Topic: For those with positive babesia duncani---where were you infected?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I know babesia duncani can be found anywhere in the country, but I just thought I would take a poll and see where everyone who had a positive babesia duncani test was infected, or thinks they were infected. Also approximate dates of when you recall a bite, which could also be helpful.
And while we're at it, maybe list things you have tried that haven't worked, and things you tried that HAVE worked.
Some people may say, "oh, the treatment is the same..." but I'm not too sure. I think we can put our heads together and maybe figure out what will kill or at least subdue this bug.
For the purposes of this, it would be nice if only people who had babesia duncani show up in bloodwork replied, because there is no real way of knowing which species of babesia one has based on clinical diagnosis, I would think. Someone who was diagnosed clinically could have another species that is neither microti nor duncani......etc.
I recently had a 1:512 titer for babesia duncani from Sonoma County Public Health Laboratory. My LLMD thinks I have babesia microti too though because I had a positive Igenex FISH back when it only detected b. microti.
I was bit as a child near Tampa, Florida around 1990. I had fevers of 102-103, while the tick was still attached.
So it seems like at this point I was infected with either microti or duncani. I was never tested and never treated, and developed a few symptoms that eventually faded, and I was healthy for 11 years.
Then I became extrememly ill in 2001, so I may have had another bite at this point that was not detected. The bite was either in Indiana or Eastern Pennsylvania (those are the two places I had been in prior weeks) , if it happened at all. Otherwise, it was Florida/1990 coming back to haunt me.
I would be really interested to see if there are any other Florida people with babesia duncani. Because if I got duncani in Florida, then I believe duncani CAN go into remission on it's own. If I got microti there however....maybe duncani can't go into remission on it's own, because I've been sick since 2001, no breaks.
I don't want to comment on what has/has not gotten rid of babesia for me, because my symptoms aren't clear cut so it is hard to know.
I can tell you that just regular artemisinin increases my night sweats, as did the salt/C protocol. Both of these I feel have some effect against babesia (since I had a clear cut herx). Mepron also did give me a babesia herx once or twice, but overall I feel that Mepron is not the answer for duncani, at least in me.
Anyways, I hope this made sense. So to RECAP:
----WHERE you got it, WHEN, and WHAT medications/herbs do you think help/don't help.
Thank You!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Got it 1996 in northern CA. Used low dose malarone for 5 months, not enough, switched to mepron +zithromax (with art added at the end)for about 3 months.
Think (hope) it is gone.
I got no treatment for lyme or babesia for several years. The babesia symptoms did not start until 1999 when the lyme got bad. So, it was apparently latent until then.
Posts: 8430 | From Not available | Registered: Oct 2000
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
lou-- are you feeling better now?
I just finished up 5 months of Mepron/Zithromax in which I used Artemisinin for the last 2 months.
I have some improvement of symptoms, but they aren't really babesia-specific symptoms.
Interesting that you appear to also have had a "latent" phase.
I am starting to believe that if I can get my other infections under control my babesia may revert back to being dormant.
Which lab found your duncani, lou?
Dizzy--
Thanks for the info. If I were you, I wouldn't necessarily assume you have duncani too, but I wouldn't rule it out. I think that we can all have varying degrees of severity no matter which babesia, lyme, bart or whatever we happen to have.
Either way, I hope you guys see some relief with the Mepron!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Angelica
Unregistered
posted
Infected in N. CA but I have cross tested as well. I was reactive for another strain on my second test and negative for Ducani. My second test was done while I was treating for babs.
Igenex admits they cross test yet people often seem to not hear that fact.
Also Duncani is now found in other states besides CA and Washington.
I did Mepron Zith for 4 months and was told by one LLMD I was done treating. Another LLMD said no I was still reactive so he put me on Malarone (half dose daily) and Biaxin and Amoxy. I did months of that treatment.
He thought my babs was in remission recently but my newest health care provider I recently added in said one pill of Malarone would not do beans and so thinks I need to treat again and that I still present like I have babs because I verbally ramble etc. I plan to do a herbal tincture if I do retreat that my healthcare clinic makes.
I honestly do not know if I really still need to treat babs again or not. It gets confusing when you see more than one LL care giver because they all have different opinions.
