feelfit
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posted
I tested positive for this. Just received my results today. In reading the results, (LabCorp) it says that this is a 'babesia like' organism. What does that mean?
It also states that this is found in the Pacific Northwest....never been anywhere near there.
Are sx the same as for any Babesia, ie Duncani, microti?
Thank you in advance, Feelfit
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Hoosiers51
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Did you take the Quest test for babesia duncani as well?
Just wondering if that came back positive.
WA-1 might be the same as duncani? I'm not sure. But people all over the country are testing positive for duncani, so who knows. These tests are not extremely species-specific....so maybe the multiple people testing positive for duncani have different things anyways. If you see where I'm going with this. Apparently there is cross-reacting going on between species anyways.
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feelfit
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Hummm thanks Hoosiers. I know that I have been tested for Microti and was negative. I do not remember having been tested for Duncani.
This WA-1 result says that: "there is very little, if any, cross-reactivity"
Hoosiers51
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Hmmm that's interesting.
So I guess the question would be, if WA-1 is now considered "duncani," or what? (like was there a name change at some point? or are they different bugs?) Because I remember reading somewhere that duncani was previously named something else. It might be in Dr. B's guidelines, I dunno.
My LLMD told me my positive duncani could even be microti, and he is well-informed about lab testing. But I don't know about LabCorp.
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feelfit
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You are right! I seem to recall now that WA-1 was changed to Duncani. I am just repeating what it says on the LabCorp results page about cross-reactivity.
I personally have no idea.
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tick battler
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I thought that WA-1 and duncani were the same thing. When we get Igenex testing done for "duncani", we check the Wa-1 box. You could always call Igenex to get this clarified.
I could be wrong, but that was my understanding.
tickbattler
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feelfit
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I just Googled. WA-1 is re-named Duncani. I guess LabCorp still calls it WA-1. Just to add more confusion to the already confused!
Feelfit
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seekhelp
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What's the titer? I'm getting the feeling LabCorp issues a LOT of positives on this one. Mine was too. If it's not 1:1,024, supposedly, it's not too relevant based on what I've read. Microti is different. The IDSA says this. I don't buy into it based on my symptoms. We both have some Babs symptoms.
I had a positive titer on WA-1 and it didn't alarm my LLMD at all. No push was made to treat Babesia on an accelerated basis. I'm guessing LabCorp issues positives like candy on this particular lab because it's newer and controls aren't well established.
I'm not surprised you weren't tested. THe fact is most ID docs and some LLMDs don't believe you can get it unless you live out West. Most don't even consider the possibility of travel!
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lymebytes
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Hi Rhonda, Yeah you are going to need Bab's treatment. It is Babesia, just another strain. Although this is more a West Coast parasite, ticks travel as they say with dogs, people, etc.
Sorry to hear this...although finding this may help you make leaps and bounds once you overcome it. Babesia is any form is sort of the "gatekeeper" from getting people well.
Someone else I know was tested for WA-1 recently after years of not much success in treatment. Now she is treating it and doing better.
Hoosiers51
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posted
I have heard from more than one East coast LLMD that they are seeing many cases of duncani on the East coast. LymeMD said he sees it just as commonly as microti, if I am remembering his words correctly.
And Dr. J (pediatrician) said there is a big pocket of it in Pennsylvania....but I'm sure he has more to say on the issue too.
The main question in my mind is....is what they are finding in these duncani/WA-1 tests actually duncani (which would not surprise me), or is it another species of babesia that is similar and causing the test to be positive (another strain cross-reacting)?
I think both are possible.
I tested 1:512 for duncani with one lab, and just to reassure people, I did also test positive on the Igenex FISH. To be positive on the FISH test, I think they need to find at least 3 cells that "light up" with the bug. Then 1-2 cells is borderline. Does that sound right to anyone else? I'm pretty sure I read that, unless I dreamed it up.
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posted
Right, WA-1 = Ducani, Ducani = WA-1. But, like everyone has said...who knows if it's another strain variant etc...grrr...
FF...this is great news! Well, sort of anyway, don't you think? I know you've really struggled and have been treating 2 years now. This could be a huge factor in getting you well. I sure hope so. Keep up the fight and the hope - as hard as it can be (as many of us know all too well).
Take Care. TS
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seekhelp
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But Feelfit has aggressively treated Babesia over the last year I beieve so the strain must be sort of unresponsive. I have not had any 'real' treatment for Babesia dose wise so I'm not ready to make a statement yet if I could be helped by treating it.
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feelfit
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No, I have treated Babesia over the last 4 months. The first 3 were with Zith/mepron and I had '0' response.
Month 4 I was switched to Biaxin/mepron and saw a 5 day span of some clearing...the first disernable response in two years. My headache let up. It was short lived.
Now I am seeing new doctor. (Lymemd). He tested me for WA-1-Duncani. New protocol is Biaxin/Malarone, plaquenil, and Bactrim DS.
I have not started the full protocol becuase of some itching, increased mucous production, and tight throat. I am wondering if this is a response to this particulair bug?
Seekhelp, you responded similairly?
Thank you Dana, TS, TB, Hoos, for thinking this out with me. I believe that it is a co-infection that holds me back. Have never addressed Bart either and this protocol supposedly has some affect against that as well? (bactrim).
I am hoping to stabilize and that my liver tests are ok so that I am able to proceed.
Feelfit
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tick battler
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posted
Dr. J once told me that babs duncani needs artemisinin along with the Mepron to kick it. He thinks Mepron/zith alone will sometimes not address it.
