Coartem/ Riamet for babesia - a difficult experience

[Hanna]

I have begun a new treatment : Riamet (Coartem in the US) for babesia : I only took my first dose yesterday morning and since, I am experimenting some bad tachycardia reactions for hours and hours after taking the caplet, together with air-hunger and oesophagus tightness the whole day long.
Not fun.

As many of us -trying a new medecine is often an exhausting and frighting experiment- I decided to go low and slow, instead of "playing" with the full dose (3 caplets twice a day, pulsed during 4 days). I began yesrterday with a baby dose of one pill twice a day. That was not enough to prevent from bad reactions.

Has someone taken this medecine for Babesia?
Had someone had the tachycardia, and was nevertheless advised to pursue treatment / or instead advised to stop? Thank you for your insights on the subject.

For the moment I don't dare adding some RIAMET. It is not absolutely unbearable, but painful , tiring (chest feels heavy, searching for air, heart rate 95 instead of 60-70 at rest) and slightly frightening.

 

[Sushi]

@Hanna

Have you told your doctor about your reaction? I have not tried that medication but had a similar reaction to a med for Bartonella. My doc told me to open the capsule and take only a dose I could tolerate. I titrated up by opening capsules and taking a bit more as tolerated. Now I tolerate the full dose without side effects.

But I'd definitely get your doctor advice with this scary side-effect.

Sushi

 

[Ema]

I've had a really hard time with Mepron and Malarone for babesia. Air hunger, fast pulse, and terrible anxiety as well as muscle pains and increased migraines.

I started out on the full dose, dropped back down and tried to work back up again over the course of about 3 months but eventually gave up. The anti malarial drugs are tough!

Now I'm trying clindamycin which is better but still no walk in the park. I'm only on a half dose after a month.

 

[Hanna]

My heart rate continues to be 95-100 at rest, very unusual for me, 12 hours after having taken

 

[Hanna]

Unfortunately, the doc who advised me for this treatment is on vacation, and I have no ways to reach him.
NOVARTIS which is the manufacturer hasn't replied yet... and I doubt that they will.

this med has a very very long half-life (the main component - lumefantrin- may be still active days long, and there is some risk of cardiac toxicity for people that have long QT intervals. I had an emergency ECG at home yesterday, and the technician wasn't able to calculate the QT... so I still don't know if I may be a candidate for cardiac toxicity.
If this is the case, I am afraid that even if I may tolerate baby doses at first, it won't buil-up with time, and reach a dangerous level.

Today, more than 30 hours after the last dose, tachycardia remains...

Thanks for the help nevertheless.

Oh, and perhaps you know something about cryptolepis (phytoterapy - Buhner), if it has helped ?

 

[Sushi]

Unfortunately, the doc who advised me for this treatment is on vacation, and I have no ways to reach him.
NOVARTIS which is the manufacturer hasn't replied yet... and I doubt that they will.

this med has a very very long half-life (the main component - lumefantrin- may be still active days long, and there is some risk of cardiac toxicity for people that have long QT intervals. I had an emergency ECG at home yesterday, and the technician wasn't able to calculate the QT... so I still don't know if I may be a candidate for cardiac toxicity.
If this is the case, I am afraid that even if I may tolerate baby doses at first, it won't buil-up with time, and reach a dangerous level.

Today, more than 30 hours after the last dose, tachycardia remains...

Thanks for the help nevertheless.

Oh, and perhaps you know something about cryptolepis (phytoterapy - Buhner), if it has helped ?

Can you call a local pharmacist? They should have the same information as the drug company. Funny they couldn't calculate your QT interval??

A long half life is a problem when you take a drug that gives you a reaction--sorry! The one I took had a very short half life. These days, when I try a new drug, I find out what the half life is in order to guessitimate with my doctor a safe initial dose.

Hope this passes soon.

Best wishes,
Sushi

 

[Hanna]

You are right Sushi, in a normal world I could call a local pharmacist, I doubt though that they will give me some answer here, and theoritically I am rather well "placed", with Hubby as a dermatologist. But "service" is not a concept that has some reality here, and I am not cynial, just the way it is.