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Angelica,
Which ones have you tested positive for?
So could my duncani not really be duncani, it could actually be microti? It wasn't from Igenex, it was from a lab in Sonoma County.
Or maybe more likely is that my Igenex FISH from awhile back was not really microti but was instead really duncani?
I know SkyLord had a positive FISH, but it's my understanding that now it does pick up duncani and back when I had it done it did not. But maybe back then in 2005 they cross-reacted.
I think I'm just trying to figure out if the babesia I have is from all the way back to my childhood in Florida. If that is the case, I think I CAN acheive remission.......because I have done it before.
The kicker is that there is pretty much no way I was bit in CA, WA, or OR. I have been to San Diego very briefly, but it was for a conference thing so I was only out of a hotel for less than a day.
So that is the rationale behind all my questions here.....thanks for listening and for any subsequent advice.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Angelica
Unregistered
posted
My Igenex babs tests were run through that Sonoma lab as well and I talked to some duck who works at that lab in Sonoma and I came away feeling he thinks Lyme and cos are over diagnosed and a lot of hot air.
My first Igenex test I was positive for Duncani and then after that test I received a probable second bite also in N. CA and then I was reactive to Microti. I look at it all as just babs. Sure they say Duncani is harder to treat but treating babs in my mind is treating babs and both kinds have exotic names so pick one or both of them if that helps but we are all still just treating "babs" in my opinion.
One of my bites was in the early 90's but I was bitten before that and then another probable bite was in 2006. That tick was polite enough to wait until I had an appointed scheduled to see a real LLMD but had yet to go in for the appointment. Nothing like a considerate tick. I went in for that appointment with red welts still showing.
I also went to day camp in rural NJ and traveled the world and was bitten by lice in Brazil and sand flies or fleas on some S. American island. I bet I have been bitten half a dozen times in my lifetime by ticks at least. I just did not always see the tick or bug but have had numerous mosquito bites on strange tropical islands. Horse fly bites too and they are know to carry LD.
I grew up with dogs cats and one horse and was stupid enough to sleep in a horse pasture on the ground when my friends horse was about to give birth not that she did it will we were watching.
My advice is try not to get hung up on where you got your bite or what kind of babs you have and just treat until you and your LLMD feel you have treated enough and if there is doubt perhaps retest if your MD thinks it is a good idea.
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Angelica
Unregistered
posted
In my humble opinion not just ticks carry LD or can infect you. I know someone who feels they received Morgellons from a bedbug. I have been bitten by bedbugs in a Best Western.
You could have been bitten by bedbugs in a hotel or fleas in any state.
Most people never see the tick because they are can be very very tiny and you don't often feel the bite.
Even the nicest hotels are known at times to have bedbugs.
Pets can easily be the carriers of many of our diseases and many carry ticks or fleas.
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tickbattler
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posted
During our last visit with Dr. J in CT (famous pediatric LLMD), he said that he is seeing a ton of babesia duncani in a 100 mile area in PA.
Since we live in that area, we were all tested for it through Igenex but were all negative. A few of us tested positive for babesia microti through the FISH test.
Another thing he mentioned is that he finds that the duncani is often resistant to Mepron. Just in case, he added artimisinin to my 4 year old son's protocol.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If duncani is resistant to Mepron, I wonder if Artemisinin alone is enough, or if Dr. J means that you need Mepron plus Art? Hmmm......
Right before I got sick I was in Allentown, PA playing lacrosse in a tournament. This was in May of 2001.
Haven't been healthy since June of 2001.
I feel like if I can figure out WHEN I got sick, that will affect how I approach this disease. If I haven't been in remission since I got it, that means there is something left I still need to kill.....but if I HAVE logged some healthy years since I got it, that leads me to believe I should treat a different way.
That is why I'm so obsessed with the when and where. Thanks for the info. Posts: 4590 | From Midwest | Registered: Jun 2008
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Angelica
Unregistered
posted
How would you treat differently if you had been in remission for some of the time?
I was not completely sick all of the time since I received a bulls eye rash in the early 90's. It was explained to me that the disease goes through cycles. I have also observed stress can bring it back out from remission. I don't think getting older helps either but luckily you are still young.
