posted
I found out today that my son has Babesia Duncani. He has a positive blood test through Quest and has just finished a 3 month course of Mepron and zithromax.
His current LLMD does not know he has Babesia Duncani because he has never tested him for it.
I took him recently to see another LLMD for a second opinion of his treatment, and he tested him for Babesia Duncani, and we were told the results today.
This LLMD thinks that 3 months of treatment with Azithromycin and Mepron is sufficient to get rid of Babesia but I am very worried its not, as so many people on this forum need very long term treatment for it.
This news was hard for me to take today, as my son is about to leave for college as a freshman next week. He will not be seeing his LLMD until mid-October and so will not be getting any more treatment for Babesia until he can see his doctor.
I am hoping he won't crash off Babesia meds, although his next set of meds is purely for Lyme, so maybe that will still help him.
Is there anyone here who has managed to get rid of Babesia Duncani?
Does treatment have to take years and years? My son is 17 so he does have youth on his side.
What treatments are better for Babesia Duncani as opposed to Babesia microti?
Are the symptoms worse for Duncani than Microti?
Are the herbs necessary for Babesia Duncani?
My son refuses to take herbs, but will take pharmaceuticals. He is so sick and tired of meds so I don't want to push the herbs on him, and now that he is going off to college its going to be difficult to monitor what he does anyway. (This feels like a nightmare to me!)
My son's symptoms are mainly severe fatigue, cognitive issues and neurological problems. He also has Lyme.
Any feedback so I can feel a bit more hopeful about this would be great, thank you!
Posts: 187 | From Connecticut | Registered: Jun 2013
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t9im
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Member # 25489
posted
Hi oceangirl:
In one of my conversations with Dr. J. he indicated 8+ months of mepron and zith for babesia.
Flip side in reading Dr. H's book he has found a herb krypto?? as a good treatment.
Our daughter was on the mepron / zith for 14 months and we think she is over babs.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
A prominent LLMD prescribed malarone for child. They were already on zith, mino, tindamax, for Bb and Bart. He didn't say how long but indicated the treatment would at least be many months. THen we got a call from office and then we started Eluna herb. THe first herb he recommended. There have been some reports on here on success with ivermectin. Hope this helps.
Posts: 360 | From Massachusetts | Registered: Dec 2012
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Thanks for sharing. I would trust Dr J's opinions based on his extensive experience.
This just leads me to believe I am going to have to get more treatment for my son.
Cryptolepis is a good herb to add, but I can't get my son to agree to taking it. He is sick of treatment and is at the age where he wants to make his own decisions.
I can only encourage and inform at this point but will keep working on it.
Posts: 187 | From Connecticut | Registered: Jun 2013
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poppy
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Member # 5355
posted
Have posted this before. Maybe also do an archive search for previous discussions of duncani.
Anyway, had duncani untreated for at least four years. Started out with probably too low a dose of malarone for maybe 4 or 5 months. Then changed docs and was put on a couple months of mepron + antibiotic. Added artemesinin at the end. Gone.
Thinking maybe a more aggressive treatment to begin with might have shortened the total time.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Poppy, what form or artemisinin- drug or herbal?
Posts: 360 | From Massachusetts | Registered: Dec 2012
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poppy
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Member # 5355
posted
Herbal, in pill form. Think it was probably made by Allergy Research. This has been some time ago. I keep hearing that babesia is now harder to get rid of than in previous years. Don't have an opinion on that, since I only know my own case.
There are some instructions about how long you can take this, but I have forgotten them. Probably in the archives here. Not longterm anyway.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Poppy, thanks for sharing. Well that does make me feel better knowing that you recovered from Babesia.
My son has had this for at least 7 years if not longer. He has responded well to Lyme treatment but is still so fatigued and I think the Babesia is the missing link.
Getting the positive test has now confirmed my suspicion of a few months ago, that he has it. At least we know what to do now.
He has tolerated Azithromycin and Mepron well, so he will be able to manage longer treatment. But I think I need to add in the artemisin for him.
Posts: 187 | From Connecticut | Registered: Jun 2013
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poppy
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Don't think this is what I did though. Just too long ago to remember.
Posts: 2888 | From USA | Registered: Mar 2004
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Amanda
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Member # 14107
posted
So,first I want to say that I got sick in my mid 30s, that I have the lyme and multiciciptable detox genes, and was living in a moldy home for first 7 years of treatment. So please don't get depressed that your son will be like me.
