This is topic Coartem/Riamet protocol(s)---what have you done or heard about? in forum Medical Questions at LymeNet Flash.


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Posted by Rumigirl (Member # 15091) on :
 
I have done Coartem/Riamet a number of times. It does help. But the Babesia hangs in there (I do do other protocols, too, of course).

But my current doc gave me an rx for 1/4 of the usual dose, but given for 1 week, every other week with nothing else with it, and nothing else for 3 days after it (a wash-out).

Frankly, this doesn't make sense to me at all! First of all, it wouldn't affect a mouse at that level. And if I do nothing else with it, and

then a wash out of 3 days, every other week, then I won't be able to do tinidazole for 2 weeks straight, as Dr. B said it needs to be taken in order to work.

I am getting really frustrated! I think that I may do what I think is best with the rx that I have (which isn't the full rx for 1 round).

What protocols have people done with it---only the usual 3 days? Other protocols? Other meds with it? (Someone mentioned doing Mepron with it).
 
Posted by Pocono Lyme (Member # 5939) on :
 
Have you done Primaquine?

All other babs meds get it in the blood stream but not the dormant ones in the liver.
 
Posted by Rumigirl (Member # 15091) on :
 
quote:
Originally posted by Pocono Lyme:
Have you done Primaquine?

All other babs meds get it in the blood stream but not the dormant ones in the liver.

Aha! Is it IV or oral?

I'm so sick of Babs! I suffer horribly from it.
 
Posted by Rumigirl (Member # 15091) on :
 
Up.
 
Posted by nefferdun (Member # 20157) on :
 
Some people have had success with chloraquine and primaquine. If you are of Mediterranean ancestry you need to get a blood test first as it can causes a reaction - forgot what(!).

I did a couple of days of chloraquine and had severe side effects. It has a long half life so it really scared me.

I did extremely well with Coartem. I was on malarone, having done mepron, althogether for about ten months. I added Coartem taking rounds of it about every 3-4 weeks. When I did the rounds I did not take the malarone.

Coartem got rid of the babesia duncani for me.

I began to have babesia like symptoms again. I also developed insomnia and was very worried I was relapsing with both babesia and bartonella. None of the drugs I had used seemed to make any difference.

It turned out to be protomyxzoa. Ivermectin knocked it down and I was nearly symptom free for the first time in five years.

So if you continue to treat babesia thinking it is your problem, it might not be.
 
Posted by Rumigirl (Member # 15091) on :
 
quote:
Originally posted by Rumigirl:
quote:
Originally posted by nefferdun:
Some people have had success with chloraquine and primaquine. If you are of Mediterranean ancestry you need to get a blood test first as it can causes a reaction - forgot what(!).

I did a couple of days of chloraquine and had severe side effects. It has a long half life so it really scared me.

I did extremely well with Coartem. I was on malarone, having done mepron, althogether for about ten months. I added Coartem taking rounds of it about every 3-4 weeks. When I did the rounds I did not take the malarone.

Coartem got rid of the babesia duncani for me.

I began to have babesia like symptoms again. I also developed insomnia and was very worried I was relapsing with both babesia and bartonella. None of the drugs I had used seemed to make any difference.

It turned out to be protomyxzoa. Ivermectin knocked it down and I was nearly symptom free for the first time in five years.

So if you continue to treat babesia thinking it is your problem, it might not be.


I had a horrific reaction to Plaquenil (chloraquine) before, plus am having numerous serious eye conditions now, so can't chance it, I don't think.

Yes, I should try Ivermectin probably. I need to know the dosage and where to get it. I don't know if my doc know that info.

I don't think that I am through with Babesia though. I still react with terrible heroes to Babesia treatment, when the treatment is strong enough. Are drenching sweats a symptoms of Protomyxzoa, too??

Although I've treated Babs a fair amount, I have never had enough on-going treatment of ANY infection to get rid of any of them. There is always a treatment obstacle that makes me have to go off treatment, and then I'm back to zero : - (

I'm really losing hope, as the same thing has been happening for so many years now. All different reasons why I am pulled of treatment. Meanwhile, my body continues to deteriorate at an alarming rate.
 
