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Posted by DaveinCt (Member # 5818) on :

I'm starting Malarone tomorrow. Wondering if there's any advice on this one?

I know with Mepron you have to eat a fatty meal for absorbtion....Do the same rules apply for Malarone?

Any other recommendations from any of you on taking it....Those that took it, was the herx pretty strong and/or comparable to Mepron?

Posted by Jill E. (Member # 9121) on :
Take Malarone with fat just like Mepron. Do not take CoQ10 according to several LLMDs although some disagree.

Malarone has made me profoundly fatigued, like I have cement in my body. I was even bedridden the first few days, kind of acclimated, had to back down due to severe GI problems, ramping back up and the fatigue is back. Fatigue is not usually nearly this bad for me, so for me, it's the Malarone.

I have Babesia Duncani, have had it for several years but the test just turned positive, so this is my first true Babs drug and I'm obviously herxing. Had some mild headaches, not too bad.

I never had Babs symptoms until I took Alinia and got air hunger, then Malarone made it worse, then it has calmed down a little.

I am having terrible GI problems on Malarone - seeing all kinds of GI specialists who've never heard of the drug. Talked to the manufacturer who has had reports of abdominal pain and it's listed as a severe side effect. But they don't know if it's causing damage or just pain. My LLMDs don't know what to do with me right now.

However I know many people on much higher doses of Malarone who never had GI problems. I have not had GI problems of significance in five years of treatment so for me, it's the Malarone. Just a word of caution, but I seem to be in the minority.

I work so it's hard with the fatigue - I wish I could stay in bed. Otherwise, I haven't yet had any nightsweats or dizziness or other noticeable Babs symptoms except the fatigue and air hunger.

Posted by DaveinCt (Member # 5818) on :
Hi Jill:

Wow...sorry about the GI distress. I too tested positive for Duncani so we shall see.

Hang in there and God Bless.

Posted by CherylSue (Member # 13077) on :
I've been on 1 malarone for about 21 days now. I also take Cefuroxime (Ceftin) 500 mg. BID.

Yes, the fatigue is bad. I've been experimenting taking it different times of the day. I even tried twice daily for a few days, but decided I couldn't do it.

It does give me loose stools which is a listed side effect.

If I take it too close to bedtime, it gives me insomnia in the middle of the night.

The best time to take it, I think, is late afternoon. I take it with a fish oil gel cap, a salad with salad dressing, or some other fatty foods like a bagel with butter.

I have never been tested for Babs. I haven't gotten headaches with this disease, but it did begin with high 103 fevers, drenching sweats, and a horrible flulike illness.

I also wake up at night with mild sweats around my chest, neck, and arms.

After being treated for Lyme for over 18 months, I still have fatigue and waves of flulike malaise.

Does this sound like babs to you?

I'm hoping the malarone will target this if it is.

Posted by seekhelp (Member # 15067) on :
If you have Duncani, many say you need hardcore treatment to prevail such as Malarone (high dose), ART, alinia, and Bactrim rolled up. 2 Malarone tablets ain't touching that beast. [Frown]
Posted by CherylSue (Member # 13077) on :
What if it is Babesia Microti?
Posted by DaveinCt (Member # 5818) on :
Yes, besides Malarone, I'm taking BactrimDS, ART, and Zithromax....We'll see how it goes.

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