Topic: Results from multiple rounds of Riamet (Coartem)?
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
We're attempting multiple rounds (more than 3) of Riamet (Coartem) for babesia. If anyone else has done this, would you post about
1)how long you've had babs
2)what previous tx you've done, with what results
3)what the Riamet/Coartem results were and what else you were taking at the same time?
As for us: 20 years of babs (and LD, of course); mepron/doxy gives some degree of energy and activity for short bursts (2-4 months) but always ends in relapse.
Have tried Mepron/doxy, primaquine/chloroquine, Cryptolepsis, and I dunno what all else (everything). There's usually an apparent cure for a short time (weeks to months), then relapse. Current sx on Riamet after the 3rd round are ongoing extreme fatigue and muscle weakness.
Bb seems to be somewhat quiescent just now. Have treated for bartonella -- that doesn't seem to be a player at the moment, but who knows. Will be retesting for viruses. We think the other known coinfections have been treated.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
That is one of the few meds hubby has not tried yet.
Other possible babs meds -- Larium, Daraprim, Quinine, Alinia, Bactrim DS. I would probably add Tindamax and Flagyl to that list also.
Maybe Ivermectin -- read in this past week's Sunday Parade insert that it works for headlice so am assuming it is systemically absorbed.
On the herbal front -- have you tried iodine supplements -- Yodoxin (med has iodine as the active ingredient) -- also recently read that iodine is the active ingredient in green walnut hulls which are used for parasites.
There should be a thread here on LymeNet discussing a pubmed abstract using green tea for babs.
Hubby is trying to decide what to do next for his unknown mystery parasite
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Hoosiers51
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minoucat,
Didn't your husband do Lariam too? Or was it something else I'm thinking of....? Because I know we have talked about babesia treatment before.
It seems like Nutramedix Enula is doing a good job of at least "hitting" my babesia duncani. It seems to keep the night sweats at bay. I do high doses of it though, which I read in the book "Insights Into Lyme Disease Treatment" is okay, for duncani.
So I'm doing 2 dropperfuls, twice a day. Keep in mind a "dropperful" is how much you can get the dropper to fill....which is actually only about halfway. So it isn't literally the whole length of the dropper.
Right now that is my only babesia treatment, because I'm working on Bart. But I'm hoping to try Lariam in the next few months.
Another suggestion I would have for you is to try higher doses of Mepron, without Doxy. Doxy decreases the availability of Mepron by 40%. So you may have not been getting the full effect there. And I would take the Mepron with Zithromax or Biaxin.
That's IF you can tolerate high doses of Mepron...I can't. Most people seem to be able to.
Based solely on my personal experience, I would try adding Enula to whatever you do. But you will want to start very low on it. Even 3 drops make me herx at first.
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janet thomas
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Member # 7122
posted
it's the primaquine that's important
riamet or chloroquine only clears the blood but sure does make you feel better. but it will come back.
primaquine may clear the dormant forms but I think you need a longer course than is used for malaria. i am trying this now. primaquine herxes can be tough. a G6PD test is needed before using primaquine.
a new drug shows promise-tafenoquine (also called etaquine) search etaquine australia P. vivax
the canadian pharmacies list it as coming soon
i'll send you a pm of liz28's posts
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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minoucat
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So nice to hear from everyone.
I'm somewhat encouraged after the 3rd round of riamet -- the die off was less harsh this time, and he's feeling more energetic sooner. Which means several hours of being alert and mildly active in a 24 hour period. And it's so nice to find something affordable.
Janet, I PMd you. For the hubby, primaquine/chloraquine helped reduce the babs load in the long run, but was not a definitive fix. He was on it in high dose, pulsed, for over 5 months. I have some posts on it from 2006, if they are still in the archive.
Siebertneurolyme -- aaaaargh. I so feel for you and your husband. LLMD didn't think hubby was a good candidate for Lariam, in part because of possible psychosis. LLMD mentioned Daraprim but decided against it for reasons I can't remember. Glad you brought it up, we might revisit it.
Hi Hoosier! Yep, he's done loooong (over a year, several times) doses of mepron (2 TBS 2x day)/biaxin, mepron/zith, as well as mepron doxy. Helped a lot, but there's always been that %$#^# relapse about 3 months after he's symptom free. And Mepron induces quite a severe depression in him over the long run.
Enula did absolutely nothing for him, 30 drops 2 x day, but Cryptolepsis Plus was fantastic -- he had huge die off herxes from it and improved noticeably; CAT cream also was good; BarOne seemed to help with both babs and bartonella. Plant stem cells haven't seem to have helped.
