seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
3 days??? Is that for real?
I took Malarone for 2 months and everyone has said that wouldn't be long enough.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Seek, are you making a joke?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
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!
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
he's not joking SG. it's really what they believe is adequate babesia treatment.
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
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?
Posts: 584 | From NY | Registered: Feb 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
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.
Posts: 323 | From Michigan | Registered: Sep 2006
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posted
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.
Posts: 144 | From PA | Registered: Nov 2009
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
OMG!!!!!!!!!!
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
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.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
You are not alone, I feel the same way!
Posts: 323 | From Michigan | Registered: Sep 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
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?
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
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..
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
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.
Posts: 975 | From California | Registered: Apr 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
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.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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