Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Looking for info on symptoms, treatment, etc.
BTW- Docs in Maryland have reported quite a few cases of it here on the east coast .. so if you haven't been tested and think you MAY have babesia.... and were thinking it is only on the west coast...
You may want to take a look at ducani.
Thanks for any info you can share for a friend of mine!
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Hi Tincup,
My three children all have tested positive for it and microti through Igenex, and we live in PA. Our LLMD told us that sometimes Mepron can't get it without the addition of artemisinin.
Now that my boys no longer seem to be tolerating art, I am trying Enula or Cryptolepsis to see if that helps. I know an LLMD in CA uses those herbs to treat it rather than artemisinin.
I have not been able to distinguish the symptoms of microti and duncani, but have noticed lately that when my boys stopped the artemisinin, they started getting more emotional (crying at the slightest thing). I have added Enula for the past 10 days and they seem to be less emotional so far.
Other symptoms that they have that I attribute to babs: night sweats, fatigue (not sleepy, but lying around), one had jaw pain and chest pain and air hunger when we went off babs meds for a short time, insomnia, red ears (possibly babs, not sure), hallucinating colored spots (pretty sure it's babs), sunlight sensitivity (possibly babs, not sure), headache that comes and goes.
Hope this helps,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thank you tick battler...
This will certainly be of help... and I will forward it to her.
posted
I have tested postive for babesia Duncani both on a fish test and Igg. I have heard that it can be a bit more difficult to get rid of. I have been on Mepron 4tsp daily for about 1 year and also Malarone pulsed on occation. I have seen alot of improvement but I am not completely better yet. I just tried Riamet this past month. It seems ok...haven't noticed much improvement. My symptoms were night sweats, chest pressure, muscle pain, dizziness and fatigue.
The only distinct symptom of Babs that I recognized was mid day sweats, not night sweats.
Nick at Igenex recommended that since I was in New Mexico I should be tested for B.microti. However maybe Nick didn't recognize that New Mexico is a western state. (Almost all U.S. states are east of Palo Alto, Calif where Igenex is located.)
So I tested for B.duncani, Igenex #5080. IgM, IgG and FISH were all positive. Nick recommended retesting after treatment at 4 to 6 weeks, and said that 8 weeks would be better unless symptoms returned.
I did the standard Mepron / Zith protocol of about a month. I did it by the numbers except for the first day I took 3 doses about 8 hrs apart, my version of a loading dose.
I had no side effects at all. I did not take any supplements or herbals and the only foods that I avoided were grapefruit and cranberry.
Retesting at 8 weeks was all negative and I've had no return of symptoms in the subsequent 3 months. Treating for Babs has resulted in a marked, almost dramatic, improvement of my health.
Posts: 365 | From Sylvania | Registered: Aug 2008
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How long did you have babesia duncani before you treated. I had it for 4 years and just this past year treated with Mepron and Biaxin. After 7 months I was still positive on a fish test. However, my antibody titers went down 4 fold. What are your thought on that?
posted
bettyg Honored Contributor (25K+ posts) Member # 6147
posted 27 April, 2009 02:28 AM -------------------------------------------------------------------------------- Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
Here's the link to the latest ILAD's guidelines, please read starting on page 18, in fact I suggest reading the entire document ...
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
The reason the treatment for the two might be different is that supposedly babesia microti is not actually a "babesia," and babesia duncani is truly "babesia."
Turns out later on they realized that babesia microti was more appropriately classified as a theileria. Some scientists apparently re-named it "theileria microti," but it seems to me like that name hasn't stuck yet.
So babesia duncani is more similar to the kind of "babesia" that dogs get, not the Long Island "b. microti."
I still don't know if that would account for differences in treatment, since theileria and babesia are very similar...both piroplasms. But who knows.
Here is a quote from Wikipedia (to see the references, just go to the wiki page):
"Theileria microti is a parasitic blood-borne piroplasm transmitted by deer ticks. It was previously in the taxonomic genus Babesia, as Babesia microti, until ribosomal RNA comparisons placed it in the sister genus Theileria."
My whole point is that this could account for the differences we see in treatment. But who knows really.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Honestly, I don't know. And it doesn't seem like there is much of a consensus.
It seems like people with babesia just need to try things until something works. Some people with duncani are not helped by Mepron, but many are.
Some people do better on Malarone than on Mepron.
So my point is that it just seems to vary person to person.
I do know that some Lyme docs are saying that for duncani, you need to add artemisinin with Mepron.
Not sure how much I believe this, but I do believe artemisinin is good stuff.
I think no matter what strain you have, finding what works is simply a matter of experimentation.
I haven't found the answers yet. Still trying. Malarone for me seems better than Mepron though, and I have duncani. Enula and Crypto-Plus (herbal formulas) also seem to be doing something.
Right now I'm trying Clindamcyin/Quinine, but it is way too early to tell if it's gonna help.
I do think people can get better.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Glad to hear the Malarone worked better for you.
I'd like to see how the clindamycin and quinine work....I have not tried that yet.
How long have you been treating this?
Have you done high dosages?
Just curious.
I just started Malarone 4 tabs daily times 3 days then I will be at 3 tabs daily...does that sound familiar to you?
Posts: 219 | From Michigan | Registered: Apr 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My son has Duncani, and is being treated with Artemesia only. His LLD did not think Mepron was necessary. I should add he is also on Zith.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Does anyonelse only test positive on the FISH test? I dont show any antibodies to babesia IGM or IGG...just a positive FISH. Does this mean I dont have either of the two strains that they test for?
I cant begin to tell which infection is causing which symptom. I had air hunger and night sweats when I first became ill years ago.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks so much for your replies. She is reading them as they are posted.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Katrina,
I never did high doses with Mepron, because just 1 tsp X 2 daily made me so tired once we were getting into months 3, 4, and 5...that I knew I wouldn't be able to increase.
On Malarone, some doctors only use 2 pills daily, but some go up to 4 or 5 daily.
I have done 4 Malarone daily, but after awhile, I slowly trickled down to 1 daily, and felt that was at least suppressing it, if it wasn't eradicating it.
It's hard for me to know when my babesia is being treated effectively, because my main day-to-day symptoms don't scream babesia. But when I play around with the meds, I'll get the classic symptoms, and I test positive.
Posts: 4590 | From Midwest | Registered: Jun 2008
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quote:Originally posted by Tracy9: My son has Duncani, and is being treated with Artemesia only. His LLD did not think Mepron was necessary. I should add he is also on Zith.
Hi, Tracy, I saw your post and I was wondering which artemesia your son is on? artemisinin or the whole herb? Is your son's LLD having success with only artemesia?
I've been diagnosed with duncani, and idk which artemisinin to add and how much. My LLMD suggested adding it to the mepron, but I think it was just artemisinin 3 times a day. can you elaborate on what you're doing?
TY!
Posts: 111 | From Nowhere | Registered: Jun 2008
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posted
I had babs duncani. I treated it for almost one year. First with Mepron, zithromax, artimisinin combo. Then with bactrim ds. Then enula, then crypto-plus. I've been off all babs meds for 3 months now with no return of symptoms.
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Lymers-
this is interesting, how did you do with the bactrim DS? I took that and it got me to remission but when I stopped after three months, the symptoms returned.
Now, we don't know exactly if we are dealing with babs or not.
Posts: 1104 | From N.California | Registered: Jan 2008
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