certain point and then hit a wall?
It certainly seems to be the case with a lot of people on here, i know it's mine.
Posted by Kerryblue (Member # 4077) on :
Hi, Fought the CDC for yrs. to even accept us or FM/or Cfids.+++ I still question whether they want to tell us real truth or they just do not have right tests for which we know. Hugggggssss, If you need,Kerry
Posted by seibertneurolyme (Member # 6416) on :
My suggestion would be to do a blood smear with either F lab or Clongen. Clongen Labs is the cheapest at only $100. You might get lucky and they would actually see the babs on his slide.
Hubby had what was thought to be the ring form of babesia on his bloodslides from the old Bowen lab back in 2001 when his ordeal began and then also on a blood smear from F lab in 2007. And now Clongen is seeing some other unknown blood borne parasite on his slides.
So I definitely do not believe that babs etc only show up on blood smears in recent infections.
If the lab froze your sons blood samples they may have been viable at the time of testing, but I am not exactly sure how long a frozen sample would remain viable.
Bea Seibert
Posted by Imhis4life (Member # 26581) on :
The3030club...just wanted to say that my son was being treated for Lyme but had persistent symptoms (fatigue, joint pain, glazed eyes, muscle weakness, etc.) and the LLMD suspected Babesia. When the test came back positive and very high, she started him on treatment. He's made incredible progress.
Onbam...tell us how you really feel...don't sugar coat things. ha. I'm just kidding:)
Bea..I know he has had Babs but I thank you for the recommendations. We are going to the LLMD tomorrow to see what might be next. The one thing that has really helped our son is physical therapy.
He was so weak from being sick for months. He lost so much muscle mass. Finally we are seeing the light at the end of the tunnel and it isn't an oncoming train.
The journey continues...
Posted by seekhelp (Member # 15067) on :
Ask the darn crooked CDC if your son is allowed to donate blood if not relevant.
![[Frown]](frown.gif)