Just got back from going over the blood work in my doctor's office.
Been spiking severe fevers in the middle of the night. Seeing this doctor. He did a blood smear to look for babesia, since I reported having it.
Today he told me there is no sign of babesia on the smear, and no sign of hemolysis; therefore, I do not have babesia.
Also, there is no such thing a chronic babesia.
Can you direct me to studies to the contrary.
I'm going completely insane.
Mary
Posted by seibertneurolyme (Member # 6416) on :
The problem is that all the studies are in animals. The IDSA does agree that if you are immunocompromised you can have chronic babesia -- but they specifically deny that lyme disease causes one to be immunocompromised. They only include things like cancer and aids in their definition.
If you have chronic longterm babesia it is most likely hiding out in the tissues and not frrely floating in the blood. Only very aggressive babesia treatment or lots and lots of bloodslides would find it in a blood smear. People can be very sick from babesia with less than 1 % of the bloodcells infected so that is another reason it is so hard to find on a blood smear.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Here is the article, but the problem is that they are using negative blood smears to determine if someone is "cured" of babesia. In chronic cases a negative smear doesn't mean much.
Persistent and relapsing babesiosis in immunocompromised patients.
Krause PJ, Gewurz BE, Hill D, Marty FM, Vannier E, Foppa IM, Furman RR, Neuhaus E, Skowron G, Gupta S, McCalla C, Pesanti EL, Young M, Heiman D, Hsue G, Gelfand JA, Wormser GP, Dickason J, Bia FJ, Hartman B, Telford SR 3rd, Christianson D, Dardick K, Coleman M, Girotto JE, Spielman A. SourceDivision of Infectious Diseases, Connecticut Children's Medical Center, and Department of Pediatrics, University of Connecticut School of Medicine, Farmington, Connecticut 06106, USA. [email protected]
Abstract
BACKGROUND: Human babesiosis is a tickborne malaria-like illness that generally resolves without complication after administration of atovaquone and azithromycin or clindamycin and quinine.
Although patients experiencing babesiosis that is unresponsive to standard antimicrobial therapy have been described, the pathogenesis, clinical course, and optimal treatment regimen of such cases remain uncertain.
METHODS: We compared the immunologic status, clinical course, and treatment of 14 case patients who experienced morbidity or death after persistence of Babesia microti infection, despite repeated courses of antibabesial treatment, with those of 46 control subjects whose infection resolved after a single course of standard therapy. This retrospective case-control study was performed in southern New England, New York, and Wisconsin.
RESULTS: All case patients were immunosuppressed at the time of acute babesiosis, compared with <10% of the control subjects. Most case patients experienced B cell lymphoma and were asplenic or had received rituximab before babesial illness.
The case patients were more likely than control subjects to experience complications, and 3 died. Resolution of persistent infection occurred in 11 patients after 2-10 courses of therapy, including administration of a final antimicrobial regimen for at least 2 weeks after babesia were no longer seen on blood smear.
CONCLUSIONS: Immunocompromised people who are infected by B. microti are at risk of persistent relapsing illness. Such patients generally require antibabesial treatment for >or=6 weeks to achieve cure, including 2 weeks after parasites are no longer detected on blood smear.
PMID: 18181735 [PubMed - indexed for MEDLINE] Free full text
Posted by lymewreck36 (Member # 4395) on :
Bea, I want to slit my writs. How do we all keep going in the face of this ignorance. I need to be put in a padded cell.
Funny thing is that this doctor I am seeing right now in Switzerland is honestly a good man, compassionate, trying to practice good medicine. But he only knows what the specialists tell him, what the "experts" say.
I feel that, maybe, somewhere inside this man, is someone who could look at studies on chronic babesia and have a dialogue with me, if I could find them.
I always feel that, even if the doctor drops me, if I plant the seed of doubt in the doctor's mind, I might have helped posterity to question the current hard line.
Can someone lead me to any research documenting chronicity?
