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colleenrn

IgG positive for babesia duncani (WA1)

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My 6 year old son was negative for babesia microtii and babesia duncani when we tested him for it in April. Even though he tested negative, our LLMD felt he could have it based on his other labs (low WBC and very lowCD57).

 

We decided in August to treat him for babesia with 3 weeks of Alinia, in addition to the daily zithromax he has been taking for months now. Our LLMD said that once we were treating the babesia, he may show up positive in his bloodwork. Bingo- she was spot on. Just got labs back. He still tests negative for babesia microtii, but he is IgG positive for babesia duncani. The lab reads as :

 

WA1 IgG Antibody, IFA

1:256 HIGH

 

Interpretive Criteria: <1:256 antibody not detected

> or = 1:256 antibody detected

 

Can a IgM be run on babesqai duncani? His CD57 remioans low at 24 (was 23 in March). His WBC remains low also.

 

Any help would be so appreciated! I was not expecting this to be positive.

 

Colleen

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Interesting - DD11 has just started treatment for babesia sp. after having a negative Igenex result as well, but the LLMD feels that this may be the reason why bart/lyme improvements are not holding when abx are removed. Her WBC's are at the low end, and her CD57 is 18. I guess a retest for babesia should be done at some point - thanks for the heads up.

 

DD11 has been on mino/azith for 11 days now, and started malarone on Mon. Huge raging meltdowns on Monday and Tuesday at home (she kept it together in school), but yesterday and today (so far) as good as an angel, even with some triggers, best she has been since we started treating June 2011 (there now, I'm jinxed :P ). Mon and Tues just seem a little early for a herx reaction.

Edited by rowingmom

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colleenrn - usually both the IGG and IGM are measured it's weird you didn't get an IGM result.

 

We have been treating WA1 aggressively in our house for 19 months now. We are on our 3rd different protocol since it seems to still be lingering - all three protocols involved Mepron.

 

rowingmom - Babesia seems to get angry very quickly when we add in a new med. We just added Proguanil Hydrochloride (one of the ingredients in Malarone) and saw a herx response in less than 24 hours.

 

My son's CD57 started at 13 in May 2011 and has since dropped to 9. His WBC count is always below 3. Elevated liver enzymes are indicative of Babesia as well. We thought we were chasing mostly Lyme with my son for the last year, but since we are treating for Babesia again with him (mostly my daughter has been treated because she was IGG positive), he's finally showing some physical symptoms (most of his symptoms have been psychiatric).

 

Put your seatbelts on - treating Babesia is a long ride :) I never knew how much patience I had until we started dealing with all of this.

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MDMom-

I am not sure why an IgM was not run on it. I have my phone consult with Debbie McCabe next week so I will ask to run it. I reluctantly did the 3 weeks of Alinia last month b/c I was not so sure he had babesia. Debbie said if he did it would most likely show up as positive after the Alinia and it did. My son's liver enzymes have been on and off elevated throughout all of this. He has been on zithromax since May so I am thinking she will want to add mepron to the mix. His IgG is low as well as the four IgG subclassses, as well as his IgM, so this babesia scares me more than the Lyme did as I am reading about how DIC can be a complication, especially in immunocompromised people. Did you ever use Alinia with zithromax or just Mepron with zith? Do you periodically checks labs for babesia and your son continues to test positive after 19 months of treatment or are you basing it on his elevated liver enzymes, low WBC, and low CD57? TIA.

 

Colleen

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I agree treating Babesia can be rough for at least the first 4 months sometimes longer!!!! We too experienced the resurfacing of rages right out of the gate with younger DS and the appearance of OCD in younger DD (never suffered from OCD previously). Thankfully, the OCD resolved fairly quickly for younger DD and the rages seem to be settled for younger DS now and he is in his 5th month of Babesia treatment. We just tried to take down younger DD on antibiotics and she only made it 10 days before we needed to change back protocols..... it is becoming obvious that her Babesia treatment was not long enough at almost 10 months.

 

Colleenrn: You are fortunate to have converted test results so quickly!! We were hoping DD would have converted results but hasn't yet. However, her IgG 1 and 3 were extremely low, her white blood cells also very low and think she has a difficult time mounting a response. Its interesting as her CAM Kinase II was the highest of all my children but she didn't have any elevated anti-neuronals, both boys did have anti-neuronals and both had more PANS presentation with OCD/TICS.

 

Couple of things I've learned about Babesia. Mepron/Melarone deletes CoQ10 to disable or starve the Babesia. One of our Dr.'s feels it is vitally important to supplement with CoQ10 when NOT using anti-malaria drugs to give them fighting power to fight the Babesia when treating. Plus its needed to effectively fight other infections. However, some will argue you feed the Babesia when supplementing with CoQ10 when not treating for it. You should NOT be supplementing with CoQ10 when actively treating Babesia because you would be canceling out anti-malaria drug. Be aware that the depletion of the CoQ10 can cause what is referred to as Mepron Blues 'depression' and why some Dr.'s prefer pulsing treatment. We did not experience the blues with older DS or younger DD when treating for 10 months to 1 year but my friends son was definitely very depressed when they finally gave Mepron a break after about a years treatment and switched to Alinia.

 

Edit: I wouldn't worry too much about tests results IgG verses IgM but more follow symptom resolution at this point. Again, if you are dealing with many infections it should be more of a 'Whack a Mole' concept and you may have to treat Babesia for while give it a break to focus on Bartonella and then retreat Babesia etc. I'd follow the Low WBC and symptoms over IgG/IgM test results (results will change, antibody response will come and go as you treat).

