I am having a hard time with Babesia. I had to stop Zithromax almost a year ago, as I got screamingly loud tinnitus from it, which never went away.
Right now I'm on Mepron, but only 1 tsp twice a day (was originally on 2 tsp twice a day).
Both my previous LLMD and my current one don't say to pulse Artemesinin, which I'm on (Super Artemisinin 1 twice a day).
But I know that Dr. K and others say that it must be pulsed, as otherwise the body stops responding to it.
So I have been pulsing, but I'm not sure of the schedule I should use, and how high to dose when I do take it.
And I'm afraid that taking the Mepron without Zithromax, and when I pulse, without the Artemesinin, will create resistance.
What are the protocols recommended by Dr. K and by Dr. S in FL (or anyone else who is well versed in Babesia treatment)?
Any suggestions?
I've taken several rounds of Coartem, the first one last Thanksgiving, caused a huge herx, and helped a lot. The other rounds didn't appear to do anything.
And a current LLMD gave me two rounds of Coartem, when I asked for it, but at 1/2 dose!! (She didn't think that it was a major player then).
I don't know what to do here, but I've certainly been having major Babesia symptoms, although it's also the Lyme, etc.
[ 08-25-2010, 11:19 PM: Message edited by: Rumigirl ]
Posted by TF (Member # 14183) on :
From p. 24 of Burrascano:
"Because of these dismal statistics, the current regimen of choice for Babesiosis is the combination of atovaquone (Mepron, Malarone), 750 mg bid, plus an erythromycin-type drug, such as azithromycin (Zithromax), clarithromycin (Biaxin), or telithromycin (Ketek) in standard doses."
Take Biaxin or Ketek with the mepron. You will not get rid of babs if you don't take one of these antibiotics with the Mepron.
If you can't take any of these, then you can get rid of babs by taking Bactrim DS instead of mepron/zith. But, it takes twice as long. And, pulse the art with the Bactrim.
This is how I got rid of my babs. That was over 5 years ago and I am still symptom-free, enjoying my life.
I took Mepron with Biaxin. I couldn't tolerate zith.
Also, I took art weekdays and took weekends off.
Posted by sammy (Member # 13952) on :
What about taking Mepron with Clindamycin or BactrimDS? Or try switching to Malarone so that you don't have to worry about resistance.
Posted by Rumigirl (Member # 15091) on :
This is really depressing, because all of the abx above have tinnitus and hearing loss as a major side-effect (the macrolides and Bactrim).
I have had that reaction from Zith, from Biaxin, and, if I remember correctly, Bactrim. Never took Ketek.
I already have severe tinnitus and hearing loss, to the point where I need hearing aids in both ears. Errrg! Now what??!!
[Hey, I just looked up Clindamycin, and that doesn't have a high profile of tinnitus and hearing loss---some tinnitus, but not as high as the others. Maybe I can take that!]
When you both say, "pulse the Artemesinin," what dosage and what schedule are you referring to?
And are you referring to the Super Artemesinin (Allergy Research) or the regular Art?
I've also used Zhang's Artemesaie, but it is a lot more expensive.
I wish that I didn't have all these blasted reactions, but I do! I do tolerate some meds fine, but . . .
Posted by TF (Member # 14183) on :
I don't see hearing loss as a major side effect of Bactrim.
Since you are not sure you have had a reaction to Bactrim in the past, you could give it a try.
I took Allergy Research artemesinin 100 mg twice per day on an empty stomach Friday through Sunday of each week since those were the days I experienced very obvious babs flares.
Posted by sammy (Member # 13952) on :
Mepron is used alone sometimes when patients cannot tolerate other meds. If you need to take it alone maybe ask for a higher dose like 1500mg twice daily. This is what I've read for toxoplasmosis treatment.
Taking the artemesinin along with the Mepron 3 days per week might also prevent resistance.
Adding Daraprim is another option. It is an old antimalarial drug that is also used for treatment of toxoplasmosis. It is usually combined with a sulfa med or clinda or mepron.
Your IVIG treatments should eventually help your immune system to better fight and suppress these infections too.
Posted by Rumigirl (Member # 15091) on :
Thank you, guys.
I have a book that Keebler had recommended: "Ototoxic Drugs Exposed" by Neil G. Bauman. It's very thorough. According to that, all of the above meds, except Clindamycin have a high ototoxic profile.
Bactrim is a combo of two meds, both of which apparently are ototoxic. I wish it weren't so complicated.
I could try Bactrim again, but with the Zith, the increased tinnitus never went away. It's supposed to, but it didn't.