Mary
Posted by seibertneurolyme (Member # 6416) on :
Mary,
Probably no one told you this but from what I have read the best chance of getting a positive blood smear is to do a fingerstick instead of a regular blood draw -- there is less oxygen in the extremities so the babesia like to hide out there.
Also, when you have the high fevers or sweats at night is also the best time for the fingerstick. The babesia is multiplying then but only remains outside of the cells for 45 seconds to a maximum of 10 minutes -- I posted a journal article on that recently.
Hubby did 6 rounds of standard IDSA quinine and clindamycin treatment recently but he also added in malarone and the herb cryptolepis.
We would have continued with more quinine but could not find a doc who would continue prescribing the IV clindamycin. So now hubby is on larium and bactrim. Had to add back malarone as it was obvious within a couple of days of stopping the quinine and clindamycin that the babesia was still there and that lariam was not going to be strong enough.
But as you said the problem is finding a doc who will treat until it is gone.
I would also do antibody testing. Hubby had never been tested for babesia duncani in the first 10 years he was sick. Last December he had an antibody titer of 1:2048 That came down to 1:512 after 2 or 3 rounds of quinine and clindamycin -- need to get the test repeated.
Hubby very rarely has antibodies to anyting so we were very surprised at the babesia duncani antibody. It would defintiely be worth doing that test in my opinion -- you might get lucky.
Bea Seibert
Posted by lymewreck36 (Member # 4395) on :
Hi Bea. My lyme doc in the U.S. will keep giving me meds. I just have become intolerant to medication.
In the meantime, while I'm having all these adverse reactions to necessary meds, doc here in Switzerland is trying to figure out why I'm hitting 103+ temps in the middle of the night, why I'm having blood in the urine and lack of urination...
All sounds like drug reactions to me, but bottom line is I have to keep taking my meds and my body won't cooperate.
Doc in Switzerland is not a llmd, so he just dismisses the lyme/babs stuff I'm saying and is trying to find out what is wrong with me.
So here is how it is....with meds.....blood in the urine, stop urinating, spiking high temps in the middle of the night....
stop meds....lyme/babs moving in full force,....spiked another fever in the middle of the night to confuse the situation, and Swiss doc here trying to figure out what is causing fevers.
He seems to have fixated on figuring out the fevers and dropped the issue of blood in the urine since kidney/liver enzymes were normal. Therefore, of course, there is not problem, regardless of kidney/liver pain. So he is now trying to figure out why I'm having fevers.
Took blood work to look for babesia since I reported having it, and the smear came up negative. Go figure! So he announces I don't have babesia.
White blood cell count was normal even though I had a fever of 103, so he cannot figure that out either.
So, here I am with this body that is refusing to receive medications for lyme/babs, and is getting run over with lyme/babs. Fevers of unknown cause hitting middle of the night, blood in the urnine if I take medication......
And I am so depressed........
It is a messy story that I'm sure I haven't even communicated well here in this post.
My babesia will probably be with me for my lifetime. I don't know what I'll do if I can't take meds anymore. Even herbs are kicking off this nasty adverse reaction stuff.
Mary
Posted by lymewreck36 (Member # 4395) on :
I would just like to put some studies in front of this doctor that discuss babesia despite treatment, and "seronegative" babesia.
Mary
Posted by sparkle7 (Member # 10397) on :
I don't know why they do this to people with a certain set of illnesses... Gulf War Syndrome, CFS, Fibromyalgia, Multiple Chemical Sensitivities, food allergies, environmental toxins, Lyme & co-infections...
I mean, can you imagine someone telling a diabetic, cancer or heart patient it's all in your head? How can these doctors think that they know all the illnesses that can effect humans & that there aren't any new ones that are just being discovered?
Especially, in light of nano engineering & genetic engineering... It's not as if there is no biochemical warfare going on. Who knows what might be in the environment? It's foolish to think these things that they are experimenting with can't escape into the environment.
These doctors are just guessing in alot of cases. I don't know why they expect to be paid so much for their lack of knowledge. Don't take it personally, lymewreck.
Posted by sparkle7 (Member # 10397) on :