posted
I know I have read this on some website. But I am confused -- per discussion with Dr K at Clongen lab, babesia (especially if chronic) likes to hide in the tissues. I do believe that it probably is not floating around in the bloodstream -- and might not be found when doing normal blood draws from a vein.
But what really confuses me is hubby's most recent blood slide. We supplied Clongen with 2 tubes of blood on April 7, 2011.
One tube was from a fingerstick and was used for a blood smear. Dr K found some sort of extracellular blood borne protozoa -- a new one that he doesn't think he has ever seen before in anyone. Visually it did not have any distinctive characteristics of babesia. So once again hubby is a medical mystery.
The 2nd tube came from Clongen lab and already had a pre-enrichment culture medium specific for babesia in the test tube -- the blood added to this tube was from a normal blood draw. After 10 days of growth this culture medium was tested for babesia species PCR and also specifically for babesia duncani (WA1) by PCR. Both tests were negative.
Hubby did repeat his babesia duncani titer around the same time -- it has decreased from 1:2048 in December to 1:512 currently. His ECP (eosinophil cationic protein) test decreased from 69.4 down to 14. So it does seem like the aggressive babesia treatment is trying to work.
So of course the question becomes -- does hubby really have both babesia duncani plus some other blood borne protozoa (2 - 3 microns in size)? And then there is the question of the dumb bell shaped protozoan (4 - 6 microns in size) seen on a previous blood smear from Clongen in June, 2010.
Hubby really did think the IV flagyl was helping with headaches but we stopped that after 2 weeks due to the first high fever.
Have an appointment with a new LLMD in North Carolina next Wednesday. Hoping she can shed some light on what to do next.
If anyone has had a positive babesia test from a fingerstick I would be curious as to what lab you used and which test was done -- PCR or blood smear of titer or what.
We do have one additional babesia test we are waiting on. Hubby should get the results sometime next week from his IGeneX FISH test.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
How did you get a tube of blood from a fingerstick?
I believe that a fingerstick is generally the best method for detecting Babs or Malaria. This is the method that they use in the field, so there must be a reason why.
Someone that has been on IV recently may not show anything from venus blood.
Of course the ideal method is to do it right on the spot. That way everything is fresh, and the thin smear can be fixed with methyl alcohol after 10 minutes of drying. This keeps the parasites intact.
I've always wondered whether or not the chemicals in the tubes might skew the results in some way?
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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Dawn in VA
Frequent Contributor (1K+ posts)
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posted
Hey Bea, tried to PM you but your box is full.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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As to the fingerstick -- the lab technician had gloves on and she just kept squeezing hubby's finger until she got enough blood. This lady has been drawing hubby's routine bloodwork every 2 or 3 weeks for several years now so she is very helpful with any special send out bloodwork since she knows him so well.
Dawn,
Please send an email to me at the address below -- just don't have time to clean up my mailbox right now.
Seibertneurolyme (at) yahoo.com
Thanks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Bea, in my opinion, this is the problem with Clongen. He's unable to identify anything with certainty so it's like throwing money down a drainpipe. I wonder how many hear the same story when they have a blood smear done. I got it. Your husband got it. How many others?
Did he say if there is anyway to PCR it?
This WA-1 test seems really suspect for Babesia at least. I mean how many negative blood smears can one have when titer levels were so high? It seems improbable. I never had anything show up from local labs, but had an elevated titer for 2+ YEARS.
i think these specialty labs need to start digging in more with these abnormal results to retain credibility.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I guess I look at it differently than you do. While it would be nice to know exactly what hubby has it is at least reassuring for him to have bloodborne parasites show up on his bloodslides. One of the reasons is because despite all the unforseen obstacles he actually feels like he is on the right track.
Hubby says that the IV flagyl gets into the right part of his brain that nothing much else has touched recently. We do have 14 days left and at some point we will use it whether or not we can find anyone else to prescribe the additional 2 months suggested by the original LLMD consultant. But next time we would probably try it on some sort of pulsing schedule rather than every day.
Dr K said there was one more test he could do to try to identify the unknown protozoa but he wasn't sure if he had the time to do it -- he did not say what the test was.
Dr K at Clongen also said he was thinking of doing some sort of research study with hubby and several other patients like him who just can't seem to get well and they also have different pathogens show up just about every time they have a repeat blood slide. Hubby is more than ready to volunteer any blood or info the doc wants.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Bea, I guess you have a good point. I do understand science isn't perfect and there are many, many unknowns still. I just get perplexed why Clongen can find so much, but other labs can't. I would presume other lab technicians are qualified to do blood analysis and could see all this if it were there.
In your husband's case, there is little to no doubt he has major issues. It seems like the bacteria testing to see which Abx can hurt them makes all the sense in the world. If it is WA-1, OMG is this a powerful organism.
I'd sure love to be part of his research study.
I wonder how much money does it take to capture this man's time? Thousands? Tens of thousands? Just how much is it to have a highly qualified individual focus on a complex case?
I will admit I am very tempted to have one more blood smear done there to see if my same stuff shows up. My LLMD is open to it. I would need more assurance from Clongen they'd take it further than last time to whip out more cash.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I was told by The Lab director at Spirostat that they now have a finger prick test for babs and other pathogens because it likes to hide in the extremities where there is very little oxygen...
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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