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» LymeNet Flash » Questions and Discussion » Medical Questions » How long on malarone -- two months enough?

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Author Topic: How long on malarone -- two months enough?
Vermont_Lymie
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How long did you stay on malarone? Was it a babs cure for you?

It has been difficult to stay on malarone these last two months
-- because it makes me feel depressed and on edge.

But on the other hand, it has been possible to stay on it because
of the positive changes that I have seen in 2 short months -- my
body has never felt better. My lungs are clearer than they have
been in years, and it must be the malarone, as it was the only
big change in my treatment two months ago.

Saw my doc today, who said that for many folks, two months is
enough and I could take a break from malarone as I requested,
to see how I do....

I am a bit afraid to go off of it, because my lungs and heart feel
so much better, but he does not think that it would hurt (e.g.,
cause resistance in the babesia in case I need to go back on
it).

what do you guys think? Any thoughts or experience welcome!

I have also employed some of the Buhner babs treatment;
red root, pulsing artemisin, boneset tea.

Thanks!

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sixgoofykids
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I've been on Mepron for 3 months and they're talking about changing me to Malarone next month. I doubt two months is long enough, but maybe changing to another babs protocol would help.

--------------------
sixgoofykids.blogspot.com

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Vermont_Lymie
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Hi Six Kids --

thanks, I hope the malarone works well for you!
I found there was an adjustment period -- that
the first week was fine, but then the next four
weeks on the malarone were a bit difficult.

It was either a babs herx, or an adjustment to the
malarone itself.

Either way, I was glad to hear from my doc that
resistance should not be a problem if I need to go
back on it for a while....

Take care!

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tosho
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Vermont,

I tried malarone with zithromax for 11 days.
I wrote 'tried' because I don't know if I have babs.
I had no reaction to it.
I think: like with everything in LymeDisease, no reaction doesn't mean not having pathogen.

But, can You write what was your reaction when You took malarone?

I also tried boneset tea and art.
Also no reaction:)

Take care

--------------------
[Bb WB igm+] [B.henselae PCR+] [Chlamydia pneum.igm+igg+] [EBV igm-igg+]

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Vermont_Lymie
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Yes, my reaction to malarone changed a bit each
week, and seemed to evolve. Either it was a babs
herx (probably), or I just was getting used to the
medication.

The first couple of days, I would feel dizzy after
taking it. Within the hour. A bit lightheaded.
Maybe a twinge of nausea a few times.

Then, week 2, I had such a stiff neck that I could
not turn my head in one direction. It lasted an
entire week. I had not strained my neck in any
way, and I also noticed that my anxiety level
increased around this time.

Felt really awful for the next few weeks. It is
hard to fully describe, but I would say that my
normally somewhat friendly, outgoing and confident
personality changed, and I became incredibly
uptight and uncomfortable in my own skin.

I had difficulty sleeping during the first month
on malarone too.

Sometime in the first month, I had some nights
where it was really difficult to breathe. The
air hunger was intense.

Then, sometime after 4 weeks, I noticed that my
breathing was better than it had been in years.

Maybe 10 years. I have been diagnosed
with asthma for many years now, and the last
month is the only time that I was able to take
a deep breath without pain -- in years!

My energy is better, and my angina has subsided
too during the past month or so.

On the other hand, my neuro and cognitive symptoms
have only stayed the same (not good) or gotten
worse during this time.

So, I have a mind-body split. [Smile]

I want my mind back, even as I am grateful for
the increase in health in my body!

Tosho, 11 days may not be long enough to see a
difference. If you may have babs, why not try
the medicine your doctor prescribes for one full
month? May be helpful..

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MommaK
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Hi!

My daughter tried malerone for 6 weeks. Orignially it was supposed to be 4, but she had to have her dose lowered due to severe reactions (toxic die off I guess) and we didn't waste the medicine. LLMD thought the short course would do the trick since she had not been ill as long as most of his patients.

It did great- once she stopped the meds she felt so much better! For about 6 weeks, then now she is feeling as bad as ever. In the meantime she had started abx for bart. LLMD said to take a break for herx, but no relief. I think it's a babs relapse. We changed abx, but no change in symptoms.

Waiting on the blood smear test to see if babesia is visible in her blood. I read here that the life cycle of babesia (don't know if that is all species) is 4 months and that you should treat 4 months minimum.

I would love to hear from others about their experiences! Thanks for asking the question.

MommaK

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Vermont_Lymie
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Thanks MommaK -- I have heard 4-6 months also, from
other lymenetters.

Though my llmd says it really varies for people,
and he said 2 months is enough for some.

I hope your daughter gets better soon!

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valymemom
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Dr. B's PA told my son a minimum of 5 months treatment for babs.
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Beverly
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Hi Vermont_Lymie,

I was treated for Babesia for over two years with great results. I did take a break because I had some stomach problems and just recently went back on my meds for Babs. So far no problems with resistance, I still herx.

I did have some bad herxes with Babesia treatment but overall it made me feel so much better.

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Geneal
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My LLMD prescribes 4 malarone a day for 30 days...

This can be repeated for up to 3 months...

I just finished my third month about 2 weeks ago.

I had my worst babs herx in the 3rd month!!!

I no longer have night sweats, breathing has significantly improved,

although I still occasionally have air hunger.

I've just started having pain in my jaw and teeth..

My neck is starting to hurt again too.

Some stabbing pains in head and ears are noticed for the first time in 3 months.

Bad news is I just started bart treatment.

Good news is that my LLMD said when bart treatment is finished,

I can go back to malarone. Yeah!!!!

My husband is also on malarone 4 x a day....

He is having issues with babs and fatigue about every 5 days....along with continued night sweats.

Weird thing is malarone seems to be bringing out

some bart symptoms with him....sore soles of feet and burning sensations.

I am not sure of your dosage.

You may want to see how you feel and talk to your LLMD about it.

Good luck.

Hugs,

Geneal

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Vermont_Lymie
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Thanks valymemom, Beverly and Geneal for your
feedback -- it is so very helpful and appreciated.

valymemom, it is good to know what Dr. B thought
on this, I wish that he did not retire!

I am going to continue treating babs for the time
being, though I will probably take a short and
needed break from it soon.

Beverly, I am glad to hear that you feel better
after babs treatment, and my best wishes for your
health!

Geneal, I am in awe of your ability to withstand
malarone in that quantity! Sounds like it worked
great for you, and I hope you continue to feel
good and that Bart treatment works great (keep
us posted!)

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