Topic: What is the ideal way to use malarone to fight babesia?
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I am wondering what is the best way to fight lingering babesia using malarone?
We all 3 have babesia, but it is my oldest son, age 19, who is nearing the end of treatment. I want babesia out of his system after 2 years of using artemesia and a year of malarone. He recently went up to 6 a day but is at the pediatric strength of 62.5/25. He is not herxing. This equals 1.5 of the adult pills. He is 6'3 and 190 lbs.
What dose have people had good results with? Any helpful information you have to share?
His only symptom is swollen glands, he has an ECP of 19 and CD57 of 119.
Please PM if that is a better option for doses.
Thanks so much!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Are you pairing the ART and malarone with zith or biaxin??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My boys are taking zith. My oldest however, is down to one week a month of antibiotics. I questioned this with doctor and he said it would be fine. So he takes malarone every day, but zith one week on and 3 off. He started this pulsing 6 months ago as he has a score of 3 on the symptoms rating list used by most ILADS docs.
Good question.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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sammy
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posted
PM sent Posts: 5237 | From here | Registered: Nov 2007
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Kari- I agree with Bea, swollen lymph glands sounds more like bart. I also don't really trust that ecp test. If he really does have babs that dose is very low.
Posts: 323 | From Michigan | Registered: Sep 2006
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posted
Bea, your mailbox is full!
Posts: 186 | From Germany | Registered: May 2012
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Thanks everyone! I need all the help I can get trying to manage 3 of us at varying levels of illness.
My oldest was never very sick and I wouldn't have known he had Lyme if his brother hadn't become bedbound and diagnosed with Lyme. He had symptoms that we blamed on other things. His labwork was definitely Lyme and coinfections.
The once a month antibiotics started 6 months ago as a way to assure he is near the end of treatment. The theory is that for 3 weeks the buggers can come out if they are there. Then one week on will zap them. If a herx, then still Lyme remaining. He doens't herx at all during the week on full abx protocol. He had ILADS treatment for 1.5 years. I didn't want him in college and have Lyme sneak back up while he is 2.5 hours away from home and 7 hours from our doctor.
Is there a source of information for babesia treatment using malarone? Did Burroscano have a standard dosage?
Thanks everyone!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Can anyone confirm that as an adult their malarone pills are the 250/100 dosage?
Maybe all ILADS prescribe malarone off label at the smaller pediatric dose becasue it is for babesia and not malaria.
My doctor got back to me but wasn't clear on dosage.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
PM sent, my RX is for the adult dose.
Posts: 5237 | From here | Registered: Nov 2007
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posted
PM sent from here also - good luck! I have to ask about the resistance thing - I'm not on the zith or biaxin with the Malerone at the moment, just the rocephin and rifampin.
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Thanks so much. I got the info PMers.
It looks like my oldest son has been on a very, very weak dose. I hope there is an answer coming. It makes me furious to think he possibly could have been done with treatment by now if 12 months ago had the right malarone dose.
This means my youngest is also starting a weak dose. He herxes on artemesia so this may be OK to start but once the herxing stops, I want him bumped up. He is so much better, but I want him to keep progressing. At 17, this disease has been hard!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Got an email from our doctor and my son will start full adult dose malarone as soon as he is home from college. No explanation for the pediatric dose, just a where should I call it into.
You guys helped me know what I needed to advocate for. Thank you everyone!!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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