Each country has its pros and cons, Israel is very good when it's an urgent question of life and death, otherwise the level of service is very very low, somewhat like a developing country.

And yes, the question of the half-life is an important one. I knew it from the beginning but wanted to stick to the doc's prescription. And 48h00 after the last dose, my rest pulse is still around 100 (insted of 60-70)...

An additionnal weird thing has happened too : for the first times in a decade (or more...), I have a low grade fever 37.5C! (99.5 F) What happened?
Maybe immune system is shifting and reacting to the infections?

 

[Gingergrrl]

@Hanna, I am so sorry you are going through all this! I have no familiarity with this med, but is there any way your husband (as a doctor himself) can contact your doctor or any cardiologist who could interpret your EKG results and advise? It's bizarre they could not calculate your QT interval. Tachycardia is the worst symptom to cope with (for me) so I hope you get some relief soon. Forgot if I told you, I lived in Israel for two years in the early 90's and understand the dichotomy of some aspects being very modern with others very ancient like a developing country. Are you stopping the med until you get some answers?

 

[Hanna]

My Husband calculated the QT and it was normal. I can breathe better now .

My Lyme Doc returned from holidays Saturday night, and was kind enough to e-mail me his view on the subject even at midnight! I am very very grateful to him, because otherwise, I wouldn't have had the courage to resume treatment on Sunday, and moreover to get to the full dose.

Tachycardia, fever were present most of the 4 days, but with time, it seems that body has acclimated somehow to the drug and things were smoother. I ended treatment on Thursday night and had acupuncture to calm down the sympathetic system. It worked. And it worked great, because I had additionnal stress from the news and the rushes to the shelter.

Today, I can say I feel a bit better... Perhaps it is linked to the antimalarial, perhaps not. It is hard to draw conclusions with this condition. Anyway, I feel I did the right thing when pushing myself to take this drug. Hope I am not convincing myself. It occured to me in the past. time will tell.

If you lived in Israel, so you know what a PWC or a Lymee may face. Total ignorance and dismiss. that's why I had to seek for a Doc overseas... Sad.

 

[Nielk]

I'm glad to hear that so far this anti-malaria medicine seems to be helping. I hope that you have a peaceful, calm shabbat.

 

[Gingergrrl]

My Husband calculated the QT and it was normal. I can breathe better now .

My Lyme Doc returned from holidays Saturday night, and was kind enough to e-mail me his view on the subject even at midnight! I am very very grateful to him, because otherwise, I wouldn't have had the courage to resume treatment on Sunday, and moreover to get to the full dose.

Tachycardia, fever were present most of the 4 days, but with time, it seems that body has acclimated somehow to the drug and things were smoother. I ended treatment on Thursday night and had acupuncture to calm down the sympathetic system. It worked. And it worked great, because I had additionnal stress from the news and the rushes to the shelter.

Today, I can say I feel a bit better... Perhaps it is linked to the antimalarial, perhaps not. It is hard to draw conclusions with this condition. Anyway, I feel I did the right thing when pushing myself to take this drug. Hope I am not convincing myself. It occured to me in the past. time will tell.

If you lived in Israel, so you know what a PWC or a Lymee may face. Total ignorance and dismiss. that's why I had to seek for a Doc overseas... Sad.

@Hanna So glad you are feeling better and your husband and doctor were able to help. When I lived in Israel it was in the early 90's as a student (long before I became sick) so I did not have many encounters with doctors except for very routine things and I saw private doctors. But knowing the entire system I can only imagine what a PWC or someone with Lyme might face

 

[Hanna]

@Gingergrrl43 Yes, this is one of the things that reminds me that we were "spoiled" in France (I am from Paris). Medical care was far more better there. Though I hear that when it deals with ME and chronic Lyme, the official position in France is still denial...

 

[Hanna]

Six months later I am going to embark once again on Riamet, but this time it will be a three courses marathon, each course of three days, at the maximum dose of 8 pills a day, followed by a two days rest period.

Why ?

In December, night sweats and coughs made their come-back, but on an irregular base, and on a scale of 1-2 (5 = maximum intensity). So I didn't even bothered to call the doc.