He also has a great daily detox routine with apple pectin and a chlorella mix, and green clay intermittently. It's helped keep his gut healthy and stave off the worst of the herx. He discovered this about 18 months ago. He thinks the apple pectin is about the best bang for the buck around.
BTW, I'm doing OK -- babs seems to be definitively gone since my treatment 4 (5? time flies when you're having fun) years ago; bartonella seems to be gone for the past year. Bb seems to be present but under control.
I'm working part time and exercising moderately. I fight fatigue constantly and sometimes it beats me, but I do wobble back. I'm pulsing abx for Bb every 3 months for 6 weeks.
I can tell when the Bb is coming back -- clear physical and neurological sx -- but it seems to clear up faster and I stay sx free longer each time I re-treat. I've also been using plant stem cells -- I think they work but can't be sure --; Cryptolepsis Plus which seems to help with the Bb; and BarOne which seems to help I think.
Good luck, everyone. Thanks for the responses, and I'd love to hear more.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
minoucat
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Member # 5175
posted
Forgot to mention the iodine -- I'm using it, hubby isn't (dunno why). I don't know if it helps me or not but it doesn't hurt and it seems like a good idea.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
minoucat
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Member # 5175
posted
just one more thing -- talked about tafenoquine with my LLMD about a year ago. As far as I know it's still in development? Anyone know anything more about it?
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
CD57
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posted
Could you talk more about the apple pectin/chlorella detox? That sounds good (and yummy!)!
Posts: 3528 | From US | Registered: Apr 2007
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minoucat
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1 heaping tsp of Now Apple pectin/fiber in 8 oz water, with 1 tsp chlorella (or in 4 oz water, followed by another 4 oz water -- so you don't have to drink 8 oz of the stuff, but you do get 8 oz water). Daily, 2 hours apart from meds. 2x day when his guts were really upset. Not yummy, unfortunately, but the best thing he's done for his intestines. Helped enormously with general stomach upset, bloating, diarrhea, and cramping.
Start slowly -- 1/2 tsp each -- until you're sure you can tolerate it, especially the chlorella. When he was doing a lot of detox, he took more chlorella separately, and also 1 tsp green clay in 8 0z water (worked up to that slowly, too).
These days, with his guts feeling so much better, he sometimes takes just the apple pectin unless he's feeling toxic.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
[ 07-25-2010, 12:33 PM: Message edited by: janet thomas ]
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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blinkie
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Janet, Am i right that this new drug was tested for microti and not for duncani?
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
My husband and I both did Riament in 2004 but only did one dose. We only had Lyme and Babesia for a very short time before we began treatment. We had been on Lyme abx for 1 year before doing the Riament and feel that we have put both into remission. I personally do not belevie you ever rid yourself of either of these, but can only keep them in check. We never had any adverse reaction to any of the medication other than the first week when we first went on abx for lyme. Take at least 2 courses of Riament. We had done Mepron and Artemisin for about 10 months prior to the Riament.
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janet thomas
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Blinkie-Yes,if you read the study it says B. microti.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Update: Hubby is continuing with repeating rounds of Riamet. Things seem to be slowly improving, with far less die-off reaction (mostly fatigue and acheyness now, not the anxiety, sweats and headaches).
He did the MDL test for viruses -- the first such test in a long time -- and although his titers have come down, he still has a raft of high IGG/IGM numbers for 6 viruses. The PCRs were negative. He started taking Imunovir (antiviral/immune modulator used in Europe for chronic fatigue) which caused him to crash and then start to recoup.
2 months later he added Immunovira (tincture) and restarted Lauricidin and Olive Leaf Extract. They knocked him flat for about a month, and now he's feeling better again.
So for those of you who keep not getting better, take another look at viruses. And whatever other creepy crawlies are out there...it's very easy to think only about LD/(known)Coinfections.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Very effective for Babesia are OXO (a plant root derivative was used for malaria); the ozonated rizoles Gamma and Zeta, and high doses of Artemisinin (only when combined with grapefruit juice). Any of these taken in combination with Phospholipid Exchange made into a Klinghardt cocktail work very well. (Beware of the many soy derived products/supplements - many Lyme patients are "allergic" to soy as proven by the many who have taken the www.allergie-immun.com test and have corrected the dysregulations with the AI drops.)
You may want to google Klinghardt Cocktail inserting these agents.
I have posted on the subject many times. Artemisinin is doubly effective because it punches holes into biofilm disturbing hideouts. Negative reactions can be caused by any die-off -- viruses, parasites, mobilized toxic metals and other environmental toxins, fungi, etc. It takes a multiple approach to repair the ecosystem in us.
Take care.
[ 09-30-2010, 04:32 AM: Message edited by: GiGi ]
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