posted
What are you symptoms and what have you taken that has helped this strain.
I have heart palps, sweats, low body temp, headache and pressure, ringing in the ears, blurred vision (in one eye by where the pressure is), shortness of breath and loss of appetite.
I hear this strain causes some different symptoms and people treat it a little differently. I'm thinking I'm lyme free since my CD-57 is at 340 and I never herxed on IV Rocephin or zithromax. So I'm wondering if all these symptoms can be babesia. I was positive by the FISH test and low positive for the Duncani antibodies.
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
In my opinion it for sure can be babesia. I think I'm in the same boat. I treated babesia for 7 months switched to just treating lyme and all my symptoms came roaring back within 3 months. I have had most of the symptoms you have described except blurred vision and I don't know about my low body temp. I also have horrible muscle pain in my legs and my arm has been know to go numb. I have the Duncani strain. I have been on mepron and zithromax. But by far have felt the best and made the most progress on malarone and bactrim combo. Not sure why.
Posts: 45 | From MA | Registered: Sep 2007
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posted
The babesia duncani strain can be tested by IGeneX. It is a Babesia-like piroplasma associated with cases of Babesiosis in the Pacific Northwest. (But I have it in Maryland)
IGeneX recommendation is to test patients suspected of infection with B. duncani by both B microti and B duncani IFA tests.
I am newly diagnosed with Lyme, Babesia Duncani and Bart. I am on low doses of Minocycline and Mycobutin. I guess my md is moving slowly ---does this sound typical?
Posts: 345 | From East Coast | Registered: Apr 2008
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Clarissa
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posted
I came up positive for Babesia Duncani on Igenex but you're LLMD has to request the FISH test.
posted
Thanks for the info. My son's doc just ordered the FISH a couple of weeks ago, so we should be hearing soon. Nancy
Posts: 688 | From Florida | Registered: Aug 2001
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Clarissa
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posted
No problem!
Ironically, I tested low positive (meaning I've been exposed) to/for Babesia Duncani via the Igenex FISH test.
I have NO symptoms so my LLMD does not want to treat. It makes me a little worried knowing I have it but I also don't want togo looking for trouble.
Oftentimes, it will lay dormant and then if you treat it, Lyme and Bart (both of which are in remission for me right now) will come roaring back.
I'm going to take the 'wait and see' approach per my LLMD's recommendation.
cottonbrain
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Member # 13769
posted
Notsosublime, I think we may see the same LLMD;do you see Dr F in Rockville?
He does go slower on the meds, likes to let the immune system do the work. You can PM me if you want to compare therapies.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
My daughter & I both have B.Duncani (which I think is the same as WA-1). She has similar symptoms along with double vision, leg tremors and bad leg pain. Currently in a wheel chair.
For the Duncani, she's on Mepron, Zith & Bactrim plus IM Bacillin for the Lyme.
Extra magnesium is helping with leg pain. Also taking Zeolite and Noni to help with detox.
I don't have any Duncani symptoms, so the LLD is starting by treating the Lyme, but he is going to add Mepron, Zith & Plaquino later.
It's a nasty little protozoa...good luck
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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Ironically, I tested low positive (meaning I've been exposed) to/for Babesia Duncani via the Igenex FISH test.
I have NO symptoms so my LLMD does not want to treat. It makes me a little worried knowing I have it but I also don't want togo looking for trouble.
Oftentimes, it will lay dormant and then if you treat it, Lyme and Bart (both of which are in remission for me right now) will come roaring back.
I'm going to take the 'wait and see' approach per my LLMD's recommendation.
Best,
I think you are confusing the tests here. You can't register a 'low positive' on a FISH test, which is a blood smear. You are either positive, negative, or equivocal. Positive on FISH means 3 or more RBC's noted on microscopy containing Babesia forms. moreover the FISH doesnt make a discrepancy between various babesia species, it is a test for the entire genus.
You must be confusing the FISH test with an IFA for babesia.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
My LLND has me taking Zhangs Artemisia, Allicin, and circ P, for Babesia.
I have found that an eldeberry formula helped with some of the problems with my eyes.
This is not medical advice just sharing personal experience.
Gail
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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Clarissa
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posted
Aligondo,
I'm going to pull my lab results and review what the heck my results were. I had one LLMD tell me it was a "low positive" and another LLMD tell me that it shows that "I've been exposed." Both referred to it as Babesia Duncani.
These are verbatim quotes from two ILADS LLMD's so maybe it wasn't the FISH test but I KNOW I requested it as I knew it was more sensitive.
Nothing can be easy with these test results. I may be pm-ing you after I review when I'm alert tomorrow.
Clarissa
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posted
Aligondo,
Thank you for your PM. I tried to respond but your mailbox was full so I hope the other board members don't mind me posting my Babs Igenex results in public. Any input is welcomed as I'm pretty confused.
