posted
As I posted elsewhere hubby is currently in the hospital.
To pass the time we have been making followup phone calls to insurance etc. Since hubby is such a frequent customer the blood lab where he has his routine bloodwork done agreed to fax one missing test result from a week ago to him in the hospital.
Imagine his surprise when his Babesia WA1 titer was psoitive. This was the first time he had ever been tested for WA1 -- we asked the neuro back in August to repeat tests for babesia and bartonella and lyme since they had not been done in a couple of years. Unfortunately he ordered a babesia test but not the WA1 test. In early December his regular LLMD agreed to order the WA1 test along with some routine annual bloodwork. ----------------------------------------------- LabCorp test (send out to Focus Diagnostics)
Results WA1 IgG Antibody, IFA 1:2048
Reference range = less than 1:256 ---------------------------------------------
So now maybe we can get the docs to try another malaria med -- such as larium or malarone.
Hubby has never had shortness of breath, does not currently have sweats (sweats over the years have been fairly mild and they seem to come and go). But lately hubby has been having head pressure headaches, dizziness, worse nausea, elevated bilirubin and seizure-like epsidoes have returned. His cough is not currently active but has been a symptom in the past.
Hubby did have what was labeled as ring form of babesia seen 2 times by the old Bowen lab back in 2002 and also seen by the F lab in 2007.
He has treated for suspected babesia but had what we thought was an allergic reaction to Mepron -- so has done many many other things instead.
It is a relief to actually have a test result even at this late date.
Even if you live on the East coast please get tested for the WA1 (Washington state) strain of babesia before ruling out babs.
Bea Seibert
Hubby does have a call in to Dr K at Clongen lab regarding the test results since his bloodslide from 12/6 was clear. Will post his comments later.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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posted
Welcome to my world Bea. I have the same titer level. All I know is this strain of Babesia is worse than hell. It's not so coincidental now your hubby and I dry heave, head pressure, dizziness, elevated bilirubin, sporadic cough, etc.
I pushed all my docs HARD to get this WA-1 lab done. Self-education was the only hope. The issue is NO DOCTOR KNOWS HOW TO TREAT IT. I saw Dr. C in MO, but he didn't test for it. Had to push my PCP at home.
I feel it's close to unbeatable based on most accounts. There has to be some magic treatment, but what?
It'll be very interesting to see how my blood smear comes back from Clongen. It was completed yesterday. I won't know results for a while.
I'm glad you got some answer. A tiny part of me wonders if the WA-1 test is 100% accurate, but I have heard some here getting negatives. Furthermore, those with positives have a very similar symptom profile. I think WA-1 causes less sweats than Microti, but it's a guess.
I'm praying A-Babs may be a fix. It's one of the last hopes.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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"I think WA-1 causes less sweats than Microti, but it's a guess."
I'm positive for Babesia WA-1 through LabCorp, and your statement is true in my experience. I have never had the drenching night-sweats people speak of, but I do get occasional light sweats in the night. I've had only a few episodes were I felt covered in sweat.
I have more problems with balance and vertigo, as well as air hunger and/or chest-wall inflammation. I cannot differentiate between what is causing the latter symptoms -- Babesia or Bartonella.
As far as treatment, I haven't done enough to really judge my account. But, I've been taking Artemisinin with my antibiotics since the beginning, and many of my Babesia symptoms are reduced to manageable level.
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jackie51
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I'm east coast and my symptoms are similar to wolfed out. I would wake up with sweats in the middle of the night. At the time, I felt it could be attributed to just about anything, but I tested positive on the babs test, am being treated, and it's gone away. I also had the vertigo, car sickness, air hunger, legs sore after walking up a flight of steps, blah, blah.
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seekhelp
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We all have the same issues. Too unlikely to be a coincidence.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hubby did speak to Dr K at Clongen and learned a few things. For those who do not know, Dr K is a PhD microbiologist and not a medical doctor.
Per Dr K -- he believes that hubby's titer indicates a current long term infection since the titer is so high. Especially in combo with symptomology.
As to hubby's clean blood smear -- according to Dr K a bloodslide uses something like .5 ml of blood. The average adult male has 7 or 8 liters of blood -- so it is like fishing in a lake as others have said in the past.
Also according to Dr K -- babesia and especially WA1 likes to hide out in the tissues and not in the blood. He has found it in both lung tissue and muscle tissue before.