I will be asking him again about this, as it appears my son is having a hard time tolerating artemisinin now and he has tested positive for babs duncani.
tickbattler
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posted
Ugh, didn't realize you'd treated babs. Hopefully, your new protocol will get you somewhere. Good input on the artemisinin, has that ever been added?
I treated babs for almost 5 months, Mepron/Zith/Art and at one point malarone was added in. I can't attribute what infection is responsible for what symptom as there is so much overlap; I never had the headache symptom. I did, however, have night sweats. After a few herx-type sweats during tx, I've not had sweats since (knock on wood).
I hope you see some progress soon FF; sorry for your struggles. I, on my own accord, stopped abx about 8 weeks ago and have been rifing every 7-10 days, done 5 Rife sessions...time will tell. I do see a new LLMD later this month and will make some decisions around my tx at that point. I'm sure I'll start back on abx within the next while.
Good luck FF. TS
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seekhelp
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Feelfit, you forgot one part of my question. Was your WA-1 titer 1:256 or higher?
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Hoosiers51
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Mepron is vastly overrated, in my personal experience. I'm not trying to dissuade anyone from trying it, because it seems to help many many people, but if it doesn't work, join the club of us that took it and are still scratching our heads, wondering why we still have it.
It's okay, but for me didn't eradicate it. I didn't do more than 5 months of it though, because I could not tolerate it. And I didn't go higher than 2 tsp per day, again, because it was making me very weak and fatigued.
I wasn't taking anything with it that interacts with it, and was loading up on fat.
I'm not even sure if 4 Malarone/day will eradicate mine. I'm thinking herbs NEED to be combined with either anti-babs meds or anti-babs antibiotics like Clindamycin or Zithromax.
I have herxed just as much on the herbs as the meds, if not more.
Also, just because you test positive for it, doesn't mean it's causing symptoms....so if eventually treatment fails, you could also just consider that your symptoms are due to Lyme.
I herx on the babs herbs, so I'm sure it's still there....but I really don't know how many of my day-to-day symptoms it causes. Could be a lot or a little.
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feelfit
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Right Hoos, how do we know, ever? I did 1 1/2 years of lyme tx including IV 2 times. Did not touch my Headache, or much else.
I did mostly monotherapy for those 1 1/2 years.
I am hoping that I see better results with this combo protocol. Otherwise, I am at a loss.
Seekhelp, I got my results, it says: > 1:256 High It also goes on to say: "WA-1 is a Babesia-like piroplasm associated with cases of an illness similar to babesiosis in the Pacific Northwest. Little, if any, crossreactivity occurs between Babesia microti and WA1".
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Hoosiers51
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Oh okay....so they just mean you probably don't have babesia microti, when they mean "little cross-reactivity." So other strains could be cross-reacting, but it is not microti. But basically you are lumped in with all us duncani people.
I would just try a bunch of different things for it, and see what works best. Don't rule out Malarone.
I remember that seekhelp said he responded well to Clindamycin, and in my opinion, it could have been treating babesia duncani. Clindamycin can kill malaria and toxoplasma. So it might work. They might not be using it much anymore for babesia microti, but who's to say it isn't better for duncani? Just my opinions.
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feelfit
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That could very well be Hoos. I remember that Seek said that he felt great on clindamycin too.
I know that we just have to keep trying until we find something that gives us a one up. I am done staying on a med for 4 months without any improvement though, I am sure of that.
TS good luck on the Rife. Please let me know how things pan out with this for you. As well as your new doctor.
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seekhelp
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Yes, Clindamycin did help, but unfortunately my LLMD's '10-day protocol' isn't nearly enough in the real world from what I've read. I had an ID doc Rx it for ASO titers too. It helped a but. Both docs I've had are scared to death of it unless for short periods. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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cactus
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Hey feelfit, I've been positive for microti and duncani. (Glad you figured out they are the same thing.)
My LLMD as well has been positive for both, and thinks she contracted it here on the east coast.
But - the reason I'm jumping in here is that it seemed to me that clearing duncani was harder than microti.
I felt that it contributed to the many babs relapses over the years after thinking we had adequately treated it.
Some people here used to feel that malarone was more effective for duncani, so perhaps your new protocol will be helpful.
My last babs treatment was Mepron, Biaxin and Bactrim. Plus we would have added artemisinin too, but I don't tolerate it well.
I think there is a lot of value in rotating our abx protocols every few months, esp when treating babs.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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feelfit
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Thanks Cactus for the input.
Here is a thought that I have. If dx'ed with babesia we are never allowed to donate blood...not that we would anyways. But my point is that the Red Cross screens for this......
So, in light of this being banned for life, does this mean that we are always potentially infected carriers? It must. That tells me how hard this must be to get rid of.
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cactus
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Hey, feelfit, great minds think alike...
I too think that it's possible that we will be carriers of babs for life, and part of the reason for my thinking that is the Red Cross issue.
Once you get your symptoms under control, I think that keeping the immune system as strong as possible is one of the best things we can do.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Dr. J wants my daughter tested for WA-1 at the Dept. of Health in Santa Rosa CA. They said I need to get the blood drawn in NYS and send it myself. Has anyone else done this? I don't know why they didn't just send it Igenex with the Babesia Microti test...
thanks,
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Mine was too. If it's not 1:1,024, supposedly, it's not too relevant based on what I've read. Microti is different. The IDSA says this. I don't buy into it based on my symptoms. We both have some Babs symptoms.
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