For added confirmation that the malarone hubby is taking is really trying to treat babesia or a similar blood-borne parasite we did one additional test.
This test has been proposed as a challenge test by the �no name LLMD� who has written several books on tick-borne diseases. The info on the test follows.
Eosinophil Cationic Protein � ordered from Lab Corp (they send out the test to National Jewish Health). Surprisingly it is a cheap test � Lab Corp only billed insurance $28. Takes about a week for test results.
Hubby did not have a baseline test. Took 1 Malrone pill for 3 days the first week and then 2 pills daily for 4 more days before doing the test � total of only 12 malarone pills in 10 days.
Many on LymeNet may know that hubby has been sick for 10 years � has taken many meds for suspected babesia over the years � but not mepron (presumed allergic reaction 7 years ago) and never malarone. In December, 2010 had a positive test for babesia duncani (WA-1) at 1:2048. That was the first time he had been tested for this strain of babesia.
He started having some herxing symptoms with the 1st or 2nd malarone pill
Test results � White blood count =5.1 (Range 4.5-11.0), Eosinophils absolute count =.2 (Range 0-.5), Eosinophil %=3 (Range 0-7%), Eosinophil Cationic Protein 69.4 High (Range 0-10)
Hubby asked me how this test could be high if his total eosinophils were normal. I told him that I guessed it meant that the eosinophils he does have were overactive. Obviously based on this test result his immune system is working overtime. That is the best I can do as an explanation.
14. If your lab does not test for new species such as Babesia duncani or the many other documented species of Babesia or Bartonella that infect humans, you cannot rule out these infections with a �negative result.�
One way to decrease treatment failures is to use a new medical trick to detect stealth Babesia, whose presence can cause ongoing fatigue, headaches, weight gain, and Lyme treatment failure.
The �trick� is simple. A patient is given at least two Babesia-killing medications such as Mepron, artesunate at a high useful dose, or Malarone (for the proguanil). These medications are used for ten days at a dose you and your physician think is worth the risk, and usually at least one will kill a few Babesia parasites.
Approximately 10 to 14 days later, a second ECP (eosinophil cationic protein) level is taken to compare with baseline. If the ECP pops up significantly, it is usually a sign of Babesia die-off. Eosinophils are releasing ECP, possibly injecting Babesia debris. ECP is meant to kill parasites.
An alternative or added option is to wait five weeks and have the patient tested for antibodies to B. microti or duncani.
One young patient with profound illness was finally diagnosed in this manner, and after three weeks of triple Babesia treatment, had significant clinical improvement for the first time in six years.
Stealthy low-volume Babesia is a common problem in tick and flea infection treatment. Talented health-care workers commonly miss these red blood cell parasites, but this trick usually causes them to show up and can save someone from years of failed treatment. -------------------------------------------------
I hope your husband finds improvement with Babesia treatment. All the sickest patients I know have B.duncani.
I treated for B.microti for a year with various Mepron combos. I thought I had alleviated all of my symptoms. In hindsight, I still suffered from sleep apnea, a condition which varies in severity in direct relation to my Babesia load.
After 18 months off of Babesia meds, it is back in full force. This time, I plan to treat beyond resolution of ALL symptoms, and to finish with Primiquine/Chloroquinine. This combo is used to treat the immature, hypnozoite form of Malaria falciparum. It resides in the liver cells and causes relapsing Malaria symptoms.
I've heard two people talk about the hypnozoite form of Babesia recently, but it is not something that is discussed here. There is still so much to learn.
Good luck to you and your husband.
Posted by seekhelp (Member # 15067) on :
Thanks Bea. I may see if my LLMD will run this considering it's cheap. You don't happen to know the LabCorp test code, do you?
I too don't understand the result, but it seems like a baseline result was needed. That is WAY out of normal range.
Does any other LLMD buy into this idea or is it just the 'no-named' LLMD's theory?
I'll read up more on this. Hearing that B. Duncani causes the sickest patients is disheartening. I just wonder how I ever got this in the first place and how reliable the testing is through Focus.
Posted by TF (Member # 14183) on :
Wow, Bea. That babs titre is showing one very strong antibody response to Babs Duncani.
I hope and pray that babs treatment is going to be a breakthrough for hubby.
May God bless you both.
Posted by seekhelp (Member # 15067) on :
This is another one of these 'hidden tests' not on LabCorp's menu. Any help is appreciated.
Posted by seekhelp (Member # 15067) on :
I had the same titer TF (1:2,048). It now shows as 1:512. It's IgG so it's tough to figure out the meaning. ALL blood smears come back negative for Babesia, but Bea has provided many reasons why this may be.
Posted by seekhelp (Member # 15067) on :
/\ for Bea. I'm looking for the test code.
Posted by seibertneurolyme (Member # 6416) on :
Seek,
I can't find a test code listed on the lab results -- lots of numbers like account number and patient i.d. etc. Will get hubby to call the local hospital for the test code -- I know they got a fax from labcorp with the instructions -- the blood sample has to be frozen. The test name may be eos cationic protein (rather than the word eosinophil).
Boxermom,
Hubby actually did 2 rounds of primaquine and chloroquine back in 2007 before we moved on to bart treatment. Definitely plan to repeat that again at some point, but probably at higher doses. We used the Liz28 protocol that is discussed on some old LymeNet posts.
TF,
Hubby's current LLMD did say that hubby's titer was one of the highest he has seen in a while. Hubby recently finished up round 8 of coartem -- have no idea if that increased the titer or not. But he had much less herxing symptoms on the coartem than he has had so far on the malarone.
Thinking back maybe the 8 months of alinia in 2009 and the 15 months of bactrim in 2008 -- 2009 were bacteriostatic and keeping the babs symptoms at bay. And there were a couple of months of daraprim in there too. But since June 2009 hubby has not done any babs treatment until the coartem in the fall of 2010. So he was totally off any babs treatment for an entire year.
Bea Seibert
Posted by seekhelp (Member # 15067) on :
Bea, I found what I wanted. I'm reading every page of the 'no name' doctor's book on Babesia. The LabCorp code is 903591. For those with Quest Labs, the code is 37914.
Posted by seibertneurolyme (Member # 6416) on :
Seek,
Glad you found those test codes. You asked if other LLMD's use this test. Apparently a few do. See the link below.
Also, hubby is waiting on an IGeneX test kit. For $135 they will do a babesia duncani titer that includes both IgM and IgG. Maybe hubby will luck out and have an elevated IgM -- otherwise if he has any problems during aggressive babs treatment I can forsee arguing with the docs about whether he has an ongoing active bab infection.
Bea Seibert
Posted by seekhelp (Member # 15067) on :
we think alike Bea. I have considered that Igenex WA-1 test as well. Unfortunately, I have no physician that would order it. I too can see endless physicians stating it's a past infection. Who knows honestly. I can't understand why Focus doesn't have an IgM portion. It's illogical.
Posted by BoxerMom (Member # 25251) on :
Bea - My doc says Fry labs has the more accurate Babesia FISH test.
I was negative for B.microti through Igenex, but positive through Fry.
Posted by BoxerMom (Member # 25251) on :
Also, I agree about bacteriostatic dosages.
I was on Placquenil, rotating Alinia and Mepron every two weeks, for Oct.-Dec. 2010.
I herxed for one day each time I changed the Alinia or Mepron, then stopped herxing.
Now, I'm on Mepron/Zith/Mino, and herxing daily for Babs.
It's so important to get the right combo and high enough blood levels to be bacteriocidal.
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For those with Quest Labs, the code is 37914.