Test Name: B. Microti Antibody G/M 1:20 IgM suggests no evidence of infection 1:40 IgG suggests no evidence of infection 1:40 (IgG)-1:60 May suggest evidence of infection. If sample within last 6 mos had titer of 1:640 ot >, patient may be recovering. 1:160 to 1:640 suggests an infection of unknown duration 1:640 May suggest an active infection
B Duncani Antibody Panel: 1:20 IgM suggests no evidence of infection 1:40 IgG suggests no evifence of infection 1:20 (IgM) or 1:40 (IgG)-1:160 May suggest evidence of infection. If sample within last 6 mos had titer of 1:640 ot >, patient may be recovering. 1:160 o 1:640 Suggests an infection of unknown duration 1:640 Suggests an active infection
"Based on a validation study performed at Igenex on 147 well characterized sera, the assay sensitivity was 100% and the specifity against non-Babesia was 100%.
However, there was cross reaction with serum that was positive for antibodies to B microti at a titer ot 1:160 or >. Thus, our recommendation is to test patients suspected of infection with B Duncani by both B microti and B duncani IFA tests.
BABESIA FISH (RNA): NEGATIVE BABESIA PCR SCREEN: NEGATIVE
Sorry to put you all to sleep with my lab results but I'M CONFUSED! Do I have Babesia or NOT? And what strain?
One LLMD was going to treat it (but untraditionally with NO mepron) so I returned to my reliable LLMD who said, based on the facts that I have NO clinical Babs symptoms, that we should not treat right now.
Any advice, analysis or input would be welcomed. I don't want to leave any stone unturned as I want this to be the END of this nightmare.
Forgive me, but I'm not sure you posted your IFA results. You've posted the scale but not your own results.(I think)
I am guessing that your IFA titers showed some evidence of exposure but probably not a super high titer. This is why your LLMD said what he said. But be careful. These IFA tests are targeted at the immunologic reactivity to specific types of babesia...and as in PCR, you could be infected with an unusual strain which is not currently testable.
Your PCR was negative. Your FISH was negative. What this is saying is there is no DNA or RNA evidence in your blood sample of babesia. The PCR is only testing for two strains:duncani and microti. You could have another strain. On your FISH, they labeled your red blood cells with a flourescent babesia RNA hybridizing tag and looked at your cells under a microscope.
If it is negative, that means they didn't see any blood cells that were tagged by the flourescent label. If it had been positive, that means they saw cells light up; since it is a babesia specific label, this would be good evidence of babesia infection in your cells. It is an RNA tag; RNA is produced by active cells involved in protein synthesis. So if the FISH is positive, that is good evidence that babesia are actively synthesizing proteins and facilitating an infective process.
The FISH and PCR are not always positive in active infection. Sometimes an extremely low level of RBC's are infected, and it becomes very difficult for PCR or FISH/giemsa smears to detect them. If you are having active symptoms, and you ARE sick with babesia, sometimes it might take several test runs to produce a positive.
Most LLMDs treat babesia clinically by symptoms. If you are having symptoms...sleep disturbance, photophobia, headaches, fatigue, sweats..etc...you should probably be treated regardless of the test results.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Clarissa
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posted
Aligondo,
Thank you SO much for taking the time for going into such great detail. You should be an MD (are you?) Wow! Impressive. Meanwhile, I can't even look at the results and type them right...I was always so horrible at science. I was an English major.
My LLMD asked me about the following symptoms: excessive sweating brain fog poor memory great fatigue/malaise horrible headaches chills joint pain lethargy photosensitivity
and I have none of those symtpoms. Based on the LACK of clinical symptoms, he's advising not to treat...at least at this point and time.
But trust me, I will NEVER EVER throw caution to the wind when it comes to TBD's. I'm officially a bitter betty/cynic, waiting for the other shoe to drop as far as TBD's are concerned.
I was a congenital Lymie so I won't let it or it's red-headed step brothers get the best of me ever again.
Thanks for your time, thoughtfulness and wealth of knowledge!
So, from what I'm learning from you is that the Babesia Duncani is "in the scale" that "may suggest evidence of infection" as the scale for IgG is 1:40-1:160.
So, with those results, NEGATIVE on Babs Fish and no clinical symptoms, would you treat it?
posted
Without symptoms and any really positive results, it really doesn't make sense to treat for babesia. It is unlikely to be causing your illness. however...if you are concerned about it, you can always have your llmd periodically check pcr and/or fish/giemsa stain.
Again, since you are not experiencing the symptoms, it is unlikely that babesia treatment will help you.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Clarissa
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posted
Aligondo,
Thanks so much for your thoughtful opinion. I've really been struggling with this decision but I do trust my LLMD and want to have faith that it's the right decision.
It's just that, like you and many others, I've been "burned" by these TBD's in the past and I don't want to drop the ball after all of my hard work.
I'm starting to feel comfortable with the decision not to treat but to remain vigilante watching for any red flags that may arise and occasional "check in" testing sounds like a good plan, too.
Thanks again! I will sleep more peacefully tonight.
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