I have seen 4 of the best LLMDS in the country, plus several other LLMDS, NP, herbalists. Also been to several conferences where these people presented.
Almost all of them are saying the same thing, that Babesea duncanii is very difficult to eradicate. All of them are seeing resistance to MEpron, and recommend higher dosages (1 tblespoon 2 x a day). I was on Mepron for 2 years, and the last 2 months was taking 3 tablespoons a day until it finally quit working all together. Some of the LLMDS see better results with malarone, which is basically a lower dose of mepron but combined with another drug in pill form. (Malarone never worked for me)
These LLMDS are all saying that you have to take more than one drug/herb at a time, and that rotating regularly is better. Everybody is different, and you really have to keep at it until you find something that works
If your son is just sick of having to take meds everday (all of us can relate), you could think about Larium. There is an initial loading dose, then you take it 2-3 times a week. Yes, it is true it can lead to ver dark emotions, but I found out early on that was really a die off symptom for me. BUT, you have to watch for that. Larium has been far more effective for me. I can't seem to get rid of it, but it does keep it from being bad.
Right now I do Larium 3 days a week, plus coartem (which is really 2 drugs in one pill) 3 days on 12 days off. On off days I take Cyrptolepsis in a tincture with several other herbs. It is made by Researched Nutritionals. I also take artimisinin. Its tricky with these two last herbals. You can really herx bad from them. At the same time, you really have to take enough to have an effect. Sometimes I think herbasl don't work because people don't take high enough dose. E.G. the Crytolepsis tincture I take 1 tsp, 3 times a day (though I started at half that and hered like hell)
You should look at seibertneurolyme posts. I will post what she told me recently in the post below. Her husband died from all his infections, but I think Babesea was what got him in the end. And I just found out another site member died from Babesea. I know that I was VERY fit and healthy, and within the span of 6-8 hours went from trial running to the hospital for 5 days.
This particular tick infection is one of the few that can actually lead to death, so it isn't a stretch to say keeping Babesea in check is not just a matter of health, but of life. Maybe you could tell your son that, or maybe that would make it worse for him.
OK, I wil post Beas links and post below
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Amanda
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posted
Here is what Bea wrote a few days ago....
Amanda,
Hubby died from ARDS and a splenic infarction (blood clot in the spleen) on 10/9/12. Both are rare complications of babesia. Even though it has been almost 2 years sometimes it seems like it was just yesterday.
I am in the process of filing a medical malpractice lawsuit against the hospital where he died.
I would love his case to get published someday, but right now I need to get the legal stuff out of the way and that includes follow-up discussions with the state department of health and the CDC since his case was never officially reported.
I am also pursuing research with Columbia Presbyterian University in New York where I had his brain and other specimens donated. There are some other tickborne researchers that want to be involved as well once I can get things coordinated.
I have been taking a break from the boards for several months now.
Anyway, to answer you question. Here are 2 links that may help in your babesia treatment.
The first link was posted several years ago by another LymeNet patient who has since died from their own babesia and tickborne infections.
The second link includes most of the general details on hubby's babesia treatment. He was doing really well in the spring of 2012 but then got 2 new tickbites and died 3.5 months after the 2nd new tickbite.
It might be a good idea for you to start a new thread listing your babs treatment history and asking others for suggestions.
Bea Seibert
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Thanks, Amanda, I had read Bea's post, and so when I heard that my son has Babesia Duncani, I panicked as I have heard it can be bad.
I am however going to be hopeful that he will get over this due to the fact that he is young, and in good shape other than tick borne illness, but I will definitely pursue further treatment of Babesia for him.
Posts: 187 | From Connecticut | Registered: Jun 2013
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poppy
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posted
A young person not being closely watched and far from parental care might not be a person who should use lariam. As was stated, some people have had trouble with it, causing psych issues. Not everyone definitely, but it would be hard to know in advance who would.
Posts: 2888 | From USA | Registered: Mar 2004
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I would not put my son on Lariam - too risky. I was just thinking more Mepron for now.
Posts: 187 | From Connecticut | Registered: Jun 2013
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bcb1200
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Member # 25745
posted
Duncani and Microti are different. Microti you get more of the drenching sweats, headache, etc. Duncani, sweats are milder, but it is "meaner." There is worse anxiety, brain issues, etc.
I have Duncani and did Mepron / Zith, high dose malarone, and a bunch of herbs.
I can highly recommend the Liposomal Artemisinin (Artemisinin Essentials) by HOpkington Drug (google it.) It is crazy potent and the best Artemisinin out there.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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