But January began right away with intensive night sweat + coughs at level 8-10. Night after night, with yo-yo body temperature. Last friday, my lyme doc said there is 'chance' that babesia is still there and I have to tackle the problem as soon as possible.
In July I took one Riamet course (6 pills/day during 4 days), and I had been symptom free (night sweats + coughs) untill december. So it seems logical, that there is a link.

I am waiting for the drug to cross the mediterranean sea (thanks to dear friends from France), as there is no Riamet here, and even with the agreement of the ministry of health (thanks for the bureaucraty, I went through it in June), it would take two months.

Hope that I will be able to tolerate the dose. I am a bit scared to tell the truth...

 

[Dufresne]

@Hanna,

According to LLMD's and other practitioners knowledgable on the subject the rate of relapse for babesia is very high. The standard Mepron and Zithromax for a week doesn't even come close to eradicating it, and certainly not at the levels of Mepron recommended. Look up what Burrascano, Horowitz, Buhner, etc have to say about it.

Some species may be harder to eliminate than others. The doctors mentioned above treat for a minimum of four months. Most say it's wise to treat in some way for a year and plus. I've not heard of an LLMD starting with Coartem, or one that uses just this drug.

Good babesia meds I've been able to order without problem are the following:
-Cryptolepis and Brucea Javonica (Buhner herbs) -he claims this will relieve babesia symptoms within 90 days.
-Alinia
-Metronidazole and Tinidazole
-Clindamycin
-Azithromycin
-Wormwood and its derivatives
-Proguanil

Coartem is apparently a powerful treatment, and I've come across many who believed it was the key to eradication, but all were using other therapies as well.

If you can't go the Mepron/Malarone route, I'd consider the two Buhner herbs and wormwood. They're well tolerated and can be the foundation of a really solid strategy that your infection will not grow resistant to. Just make sure you don't take the wormwood on its own. You can add in pharmaceuticals as needed.

 

[Hanna]

@Dufresne thanks for your remarks.
In fact, I am using also some additionnal elements that you mentioned :
1. I pulse Tinidazole+tetralysal (tetracycline)+plaquenil one week per month.
2. I have been also taking artemisia annua (wormwood) for two months 5 days on/ week-ends off.
3. I take azythro in combo with tetralysal and plaquenil 12 days/month

I want to rotate the artemisia annua with cryptolepis. I have been a bit lazy to contact the supplier. Living in the middle east havn't made it easier to import all that stuff, and iHerbs was so practical... But they don't have those Buhner herbs.

I'm gonna have a look at Brucea Javonica, Alinia and Proguanil that are new for me.

When you write about wormwood : "Just make sure you don't take the wormwood on its own" - what do you mean ? resistance problem / inefficiency ?

 

[Dufresne]

@Hanna,
That's a sound protocol for borrelia and babesia. You could probably throw another babs med in there, though you have to go by your symptoms. Wormwood is going to work in similar fashion to the Coartem. Cryptolepis would be the one I'd add. Brucea Javonica would be a close second. I always go for the herbs first and then add pharmaceuticals as needed.

Metronidazole seems to be better than tinidazole for babesia. Unfortunately most of the herbs I take have alcohol in them and this can lead to awful headaches when combined with the 'dazoles. So it's trickier for me to go after borrelia cysts and babesia simultaneously.

Buhner most recently recommended cryptolepis along with brucea javonica, taken in equal parts with no breaks, for stubborn babesia (I didn't know there was any other variety). He has also claimed sida acuta is a better herb for babesia than wormwood. I find this hard to believe, but I suppose it varies from person to person. I've a bit of a problem with sida acuta at the moment but am hoping to include it in my protocol soon. He also says it turns bartonella around. I believe he's not sure if it's healthy to take wormwood long term, but the others seem to be okay.

As Klinghardt says, parasites are the smartest of the bugs. Just look at the problem of resistance in malaria. There are strains resistant to all known drugs. As soon as they find another drug and start using it in the problem region the clock starts ticking. The best they can hope for is to stay ahead of it. The same is pretty much true for babesia, but to a much lesser extent as most people don't need to treat their infections.