His lab does offer a PCR test for this species -- but he was honest enough to admit that the odds of getting a positive PCR test are only around 6%. So statistically speaking -- you would need to do around 20 PCR tests to rule out WA1 babesia based on PCR testing.
As to treatment -- from discussions with docs and based on his knowledge of microbiology -- he thinks a minimum of one year on babesia meds. But thinks that herbs may be a better option. Dr K suggests follow-up titers and life-long monitoring for this babs species. In his opinion some patients may even need to do maintenance meds monthly or maybe quarterly for the rest of their life.
Will find out tomorrow what meds hubby will start on. Plan to push really hard to start something while he is in the hospital where he can be monitored.
Hubby was doing better this afternoon. Maybe he will get really lucky and be released before Christmas.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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I may be grasping at straws, but I wonder if this is the organism that destroyed my life 12 years ago? I took many trips to Las Vegas and the West Coast. I think my body was 10x stronger before and I held it in check. Over the years, it collapsed and I hit a brick wall.
I wouldn't be surprised if parasites/worms are another problem. Thanks for the feedback from Dr. K. While not a doctor, I bet he has access to some high-profile ones so he's speaking with knowledge most likely. Very interesting.
Did Dr. K say what herbs he recommends?
Not a day goes by I didn't wish I paid Clongen to do a Babesia PCR on my quadricep muscle as opposed to a Lyme PCR in late 2009. Bad move on my part. yeah, the odds are low, but I think I had a chance of it showing. My legs were impacted greatly. I've also had a bone marrow biopsy. Another good opportunity to catch it that never was utilized.
Good luck!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Hubby is home from the hospital. Since his altered mental status is improved they released him. His PCP agrees that the WA1 titer indicates chronic long-term babesia -- said he would write scrips for whatever meds the LLMD suggested. But the LLMD has apparently started Christmas vacation early and is unreachable.
Hubby had one more refill of Coartem. Picked that up at the pharmacy. Not sure yet when he will use this. The PCP thought that the IV zithromax hubby is already on would cover him for babs, but obviously that is not enough by itself. The zith did stop his cough, but then again he had a really bad dizzy spell just after his daily zithromax IV one day in late November and has been becoming more symptomatic since.
Anyway, stopped the LDN in the hospital and going to wait at least a day or two to make any other changes unless something else changes.
Seek -- Dr K did not mention specific herbs -- don't think he knows any specifically.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
FYI: I believe you said your husband had trouble on Rifampin before ending up in the hospital. Is this correct?
Well, Rifampin kills certain strains of Babesiosis, and perhaps it does well with WA1. I don't think there is any research though for WA1.
Note: I am not implying it would be a good idea to continue Rifampin.
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posted
Also, has anyone had a negative B. WA1 test through Igenex and positive through Focus?
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seekhelp
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I'd try Byron White herbals (A-Babs) Bea.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Interesting. Yes, I did find one journal article that says rifampin can kill babesia felis (in cats). Hubby's LLMD is fond of saying that we don't really know exactly which infections we are treating with which meds.
Seek,
Have not tried any of the Byron White Herbals -- when I read about them previously I was doubtful that the suggested doses were high enough to be therapeutic. That is only my own personal opinion from research I have done on herbs.
Hubby does have an 8 ounce bottle of cryptolepis left over that I may need to resort to between now and his next LLMD appointment.
For now, just taking it one day at a time, until we can come up with a long term plan.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
If Rifampin kills Babesia and maybee other protozoaI am not wondering why I feelt so awfull with Rifampin
Posts: 188 | From Germany | Registered: Feb 2009
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posted
For those on the east coast, Bea is right... consider testing for B. Duncani (WA-1).
This very recent abstract is from Focus Diagnostics staff. They were seeing a lot of B. Duncani in samples from patients in non West Coast states, so they investigated possible EBV cross-reactivity. Didn't find much, so they conclude that B. Duncani is more widespread than previously thought.
Dr. J in MD and Dr. S in VA have both written that we have B. Duncani (WA-1) on the east coast and my son's former LLMD told us this personally.
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I have the same titer level. All I know is this strain of Babesia is worse than hell. It's not so coincidental now your hubby and I dry heave, head pressure, dizziness, elevated bilirubin, sporadic cough, etc. ![[Smile]](smile.gif)
I won't know results for a while. 
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