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Posted 7/7/2013 1:59 AM (GMT 0)
What dose have you taken daily if prescribed Malarone?  It sure is kicking my b***.  My fatigue and breathing abnormalities are off the charts!

Patty

Posted 7/7/2013 2:28 AM (GMT 0)
I am on Mepron, it's almost been 4 weeks. It sure is kicking my b*** as well :( The fatigue and anxiety are off the charts for me.

I am not sure about Malarone doses, but from the research I have been
doing it is best to not back off the Mepron as Babesia has such a short life cycle 4-7 days.

I guess we know that the treatment is working, however, it is so hard to feel like this. Try to detox as much as possible.

Hang in there, many others say that you will feel so much better once the Babesia is under control. I hope that is soon for both of us.

Take care :-) Better days ahead!
Posted 7/7/2013 2:52 AM (GMT 0)
Our daughter was prescribed 1 tab malarone 250mg atovaqone/100 mg proquanil HCl daily with a high fat meal (dinner). She weighs 75 lbs.  She was on it for 5 months.

She tested negative for babesia, and didn't herx from malarone (azith or minocycline either) like she did with tindamax, rifampin and biaxin. But malarone decreased her symptoms like nothing else had. I'm not sure what went on there, but I don't think we would be off abx now if our LLMD had not rxed malarone. Toxoplasma maybe? Who knows. We didn't test for anything other than lyme and coinfections.
Posted 7/7/2013 4:31 PM (GMT 0)
I REALLY appreciate the replies.

WarriorMom (love the name), I, too, am experiencing intense anxiety since starting Malarone. Are you having shortness of breath??? What mg of Mepron are you taking?

rowingmom, I am taking 1 tab 2X daily. My heart goes out for all the children going through this process. Thanks for all the info that you provide.

Patty
Posted 7/7/2013 6:55 PM (GMT 0)
Yes, I have also experienced an increase in shortness of breath (air hunger).

I am housebound and cannot do much of anything. Overwhelming fatigue, swaying feeling, no appetite, headache. I feel awful like the flu x100. I am trying to detox as much as possible, maybe I need to step that up.

I am taking 2 teaspoons a day of Mepron, 10 ml. This is TOUGH!!!
I keep hoping that it is really going after the Babs and trying to stop their cycle. My sweats have gotten a lot better, and that was one of my worst symptoms.

Are you thinking of backing off the Malarone for a break? I thought about it too, but just want to stick it out and hope I turn the corner soon.

Thinking of you!
Posted 7/7/2013 8:51 PM (GMT 0)
I never had the sweats....only horrific chills. Yes, feels like a horrible flu, too, but without the nausea and diarrhea.

I want to go see my sister in Maine (home state) on the 13th. My husband really needs to have a change of scenery and my sister is really looking forward to us visitng. I have put it off for 4 years which is unheard of for me as my whole family resides there so I am going to ask my LLMD if I can lay off the Malarone for a week or so. I do not know the repercussions of doing this so it all depends what he has to say on Tues. To be honest, I am not in favor of stopping the Malarone at this point. I will let you know what he has to say.

Patty xo
Posted 7/7/2017 10:11 AM (GMT 0)
My LLMD just added malarone to the mix. I will probably start it this weekend or next week. He just wants me to do one pill (250/100) for now and even said I can take every other day for now. I just hope this works and I can tolerate it. This past month has been one of the worst.

I heard is can mess with sleep. For those with experience, do you think it's best to take in the morning or evening?
Posted 7/7/2017 11:15 AM (GMT 0)
I've been on malarone twice a day for two months now.
Supposed to take two more months and it's ruining my summer.

Is 4 months what everyone is doing?

Llmd says red blood cells are on a cycle of new cells every 3 months and then one extra month.

It's affecting sleep even on zolpidem.

Therefore sometimes I take only one in morning.

Am I causing it to be ineffective doing this?

DNA connexions gave a positive for this but dont have chills or sweats.

Since babs is only serious if you don't have a spleen or are elderly I'm wondering if this really not necessary to treat.
Posted 7/7/2017 11:25 AM (GMT 0)
Babesia is very serious. It has to be treated or you will most likely remain sick.