Edited by SF Mom

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You should NOT be supplementing with CoQ10 when actively treating Babesia because you would be canceling out anti-malaria drug.

Oh dear, I have been supplementing CoQ10. I learn so much from you guys :D .

Edited by rowingmom

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colleenrn

 

Can you tell me where you get babesia test done? My ILADS tested DD8 for babesia through Igenex, nagetive. Now DD8 has been under treatment since August...thanks for you post to remind me I need to do another babesia test..according to ILADS, regular labs (covered by insurance) does not test babesia...I have an appointment with this Dr this afternoon at 4:15..will ask her again.

 

We are following Zhang's protocol for babesia..she herxed on the fifth day..I really should have her tested again. Thanks so much! Hang in there. Zhang's website : www.zhangsclinicnyc.com

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We did the babesia microtti Antibody Panel which tests the IgM and IgG and also babesia duncani (WA1) antibody, IFA through Lab Corp. The babesia duncani only gave us the IgG which was positive. I now am trying (with difficulty) to figure out how to test IgM for babesia duncani. Does anyone know? Given that he was IgG positive for a babeisa that most drs around here say does not exist on the East Coast, I want to test further.

 

Does a positive IgG for babesai duncani mean he has an acute infection?

 

Colleen

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collenrn...

 

I had to look back in my notes from 2011 to answer your question about Zith and Alinia. Yes, we did use this combo in the beginning of treatment. I think we only did one round of Alinia/Zith and then moved on to 5 months of Zith/Mepron. When that combo didn't clear it (my daughter clearly relapsed when we stopped tx), we did Mepron/Azith/Bactrim. This is the combo my husband and I are taking.

 

Both children are taking IV Clindamycin + Mepron (3 packets/tsp/day) + Proguanil Hyrochloride (100 mg 3tabs/day). According to our doc (we have the same one),

WA1 is really difficult to treat. We are proof of that.

 

As for my son, he has never tested positive for any co-infections. We just base the dx on his CD57, low WBC and elevated liver enzymes. He is has low total IGG and low IGG subclass 3 and was diagnosed with CVID, so it's no surprise to me that he doesn't make antibodies to these infections. We are about to test through LabCorp (we usually use Quest) for WAI, and Babesia Microti. Sounds weird, but I am hoping he will come up positive eventually.

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Thanks for all the info!

MDMom-

When you say the babesia has not cleared after 19 months, does the IgM or the IgG remain high or both?

 

SFMom- When you say it is good he converted so fast, what does that mean? Does it indicate the 3 weeks of Alinia started to work?

 

We have been treating for Lyme since Feb., but his WBC and CD57 remain low. His liver enzymes are no longer elevated though. I have been reading that there are other tests for babesia besides the antibody tests. Has anyone done any of these?

TIA!

Colleen

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SFMom- When you say it is good he converted so fast, what does that mean? Does it indicate the 3 weeks of Alinia started to work?

 

 

I think the Alinia is working and your son's immune system is probably a little stronger than my younger DD!!! We too had great results with Alinia but did not manage to get converted results for Babesia. Remember her twin is PCR positive for WA-1 and this is gestational Lyme for her. There is no doubt she has Babesia in my mind or both LLMDs. However, her test results keep coming up negative but her IgG 1s were in the 200's and her WBC was also very low. In my experience it can easily take a year or longer to treat Babesia. We have given treatment a break recently (treated 10 months) and it is evident she needs to be retreated again. In my experience, it is a very long road to recovery with Lyme et al. Wishing you all the best. We have noticed marked improvement in all the kids once we were past the 4 to 5 month mark of treatment for Babesia.

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I just tested positive for babesia duncani (WA1) just like my son. I also just tested CDC positive for Lyme. Had bands 23 and 39 IgM positive. Two weeks later lab Corp says IgG on WB still pending. Not sure what is going on, but IgG should be back by now.

 

I contacted the health commissioner for my state who is telling me the babesai duncani is a false positve that cross reacted b/c it only occurs on the west coast of the US...surprised to hear her say that? Not at all.

Anyway, she said I can have my dr submit my blood to the CDC Parasitic Branch for laboratory confirmation. Has anyone done this? I am going to do it to prove that Babesai duncani is across the US and may not show the same tell tale symptoms as babesia microtti. The Health Commissioner said that for years commercial laboratories have been reporting positive babesia duncani results, but because the people don't have the typical babesiosis symptoms, they are told that it is a false positive.

 

My questions if anyone can help are:

 

1. what treatment are people taking for babesiosis?

2. has anyone submitted blood work to the CDC to prove they are positive?

3. has anyone had to wait a long time for their IgG western blot results?

 

Thanks so much!

Colleen

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This is a warning for all....

 

Babesesia duncani (WA1) is impossible to treat.

 

After 8 months of IV antibiotics, 10 rounds of Mepron + Proguanil Hydrochloride (one of the ingredients in Malarone), my daughter is still IGG positive for WA1. Her symptoms linger, although she is doing much better.

 

We are all being treated in the house hoping that it will help eradicate the nasty worms.

 

I am trying to muster up more patience. There is no end in sight.

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Last week our LLMD added IV Zithromax to the protocol to treat WA1.

 

Only after 2 doses, my children are reporting that they feel better. I'm keeping my fingers crossed that this is the missing puzzle piece!

 

collenrn - like you, we only got an IGG result for WA1 (through Quest). Not sure why they don't run an IGM on this.

 

Our LLMD says that Babesia might disable the immune system in some way leading to an immune deficiency in some people. LLMD doesn't seem to know if the immune system will repair itself once the infection is gone.

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