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» LymeNet Flash » Questions and Discussion » Medical Questions » Scare About Malarone Please help!

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Author Topic: Scare About Malarone Please help!
tricia386
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Hi All-

I am suppose to start malarone in 3 weeks.


I am so scared to take it. Can you please share your experiences on Malarone.

At the time I will be starting malarone I will currently be on

Zyrtec
Zantac
Nature-throid
Nysatin
Probiotics
Amox
Probencid
Zith
Plaquenil

I have read horribble side effects about Malarone.
[Frown]

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

Posts: 1752 | From Albany, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
seekhelp
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I'm guessing we see the same LLMD with your huge list of meds. [Smile] I've taken Malarone many times. it's not that bad at all IMO.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
tricia386
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What was your experience with it?

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

Posts: 1752 | From Albany, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
tricia386
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seek I sent you a PM

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

Posts: 1752 | From Albany, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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I think it greatly depends on 3 things -- how much treatment you have already had for babesia, the dose of malarone and how bad your babesia infection is.

Hubby had very few problems with malarone. We thought he had an allergy to mepron and were not sure he would be able to take the malarone. He did get a few hives after a month or so but we stopped the med for 4 or 5 days and restarted it and he has had no problems.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
LymeAware
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I've been on malarone about a month now (1 pill once a day). I had been on lariam for alittle over 4 months before that.

I haven't had any problems at all with it. I always take it immediately after my meal (to prevent any stomach upset and also to make sure the malarone gets the fats from the food I just ate) and it's been fine.

I felt the lariam had helped, but there was still some babesia hanging around. The malarone seems to be getting at the remaining stuff, because I think it's helping!

I seem to be doing a bit better on it in terms of babesia symptoms. No more night sweats and very rare air hunger. Mood is more stable as well, although it's hard for me to know if that is related or not.

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seekhelp
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I just don't know if 1-2 pills a day is enough to do anything to Babesia, but.....
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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I would have to agree with Seek -- I think 1 pill per day may be too low a dose. Hubby has been on either 3 or 4 pills daily once we ramped up. He started at 1 pill every other day for the first week and then 1 pill daily for the 2nd week and continued from there.

Have heard that some docs are using up to 6 pills daily.

Bea Seibert

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LymeAware
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Hmmm... interesting. Thanks for mentioning. Well, I realized a few months ago that my doctor does seems to give doses that are hugely lower than what others recommend....this is on everything. Feels alittle frustrating.

But, I'm going to be seeing a new doctor in June, and honestly the dosing issue was one of the many things that pointed to needing to switch. So, I'm not surprised. Expecting to get more support from my new doctor soon.

However, with that said, I do think the malarone is helping -- even if it's way under-dosed.

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5vforest
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I'm on three pills daily, never had any bad reaction. Starting feeling better after one or two weeks.
Posts: 340 | From san francisco, ca | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Malarone did nothing for me. It used to be referred to as "mepron lite" here!

--------------------
--Lymetutu--
Opinions, not medical advice!

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seekhelp
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it does little to nothing for me either Lymetoo.
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Deb133
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My daughter had been on Malarone 3 months 1x daily. She did great and had no problems whatsoever.

The only reason we are not on it right now is we took a break to do a 6 week parasite protocol.

Deb g

P.S. I realize the dosage may seem lower than what others are on but her LLMD said if one a day is helping then lets keep her there. No sense in hammering her body if one a day is working.

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Sammi
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Malarone did nothing for me either. I hope it helps you tricia.
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tricia386
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ugh...I am so nervous to take it....how long should i wait to see if I notice a difference?

--------------------
Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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hadlyme
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I have had no 'bad' side effects with malarone. It helped with the night sweats big time.

Only took one a day... as my llmd said there was no reason to hammer the body hard with it too...

I feel I was really getting soo much better on it, and now my new work insurance won't cover it.

Back to plaquenil now..... dumb insurance dictating what we take! [Smile]

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

Posts: 941 | From AZ-MT | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
   

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