Do not take coQ10 it interfers with malorone working.

http://www.gordonmedical.com/unravelling-complex-chronic-illness/babesia-like-organisms-bablo-consideration-signs-and-symptoms/
Posted 7/7/2017 12:42 PM (GMT 0)
Oh my goodness! Just took coQ10. Thanks, I'll stop.
Posted 7/7/2017 1:05 PM (GMT 0)
Dont feel bad...I did the same thing in the beginning . Now your malarone will be more effective.

Take care, Jo
Posted 7/7/2017 1:43 PM (GMT 0)
I took 2 pills once a day - took along with bactrim, doxy, biaxon, plaq, bab-2, bar-1.

When I added in Malarone I found it to be the most harsh.

told not to take with milk thistle or coQ10, do take with a little fatty food.

Yes the fatigue knocked me on my back for a couple months, thought I was going to die. No problems with sleep, but breathing was difficult at times.

Every now and then I would vomit approx 40 minutes after taking, think the doxy combo may have caused this.

I did show great improvements so the suffering was worth it. smilewinkgrin
Posted 7/7/2017 2:13 PM (GMT 0)
I started with 1 pill of Malarone a day and worked my way up over the last 5 months. I am currently taking 2 pills twice a day. I have taken this amount now for two months.

My constant head pressure/headache and eye pain has consistently gone up since taking 3 pills a day. It is unbearable so my LLMD thinks it is not a herx but a side affect of the malerone. I am not sure. She wants me to go back down to one pill twice a day and add cryptolepis.

I have also been taking azithromycin for 5 months but my stomach is a mess so we are going to switch to doxy since I have handled that in the past.

Malerone has helped my breathing but the symptoms that have emerged are scary. I just hope this is a herx. Good luck with the malerone and I'd start low and see how you do.
Posted 7/7/2017 2:55 PM (GMT 0)
I started with 250mg twice a day. After a month I did 500mg twice a day (4 pills total) for several months.

After a few months break, I went back to Atovaquone, but this time did Mepron instead; 1500mg twice a day.
Posted 7/7/2017 5:09 PM (GMT 0)

WarriorMom said...


I am not sure about Malarone doses, but from the research I have been
doing it is best to not back off the Mepron as Babesia has such a short life cycle 4-7 days.

Actually 4-7 days isn't a short life cycle. I believe most bacteria's life cycle is in hours. (That's what ND told me )

And...one of the top LLMD's pulses all his lyme and co's medications - including Mepron/Malarone.
Posted 7/7/2017 5:12 PM (GMT 0)

summer16 said...
What dose have you taken daily if prescribed Malarone? It sure is kicking my b***. My fatigue and breathing abnormalities are off the charts!
Patty

I have a subscription to a lyme treatment book and it says to start at 2 pills twice a day for a few days and then go to 1 pill twice a day.
Combine it with an antibiotic: azithro, biaxin, doxy or mino.
Bactrim can be added to that...or on it's own with the malarone.



I have read online other LLMD's prescribe 2 pills twice daily - but they may be prescribing it pulsed...
Posted 7/7/2017 5:14 PM (GMT 0)
BTW - do any of you feel tired - as in feel like going to bed an hour or two after taking it?


I'm taking Mepron and prior to this - my symptoms have never been fatigue...after almost 3 years of treatment and now on this - and I feel like I need to nap shortly after taking it. But it's actually sleepy that I feel.

I'm thinking it's a side effect of mepron...rather than a herx...because it is so quick after taking it...
Posted 7/7/2017 5:16 PM (GMT 0)

summer16 said...
I never had the sweats....only horrific chills. Yes, feels like a horrible flu, too, but without the nausea and diarrhea.

I want to go see my sister in Maine (home state) on the 13th. My husband really needs to have a change of scenery and my sister is really looking forward to us visitng. I have put it off for 4 years which is unheard of for me as my whole family resides there so I am going to ask my LLMD if I can lay off the Malarone for a week or so. I do not know the repercussions of doing this so it all depends what he has to say on Tues. To be honest, I am not in favor of stopping the Malarone at this point. I will let you know what he has to say.

Patty xo

I hope you are able to enjoy your visit.

I have put off many things, too.... and it just sucks.

