posted
I will start by saying that I have no doubts that hubby does have some species of babesia or some other similar blood-borne parasite. My primary reason for being so certain of this is that at least 2 times in the past 7 years while under treatment for various tickborne infections hubby has had dramatic improvements in symptoms with meds specific for babesia (low dose oral quinine and clindamycin both times).
His treatment for babs has been long and varied � tried many different meds and several herbs.
Briefly � hubby crashed and was hospitalized right before Christmas. Crash was most likely due to one of 2 reasons � added back high dose rifampin to meds for a couple of days or doubling dose of low dose naltrexone to the full dose of 4.5 mg � discontinued both meds at that time. While in the hospital he got back his test result for WA1 from LabCorp � result was an IgG titer of 2048. LLMD and PCP both feel that indicates a long term chronic babs infection. This test was dated 12/15 and was while on low dose naltrexone.
It took a while to get docs on board with trying a new babs treatment. Hubby had not had any babs meds since July 2009. Took a gamble and started with malarone � had not taken this med in the past but did have what was thought to be a severe allergic reaction to mepron back in 2004.
After taking 12 malarone pills over a couple of weeks � titrated med very slowly � finally got the blood drawn for the ECP (eosinophil cationic protein) test on 1/14 � result was 69.4 (normal range is 0 - 10 ) Further discussion in this thread.
So either the malarone was really going after a babesia like parasite � herx symptoms would seem to indicate this � or hubby was already showing an undetected allergic response � hives started after he had taken a total of 80 malarone pills. We stopped the med at that point.
Now for the confusing and frustrating new test result. On 1/31 after hubby had taken 52 malarone pills � but before starting the IV clindamycin and quinine which were to be the 2nd phase of babs treatment � he had blood drawn for the IGeneX babesia duncani test. This lab tests both IgG and IgM. Unlike the LabCorp test the IGeneX test states � antibodies to other babesia species can cross-react and produce a positive result to B. duncani IFA test.
Results � B duncani IgM -- less than 20 Interpretation = Negative B duncani IgG � 80 Interpretation = May or may not indicate active infection. In patients with previously high titers, such titers indicate resolving infection.
So that is why I hate babesia tests � if it shows on a bloodslide (2 times with the old Bowen lab in 2001 and once with F lab in 2007) everyone wants to know what strain you have. But according to the IDSA you are cured as soon as your bloodslide is clear. And every lab has their own testing method and cross reactivity explanations.
Does anyone know how quickly babs titers normally decrease? I thought it took weeks or months? � between 12/15 and 1/31 hubby�s titers came down from 2048 to 80 � that is of course assuming that the 2 different tests from 2 different labs are comparable.
Normally hubby never has much of an antibody response to anything � and his circulating immune complex test was normal back in August so it is not a question of the antibodies being bound up and not showing on a test. Hubby says he believes all the tests are accurate. I guess he thinks like I do and that the naltrexone boosted his immune system (his WBC did go from a normal of less than 5.0 to 6.9 when he was in the hospital) and he was producing more antibodies to babs when the test was done back in December and again when first starting the malarone.
For now I guess the plan is to continue on the heavy duty babs treatment as long as hubby can tolerate it. We are taking one day at a time. He has one more day to go in the first 10 day cycle of IV clindamycin and oral quinine (IDSA doses). Then for the next 10 or 15 days depending on how he does I will switch him to some herbs and maybe switch up the Clindamycin for IV Rocephin or oral minocycline.
I would be very surprised if he can tolerate the 4 courses of IV clindamycin and quinine that have been prescribed but hopefully we can get thru at least a 2nd round. Will probably add back naltrexone at lower dose and may even try malarone again before we are thru. This next 6 months or a year will be challenging to say the least.
Original plan was to retest the original Labcorp WA1 titer in 3 months. Will do that at some point probably after stopping the quinine and clindamycin.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, sadly I anticipated this result would come back from Igenex Bea. I don't trust Focus Labs at all on this test. I have just seen too many positives.
I agree 100% with you about hating Babesia tests. It's all a useless exercise in futility.
Seeing a clear blood smear from most labs is the dumbest damn thing ever to confirm the illness is gone. For goodness sake, the Monsters Inside Me Special on Discovery Health said there's a 1 in 200 chance of finding an active infection on a blood smear.
The fact he saw remarkable improvement has to mean something as these malaria meds just don't have any anti-inflammatory or other positive effects I believe.
I think these docs/labs are so lost. They can't look for the uknown..just what they are paid to focus on.
I have had this WA-1 test from Focus done 5+ times...it was originally 1:256, then 1:2,048, then two times 1:1,024, then 1:512. All over the board.
Many say Igenex's test are not good for coinfections though. They're praised endlessly for their Western Blot, but maybe it doesn't carry over the Babesia/Bartonella?
Good luck.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Just FYI- Several years ago, I know that IgeneX sent their WA-1 test to the health department lab in a nearby county. I don't know if they do that still or not.
You gotta think, that blood smear is less than an oz of blood, and a body has what, about 4 liters of blood?
I think basically no one knows about this bug, and now LLMDs are finding that Mepron isn't working, or people are building resistance to it because they did not presribe high enough doses. Also, despite what they say, you CAN develop resistance to Artemesea.
Now, apparently the "in" thing to do is a super low fat diet. Well, that's just great, isn't it? After having people take 24 g of fat 2 x a day for one or even two years for MEpron, now they say a low fat diet helps.
If anyone thinks they were helped by a low fat diet, please post here, cuz I don't think its good for you myself. But it helped someone, I'll try it
I really don't know what to think anymore..
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Both my children have babesia but never showed positive for it ever. We treated with Mepron and zith combo and it worked for my son but we are still treating my daughter. May I ask what the high fat diet with Mepron is? I have never heard of that.
Thank you,
Pattiecake
Posts: 687 | From PA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
pattiecake,
mepron is best absorbed with fat....a fatty meal... i used peanut butter, coconut oil, avocados, etc....i think it is about 24 grams of fat per dose...(don't quote me there).
the insert that comes with mepron should state this...that it is best taken with fat.
good luck to your daughter.
Posts: 3975 | From usa | Registered: Aug 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Babesia Duncani is known to be quite difficult to eradicate. I was treated for it for a year and had improved a lot, but not completely when my doc took me off the meds. I relapsed.
Next try I was on Mepron, zith, artemisnin, and Lariam, for a year when insurance said enough of the zith. So he switched it to Biaxin, and my next relapse began.
I've been all over the place since then, and was feeling a bit better at the end of the year. However for the past few weeks I'm not sure what exactly is going on.
I am now keeping a daily symptoms log to show my LLMD at my next visit to try and figure out what is going on.
I know the Babs is still with me, unfortunately, but some of my other symptoms could be due to hormone deficiencies, and other problems we are addressing.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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