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Angelica
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posted
"What more can a tick want?"
A nice warm tasty meal unfortunately.
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Hoosiers51
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Member # 15759
posted
Well, I was thinking that if I got babesia in 2001, that means it hasn't gone into remission yet. (option #1)
If I got it in 1990, it did go into remission, because i was healthy from 1990-2001. (option #2)
So if it's option #1, I feel like treating babesia could still be the "key" or at least "part of the puzzle" to me seeing some relief. I haven't gotten there yet, but I would keep trying various combos with artemisinin, mepron, malarone, quinine, clindamycin, primaquine, whatever.
However, if it's option #2 (so say i wasn't reinfected with babesia in 2001, but instead just got it in 1990 and never got it again), then I think I'm gonna just give up on trying to treat babesia for now. Because it obviously isn't a deal breaker as to whether I'm sick or healthy, since I would have in that case had years of health while infected with it.
And treating it hasn't given me some huge lightbulb moment yet, so I'm not going to continue to wait for that moment. Better to move on to something else like attacking the Lyme and Bart. Maybe my babesia isn't so important after all....maybe it isn't even active right now.
I hope that made sense!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My kid tested positive for b. duncani, but known bites happened in NJ. We were in Vancouver, BC several months after the known tick bite. I guess there is a possibility that it was actually picked up in the Pacific Northwest.
I know of people who picked up Babesia on the East Coast while on vacation, but they live in the West. The population is too mobile to assume that a disease will stay in one location. Some doctors don't quite have their heads wrapped around that concept.
Posts: 170 | From New Jersey | Registered: Jun 2008
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posted
I got it in Southern California around Los Angeles.
Lymepool...some doctors still can't wrap their head around common sense... so I hear ya.
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
Just recently diagnosed with B. microti last week, along with HME and Bb.
I got infected in southern NJ probably 15-20 yrs. ago.
Posts: 67 | From south jersey | Registered: Jun 2008
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Angelica
Unregistered
posted
Hoosiers51 I am certainly not a medical expert but if you have only been treating your babs for 5 months so far I would consider treating longer. Maybe you could start bart treatment at the same time?
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Well my LLMD pulled the plug on my Mepron.
In the end I agree with him, because I was only getting sicker and it was clear it wasn't helping me.
Symptomatically, I seem to be suffering more from Bart and Lyme, though I did have the positive duncani titer recently, it was low-positive.
He seems to think my best bet now is lowering my levels of the other infections and then re-addressing babesia later. The idea of abandoning treatment for something I know I have is a scary thought, but I have come to terms with it.
He is a very good LLMD, and in his professional opinion, I needed to start adressing my lyme and bart more seriously with minocycline and rifampin.
The thing is, I don't even have babesia symptoms right now, so who even knows how much it is affecting my well-being.
Part of my desire with this thread is to find out if I got it a long time ago when I lived in Florida, because if that is true I am inclined to believe I might be able to peacefully coexist with this bug.
I realize a lot of people can't "coexist", and that merits serious treatment.
I only have night sweats when I pulse artemisinin. If I'm not on artemisinin, the babesia seems to just fly under the radar. So I think I need to treat lyme and bart.
Later I might re-adress babesia. Or I might choose to do it tomorrow....I fluctuate a lot. I think if I can lower my bart and lyme loads, the babesia will go into remission. I am not advocating this method for anyone else, but listening to my intuition, i think that is what MY body is telling me. At least for now.
The only thing I worry about is pregnancy later in life. If the babesia is just sort of there, but not acute (giving me sweats, etc)....I still worry I will pass it.
But I feel like taking Mepron won't get rid of it, and there is no real evidence that any of the other treatments will do anything but put it in remission. Am I right?
I may order some Enula and take that with the Artemsinin....I just haven't decided at this point. Any advice is appreciated. I realize my ideas are outside the norm, but it seems to me like remission is the goal, and I think I can acheive this without anti-malarial prescription drugs.
If the prescriptions could offer me not remission but total elimination from my body, I would be more apt to consider them. Does anyone know if any of the drugs will do that?
Posts: 4590 | From Midwest | Registered: Jun 2008
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