5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I am starting down the road to treat my babs.again But this time with artemisinin.
Has anyone beaten this beast into remmissin?
From all the posts I have read it seems as soon as the treatment(mepron,ect..) is stopped people seem to relaspe fairly qickly.Seems a bit discouraging.
Any success stories?.
Thanks
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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liz28
Unregistered
posted
Hi. I just started primaquine, after relapsing for the millionth time on mepron and artemisinin. This abx is supposed to get rid of all relapsing forms of malaria, and some, but not all, forms of babesia.
It feels like I've been run over by a mack truck, then dropped down a manhole, I'm so exhausted. Luckily, if you can't handle this abx at it's full dose over a two-week period, you can take lower doses over an eight-week period. If this continues, it's always possible to slow down.
Also, I took a G6PD deficiency test before starting this abx. And I've stopped almost all other abx, and am just taking doxycycline with artemisinin and mega liver support. No ketek, no rifampin, no nuthin'.
When taking maintenance abx for babesia/malaria, I actually did better by just taking 5 ml of mepron per day with ketek, but up to 600mg of artemisinin per day. This would not have been sustainable over a long time period, which is why primaquine was worth a try. Another reason was reading just how many people relapsed on mepron. It's almost everyone.
You should know, though, that I never tested positive for B. microti, and caught this relapsing fever in a swampy, oceanside area of the northeast where relapsing malaria--the real deal, plas. vivax--has actually been reported. So if this abx does work, there is not a guarantee it is treating babesia.
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks Lix28
I am to go slow.I take Mepron,doxy,bixain,art,palquinal,& last two days tinamax. For for 4 days & then 10 days off.I have to go slow because of my bad stomach.
From what I have read bab's seems tougher to treat than lyme.If that's possible.
My personal mantra is never give up & never give in but this is pushing me to the limits of my endurance.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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What dosage are you doing with primaquine? Also, where did you get the information about it being effective for relapsing forms of malaria?
I brought it up with my LLMD and she had never heard of it. I want to try it. Also want to try Bactrim.
I've had some progress with malarone, tindamax, and Paragone, but it's been limited. Same problem as with most everyone else on here -- the minute I stop, symptoms start returning within a couple of days.
It seems malarone/mepron is not the answer.
I saw on here awhile back that someone said they got rid of Babesia with 4 rounds of quinine and clindamycin. My LLMD won't prescribe quinine -- says there are too many problems/side effects.
I don't know what in hell to do. Anyone have any insights/comments, etc.?
Has anyone been using primaquine with good results?
Posts: 81 | From NJ | Registered: Mar 2005
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liz28
Unregistered
posted
Dana--hang in there, but please don't stop doing your own research. This relapse issue seems to be a common one. The artemisinin should kick in after 1-2 weeks.
CLC--Again, the reason I got into this new babesia treatment is that other drugs had stopped working. I was on high doses of mepron, ketek, and artemisinin supplements for over a year, and relapsed every time I stopped taking these drugs. While conversations with other babesia patients and online research demonstrated that Riamet is a highly successful treatment, it is not prescribed to eradicate dormant liver forms of malaria (there's almost no research on babesia), which are the cause of relapses.
When I first started researching primaquine, it was a shock to find about 60,000 Google entries on the subject. It is routinely prescribed abroad for treatment of relapsing malaria, or as a prophylaxis in malaria regions of the world. How could no one even be discussing this?
The reason has to do with the politics of the malaria world, which are too much to go into here. Here's some websites to take a look at, for now. Remember, there is very little research on primaquine used for babesia.
The CDC recently raised the recommended prophylaxis dosage from 15mg base, or 1 tablet per day, to 30mg base, or 2 tablets per day. There are two reasons that have shown up on Google: one, relapsing malaria is developing resistance, especially in Asian countries, and two, people of a heavier weight may need a higher dose.
Since I weigh under 130 lbs., I'm taking 15mg base per day, and while it is too soon to know whether it has worked on babesia, it is definitely doing something.