You've given me some ideas, though. And I'll have to ask about the Daraprim. Most drs aren't up on the ototoxic side-effects, except that it's well known that the macrolides have that side-effect frequently.
Posted by Rumigirl (Member # 15091) on :
Does anyone know the protocols that Dr. K and Dr. S of FL recommend, esp with regard to Artemesinin?
Posted by lululymemom (Member # 26405) on :
TF brought up a good point about Babs flares. If you take note of your symptoms you will see that there are certain days of the week that you will have these flares. Babs has a 4-6 day cycle and if you supplement with Artemisinin the days that you flare, you will eventually see improvement.
I have learned that you do need to take a macrolide if you are going to use Mepron. I have looked into this before. Biaxin does work much better than Zith as far as side effects.
Posted by nefferdun (Member # 20157) on :
There is also roxythromycin which you can get online. It crosses the blood brain barrier. Ketek is one of the best drugs to use against lyme but you have to be careful of your liver.
Posted by Starfall1969 (Member # 17353) on :
Glad to see this post.
My LLMD suspects babs, because of some of my sx, but all tests keep returning negative.
I am allergic to erythromycin, so he isn't sure what he wants to do treatment-wise, but he did suggest trying art.
I'm just always skittish about new things, especially when, at least lately, my sx aren't severe, just annoying.
Any side effects to art?
Posted by lululymemom (Member # 26405) on :
Starfall: You can always consider the herbal route. That is what I am doing. The Cowden protocol has alot of good things to use. I am using some of his herbs but not all. Also other natural abx can work for you. Read Healing Lyme to get some good ideas.
I have herxed off of Art, and not seen any adverse side effects.
Posted by Pinelady (Member # 18524) on :
Is this a good time to test for toxoplasmosis?
After course of Mep etc. ?
Is there any agreement you need to be off meds for 2 weeks like many suggest for testing with BB?
Posted by Rumigirl (Member # 15091) on :
Does anyone have Dr. K's protocol for Babesia? Or Dr. S's from FL?
I thought I saw a protocol for Dr. K a while ago, but can't can't find it now. It included a high dose of Artemesinin for only a few days at a time, and I forget what else.
Posted by INEBG (Member # 27690) on :
I do not have Dr. K's or Dr. S's protocol for Babesia, but did want to comment about the amount and pulsing of artemisinin recommended by my LLMD for babesia. I take 3 200mg pills twice a day for three days, then am off of it for four days. In addition, I take Mepron (3 weeks on, 1 week off) and Azithromycin daily, and an herbal tincture called A-Bab. I was interested in your post about tinnitis, as this has happened to me and when I mentioned it to my LLMD he didn't seem to know what could cause it. I suspected side effects of one of the meds, but assumed it would go away once I had completed treatment. It's disturbing to learn this may not be the case. I, too, have measured hearing loss in both ears.
Posted by onbam (Member # 23758) on :
Would pulsing be a good idea? Doesn't Malaria get resistant?
Posted by Rumigirl (Member # 15091) on :
INEBG,
Thank you! For the Artemisinin, are you taking Super Artemisinin or Artemisinin by Allergy Research, or Dr. Z's Artemisiae 1 or 2, or another brand?
Yes, be careful of the tinnitus from the Zithromax. Your LLMD should know about that, as it's pretty well known. But many drs don't know much at all about ototoxicity. My previous LLMD had me stop when I told him.
Posted by INEBG (Member # 27690) on :
Hi. The artemisinin I use is made by AllergyResearchGroup. It's hypoallergenic. I get it from my Lyme doctor. It's made in Alameda, California. Their website is: allergyresearchgroup.com.
The LLMD I see told me that pulsing is necessary to maintain efficacy. If you take it every day it loses potency.
I can't believe I didn't run into the tinnitis information sooner. I sure hope it's reversable. Too bad, I've been tolerating Azithromycin very well.
Posted by Rumigirl (Member # 15091) on :
INEBG , you mean that you tolerated zith otherwise---getting bad tinnitus isn't really tolerating it well. Hopefully, it will go away when you stop (but don't continue to take it, assuming it will be ok!).
Any other feedback about Artemesinin protocols or any other ideas?
Posted by lululymemom (Member # 26405) on :
I have never taken abx to treat Lyme, but have constant tinnitus.. It could be a symptom of Lyme or co-infections.
Posted by INEBG (Member # 27690) on :
You are right, Rumigirl, other than the tinnitis, assuming mine is caused by the azithromycin and not Lyme, et. al. I'm definitely following through with my LLMD about the possible side effect and appreciate you bringing it up.
What I was thinking of is that I have a long history of stomach and bladder problems. I was concerned, when I started on abx, that I would not be able to tolerate them because of those problems.