Wish me luck. My ID doc gave me 4 pills of Malarone for 3 days to rid my Babesia WA-1. I took my first daily dose tonight. 2 more until the cure!!
Posted by psano2 (Member # 11711) on :
Sorry, but 3 days of Malarone will only scratch the surface of Babs.
Posted by Brandimc (Member # 22017) on :
your kidding, right? If not,...you need to go to an LLMD asap.
Posted by sutherngrl (Member # 16270) on :
3 days??? Is that for real?
I took Malarone for 2 months and everyone has said that wouldn't be long enough.
Posted by sutherngrl (Member # 16270) on :
Seek, are you making a joke?
Posted by feelfit (Member # 12770) on :
woo-hoo! why bother? that's almost worse than the 3 days malarone/zith that you were treated with over a year ago!
It didn't 'cure' you or I then either ...
good luck!
Posted by feelfit (Member # 12770) on :
he's not joking SG. it's really what they believe is adequate babesia treatment.
Posted by seekhelp (Member # 15067) on :
No, I'm not kidding. I had to sign a waiver form indicating there is no known treatment for WA-1 to get the three days.
I'm working on trying to find a GREAT LLMD who treats the way I want.
Posted by Lemon-Lyme (Member # 19229) on :
Is there even a point to such a small dose? If anything, it just seems like it'll get Babesia riled up... then you'll stop treatment.
Maybe something like Zithro + Artemisinin would at least keep symptoms somewhat at bay until you see an LLMD?
Posted by sutherngrl (Member # 16270) on :
Who had you to sign a waiver, your doc? I never heard of that. If you signed a waiver saying there is no known treatment, then why did they give you any Malarone at all? I don't get it.
Posted by Marcie (Member # 10070) on :
Be careful with treating like that for babs. When I was seeing Dr. L he put me on 3
days of malarone 4 a day. I had a really bad relapse a few weeks after I took malarone for the three days. For me it seemed to wake
everything up and I got really sick. Not saying it is going to happen to you, but just beware.
Posted by B4LYME (Member # 23222) on :
My LLMD doesn't want me to stop or skip doses of medication because he is concerned about keeping the potency of the treatment and avoiding resistence from building up.
I think a short dose like that will just still up the critters. Even my son got 10 days for malaria prevention for travel.
Posted by 2roads (Member # 4409) on :
OMG!!!!!!!!!! Posted by lymebytes (Member # 11830) on :
Babesia treatment takes months or longer. My LLMd rx's 6 per day of Malarone for at least 4-6 months.
I have been at this for over 3.5 years and have just conquered the co-infections.
Posted by seekhelp (Member # 15067) on :
I feel terrible today after my first dose. I feel like I'm internally trembling. Kind of like Lymetwister describes as a bad symptom of his. I had to drive four miles today. NOT FUN.
For some reason today, I'm frustrated beyond belief. It feels hopeless to find a good LLMD anywhere accessible who'll treat Burrascano-style. 12 hours to see Dr. H in NY. Why do I need to live in this horrid, Lyme denying state? Posted by Marcie (Member # 10070) on :
You are not alone, I feel the same way!
Posted by lymebytes (Member # 11830) on :
Seek, Have you contacted ILADS.org to see if there is an LLMd closer to you? You can go to their website, click on the contact link and you can email or call them.
Have you considered or tried Artemisinin in the meantime?
Posted by seekhelp (Member # 15067) on :
Lymebytes, I know all the LLMDs in my area. Good ones don't exist honestly. Not aggressive like Dr. B-type. In my state, you can find a doc to give you some Abx to survive, but not thrive. I think there's a huge internal fear of the medical boards honestly. No one will go that far on a limb. Sorry Marcie you're in the same boat. It's not fair to anyone.
I have not tried ART yet. I plan to.
Malarone is tougher than Mepron so far. Into my second dose and I had bad diarrhea, feel off balance, some muscle pain, foggy,etc. Ouch. I guess jumping right to 4 tablets is aggressive. lol.
Posted by bigstan (Member # 11699) on :
All I can say Seek is all send you a PM soon about some things and my experience with this same doc. I'm waiting for the results of my WA-1 he ordered. If positive I'm under the impression by this doc we will hit it hard.
Just curious do you get the bi-monthly letter from the Michigan Lyme Disease Association? The one I received in the mail today talks about the conference last Aug on "Integrated Topics on Lyme disease".
Dr. M talks about Babesia, Ehrlichia, and Coxsiella and the treatment of each.
He says "Treatment of Babesia all strains is Quinine+Clindamycin, Zithromax+Atovaquone, or Artemisin+Mefloquin."
He doesn't talk about Malarone. I'm suprised he mentioned Artemisin.
"Babesia is transmitted through a tick bite through salivary inculation and has a 1-8 week incubation period."
"This can be chronic if untreated or there is a co-infection. When it presents as a chronic illness symptoms are as follows: cyclic night sweats, cough/can't breath deeply, unrelenting fatigue, headache, and an off balance sensation."
If you don't have it I can mail it to you since you are about 25 minuets away from me. Or I could scan it and send it to an email address. The other docs you know were at this conference. They also speak in this issue. Dr. M.L, and Dr. L (Sag). Dr. M.L doesn't say much..
Posted by seekhelp (Member # 15067) on :
I look forward to your PM Stan. Yes, I read that MLDA newsletter. Good stuff.
I have finished my three days of Malarone tonight. I regret to inform everyone that I'm not cured. Posted by psano2 (Member # 11711) on :
I just read that malaria can be treated with a 3 day course of Malarone, but the dose is 4 tablets daily for 3 days. Not that that will cure Babesia, but maybe this is what your Dr was thinking about. He was just well off on the dose.
Treatment The adult treatment dose is four "standard" tablets once a day for three days. In children, the drug is prescribed by body weight: 11 to 20 kg: 1 "standard" tablet once daily for 3 days; 21 to 30 kg: 2 "standard" tablets once daily for 3 days; 31 to 40 kg: 3 "standard" tablets once daily for 3 days; 41 kg and above: use adult dose.
Although they are similar, Babesia probably requires longer therapy than malaria (just a guess), but if they're giving 4 tabs/day for malaria (granted only for 3 days), does anyone else think that we might be better served to try increasing our dose from the standard 2 tabs/day? If a higher dose for a shorter period of time made the difference, I'd be willing to do it.
Posted by sparkle7 (Member # 10397) on :
I'm sort of tired so I'm not going to post too much...
You really should take a look at the "doctor that we can't mention here's" website about babesia. PM me if you can't figure his name out...
This treatment protocol of 3 days of malerone sounds ridiculous. I can't believe it.
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Kind of like Lymetwister describes as a bad symptom of his. I had to drive four miles today. NOT FUN.