Posted by RC1 (Member # 31923) on :
 
I wouldn't feel so good about that protocol either. I've been doing a round of Coartem every 10 days with Mino, Ceftin and Probenecid.

I have been doing it for a number of months. I'm still having symptoms but they are very short in duration. I feel like it's very close to being gone.

Some are doing a round of Coartem a week for 3 weeks in a row with one week off. I would tell your doc you want to treat more aggressively if that's how you feel about it.
 
Posted by Rumigirl (Member # 15091) on :
 
quote:
Originally posted by RC1:
I wouldn't feel so good about that protocol either. I've been doing a round of Coartem every 10 days with Mino, Ceftin and Probenecid.

I have been doing it for a number of months. I'm still having symptoms but they are very short in duration. I feel like it's very close to being gone.

Some are doing a round of Coartem a week for 3 weeks in a row with one week off. I would tell your doc you want to treat more aggressively if that's how you feel about it.

Thank you, RC1, I just sent you a PM with a question.

If I don't get a better protocol and a breakthrough here, I am going down with the ship---NOT OK!!
 
Posted by Rumigirl (Member # 15091) on :
 
up for Coartem protocol feedback.
 
Posted by Pocono Lyme (Member # 5939) on :
 
Rumigirl,

The Primaquine is oral.

I did it a few times. What seemed to work best was doing the Primaquine first, two weeks, then follow with something like Coartem.

The usual protocol is to get the organisms out of the blood and then do the Primaquine to get it out of the liver.

I did the opposite as it worked for a lymenet member who no longer posts.

Hope this helps.
 
Posted by Rumigirl (Member # 15091) on :
 
quote:
Originally posted by Pocono Lyme:
Rumigirl,

The Primaquine is oral.

I did it a few times. What seemed to work best was doing the Primaquine first, two weeks, then follow with something like Coartem.

The usual protocol is to get the organisms out of the blood and then do the Primaquine to get it out of the liver.

I did the opposite as it worked for a lymenet member who no longer posts.

Hope this helps.

Thank you! I presume that you did the Coartem for the usual 3 days at the usual dosage? My LLMD doesn't rx it that way, since Babesia isn't the same as malaria. But, frankly, that is the way I think I should take it for maximum effect (not enough pills in the rx, however).
 
Posted by Pocono Lyme (Member # 5939) on :
 
You're welcome. The first time I did Primaquine, I did Larium for I think 3 1/2 months and followed with the Primaquine.

I had improvement for a couple of months and relapsed again. I feel it is more effective doing the Primaquine first.

That particular LLMD also did the Coartem differently.

I saved up enough to do it for the usual 3 days.

Another option is Chloroquine and Primaquine.
 
Posted by seibertneurolyme (Member # 6416) on :
 
rumigirl,

Personally I would not take the coartem at the lower dose. I think using too low of a dose of meds can lead to drug resistance.

Babesia infections are very difficult to get rid of as you know.

The primaquine is a good suggestion. Hubby took that once years ago. He had not had a lot of treatment for babs at that time and herxed horribly -- multiple ER visits.

That was something we planned to add to his treatment again at some point in the future.

The ivermectin is also a good choice. It has very very few side effects and can be combined with just about any other med.

And personally I would not be overly concerned about taking the horse paste from Tractor Supply or some other source -- much much cheaper than the human med and no scrip is needed.

And don't forget about the various forms of artemesia. Again no scrip is needed. I forget the name right now but HepaPro sells a gel that has several forms of art combined. You rub just 1/8 teaspoon on your feet per dose. Actually I think it may have the same form of art as in the coartem.

Bea Seibert
 
Posted by ms dixie (Member # 40818) on :
 
ditto everything bea said
Consider ivermectin and albendazole or substitutes PM me anytime - I would advise the parasite protocol rotation, esp the iver and albendazole. The herxes for me cause me to think it hits babesi or a similar pathogen.

Bea is the art gel expensive? Do you know anyone else who had results with it ?

Also someone else posted recently about getting better with liposomal art , I believe from Hopkinton Pharmacy.
 


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