If your babesia develops resistance to wormwood or its derivatives you'll lose that whole class of drug. This happens when you use them as monotherapy, and it can happen quickly. Years ago after having such an awesome response to wormwood, taken as part of an anti-parasitic protocol, I happened to come across Paul Cheney's work with artesunate and wormwood as it related to ME/CFS. His observations lined up perfectly with my disease and I figured I had an explanation as to why wormwood was so effective for me. So I went out and bought artemisinin. The herb stopped working shortly after that. I never understood why until I tested positive for babesia and learned about the problem of artemisinin resistance. I lost a medication that relieved me of about 50% of my disease. I'm still trying to get back there.

bruce javonica http://www.sagewomanherbs.com/store/#!/~/search/keywords=brucea&offset=0&sort=relevance
cryptolepis http://woodlandessence.com/herbal.htm

Alinia is nitazoxanide, an anti-parasitic
Proguanil is most commonly found in Malarone.

 

[Hanna]

@Dufresne , thanks for all the info and the links.

Now I have well understood the risk of the wormwood monotherapy and I am glad I didn't do that (I had bought a full bag of the wormwood tea in order to follow a daily routine...). On most of the wormwood based supplements, there is indeed some warning not to take it more than 2 months without proper medical assistance. But I didn't think that may be link to resistance.

I have choosen to take the Tinidazole instead of the Metro because I may not be able to tolerate it any more. I explain :
In 1997, one year before beeing diagnosed with CFS, I have begun to suffer from amebiasis (just moved to the middle-east, and that may be the cause). Docs tryed to treat me with 1.5 gr Metro a day initially 3 weeks then several additionnal courses... to no avail!
The more I took the drug, the more I couldn't stand it - neuro symptoms were awful, I couldn't stand up, nor eat... And in 2003, I still had the bugs. Now, I tend to think I couldn't tolerate the treatment first du to a major release of toxins (borrelia + babesia + entoemiba hystolitica). I have been tested for Lyme and co only in 2014 ! (Elisa +)

So when I decided to tackle the lyme with the "azole" I wasn't very confident, but the Tinidazole - though it is not a pic-nic- has been relatively well tolerated so far.

Thanks again for your explanations, I am going to dig deeper

 

[Dufresne]

@Hanna,
The warning on wormwood relates to fears about toxicity, not parasite resistance. This of course stems from observations of absinth abusers tending to lose their minds or end up with nerve damage.

I think metronidazole is a better idea later in treatment with chronic Lyme. Most find it way too much before the pathogen load and toxicities have been reduced.

 

[Hanna]

Hi all,

I am finishing tomorrow my third round of Riamet for babesia. And the heavy night sweats I experimented since december are gone. Big result !

BUT...

I have developped a totally new symptom : nerve pain along femoral nerve with weakness of the quadriceps (more on the right side).
Thanks to 6 months of abx, I had already made progress in energy and movement, and was able to climb stairs, walk more... All that vanished.
The last days have been on my bed. I have now problems with every move that is linked with my quadriceps (stairs, standing-up, etc)

This is very frightening. I don't know the origin of the problem.
1. Compression (L4 ?)
2. Toxicity of meds / nerve damage (I was takingTinidazole when the first signs of pain along the femoral nerves appeared) ?

I have done no movement or experimented shock that could explain a sudden compression.

 

[Dufresne]

Hi all,

I am finishing tomorrow my third round of Riamet for babesia. And the heavy night sweats I experimented since december are gone. Big result !

BUT...

I have developped a totally new symptom : nerve pain along femoral nerve with weakness of the quadriceps (more on the right side).
Thanks to 6 months of abx, I had already made progress in energy and movement, and was able to climb stairs, walk more... All that vanished.
The last days have been on my bed. I have now problems with every move that is linked with my quadriceps (stairs, standing-up, etc)

This is very frightening. I don't know the origin of the problem.
1. Compression (L4 ?)
2. Toxicity of meds / nerve damage (I was takingTinidazole when the first signs of pain along the femoral nerves appeared) ?

I have done no movement or experimented shock that could explain a sudden compression.

The 'dazoles can cause nerve problems. Here's a thread discussing that over on Lament.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/130795#000003