It also sucks to have things planned...and not really look forward to going...because of worry - how we're going to be.
I used to LOVE, LOVE vacations....now I am very hesitant...about going...
Posted 7/7/2017 5:18 PM (GMT 0)

Korissa said...
I've been on malarone twice a day for two months now.
Supposed to take two more months and it's ruining my summer.

Is 4 months what everyone is doing?

Llmd says red blood cells are on a cycle of new cells every 3 months and then one extra month.

It's affecting sleep even on zolpidem.

Therefore sometimes I take only one in morning.

Am I causing it to be ineffective doing this?

DNA connexions gave a positive for this but dont have chills or sweats.

Since babs is only serious if you don't have a spleen or are elderly I'm wondering if this really not necessary to treat.

Korissa - do you have specific symptoms that are attributed to Babesia? If so, you want to continue taking the Malarone until they subside and then several weeks more.
Posted 7/7/2017 5:21 PM (GMT 0)

Loutucky said...
I started with 1 pill of Malarone a day and worked my way up over the last 5 months. I am currently taking 2 pills twice a day. I have taken this amount now for two months.

My constant head pressure/headache and eye pain has consistently gone up since taking 3 pills a day. It is unbearable so my LLMD thinks it is not a herx but a side affect of the malerone. I am not sure. She wants me to go back down to one pill twice a day and add cryptolepis.

I have also been taking azithromycin for 5 months but my stomach is a mess so we are going to switch to doxy since I have handled that in the past.

Malerone has helped my breathing but the symptoms that have emerged are scary. I just hope this is a herx. Good luck with the malerone and I'd start low and see how you do.

My head pressure is ramped up on the Mepron...I think it could be a herx. It is a Babesia symptom.
My head pressure is in the front of my head behind my eyes.
Posted 7/7/2017 6:19 PM (GMT 0)
Girlie, I think the head pressure is a herx too. My eyes do concern me but it may be because of the pressure.

It is interesting that the lyme treatment book says to start at 2 pills twice a day and lower. I hope by lowering it will help my constant headache, ear ringing and pressure.

I haven't been fatigued on malarone-yet. Hope your fatigue lets up!
Posted 7/7/2017 6:32 PM (GMT 0)

Loutucky said...
Girlie, I think the head pressure is a herx too. My eyes do concern me but it may be because of the pressure.

It is interesting that the lyme treatment book says to start at 2 pills twice a day and lower. I hope by lowering it will help my constant headache, ear ringing and pressure.

I haven't been fatigued on malarone-yet. Hope your fatigue lets up!

That is one LLMD's protocol for Babesia. I haven't seen/heard that anywhere else though.

Some Dr.'s just start at 1 pill twice daily and stay there.

Others' will ramp up to 2 pills twice daily...

You can drop the dose and see how you do
Posted 7/7/2017 6:33 PM (GMT 0)

Girlie said...
BTW - do any of you feel tired - as in feel like going to bed an hour or two after taking it?


I'm taking Mepron and prior to this - my symptoms have never been fatigue...after almost 3 years of treatment and now on this - and I feel like I need to nap shortly after taking it. But it's actually sleepy that I feel.

I'm thinking it's a side effect of mepron...rather than a herx...because it is so quick after taking it...

Girlie, I had big-time fatigue starting both Malarone and Mepron. The latter was worse for me. I had a really hard time getting out of bed in the morning for a week or so, then it seemed to subside for whatever reason.
Posted 7/7/2017 6:54 PM (GMT 0)

goshawk said...
Babesia is very serious. It has to be treated or you will most likely remain sick.


Do not take coQ10 it interfers with malorone working.

http://www.gordonmedical.com/unravelling-complex-chronic-illness/babesia-like-organisms-bablo-consideration-signs-and-symptoms/

I take CoQ10 on a daily basis. I'm on malarone 2 out of 4 weeks during my treatments. My LLMD has never mentioned CoQ10 not to be taken during the two weeks on malorone. What's the reasoning not to take CoQ10 while on malorone? I've never heard of this and I'm curious, a study if you have it maybe? thanks.
Posted 7/7/2017 7:21 PM (GMT 0)
I have just read (mostly on here) that it can reduce the effectiveness of Atovaquone.


I haven't got any research to back that up...
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