While this is clearly one of the more toxic drugs out there, my personal choice was that it beats the alternatives: months and months of mepron, two very dangerous drugs called lariam (mefloquine) and quinine, or going abroad for Riamet and taking the risk of not purchasing enough, or having this same relapse problem occur.
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liz28
Unregistered
posted
Sorry, the Medscape link listed above may require a log-in. Here's the full article:
Adequate Primaquine for Vivax Malaria Posted 08/08/2005 Scott Kitchener; Peter Nasveld; Sonya Bennett; Joseph Torresi Abstract and Introduction Abstract
Background: Treatment of vivax malaria with primaquine prevents the relapse of infection from residual liver stages of the parasite. Inadequate dosage is related to a higher relapse risk. Methods: A comparison was made of vivax malaria relapse-prevention treatments with primaquine 22.5 mg or 30 mg daily for 14 days on 146 reports to the Australian Army Central Malaria Register. Results: The lower dose of primaquine was found to carry a relative risk of 6.63 for a relapse of vivax malaria compared with the higher dose. Conclusions: The available data presented here suggest that vivax malaria in this region is increasingly tolerant of the 22.5 mg daily treatment regimen of primaquine and that the greater dose of at least 30 mg daily is more effective. Introduction
Following an outbreak of primarily falciparum malaria among Australian Defence Force personnel during the InterFET, International Force, East Timor operation in East Timor, September 1999-February 2000, 267 vivax malaria cases and relapses were reported to the Central Malaria Register of the Army Malaria Institute by September the following year.
To prevent vivax and ovale malaria, primaquine postexposure prophylaxis may be used following travel to malarial areas. In the ADF, primaquine PEP is not directly observed by routine. Nevertheless, for almost 10 years, this has been found to be effective against malaria exposures in the regions to the near north of Australia. Prior to the ADF involvement in East Timor, the policy for the primaquine PEP dose for this region was raised from 15 mg daily to 22.5 mg daily for 14 days.
Initial investigations of primaquine during the 1950s were conducted using the Chesson strain from the southwest Pacific. Investigators found 30 mg/d for 14 days was effective, whereas 15 mg daily of primaquine was only 70 to 80% effective. Later the total dose of primaquine was suggested as the salient feature of treatment, and 6 mg/kg was ultimately recommended for effective treatment.
In recent studies of primaquine efficacy among Australians being treated for vivax malaria, resistance was suggested by a relapse rate of infections from Papua New Guinea in returning Australians that was eight times the relapse rate of infections contracted elsewhere. It was further noted that for these infections, 30 mg primaquine daily for 14 days, 420 mg total, was probably inadequate treatment to prevent relapses in this group of Australians. The total dose of 315 mg, 22.5 mg daily for 14 days, used by our study population for PEP would only be satisfactory to treat those individuals weighing < 52.5 kg. In a sample of 1,557 Australian soldiers completing deployments from operations in Bougainville and East Timor, the average weight was 79 kg; therefore, the existing dose would be inadequate for most.
The conventional treatment of vivax malaria in the ADF is 1,500 mg chloroquine orally over 3 days followed by 14 days of primaquine at 7.5 mg three times a day, 315 mg. However, during the study period 15 mg twice daily for 14 days, 420 mg, began to be used for treatment, providing the opportunity for a retrospective analysis of the effectiveness of the larger dose.
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Ahhhhhhhhhhh Bummmmmmmmmmmmmer
Any one out there have any sucess? Why aren't they doing more research on this. I just don't understand?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Wow - thanks for all the information. I'm gonna read all prescribing info, contraindications, etc., then order it. I already found an online source.
It's sad, but after 3 doctors (all supposedly Lyme-literate), and a year and a half of treatment, I realize I have to take matters into my own hands or I'll never get better.
I ordered that Lyme book a lot of people have been talking about on here recently and can't wait for it to arrive.
Posts: 81 | From NJ | Registered: Mar 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Am taking: artmeisin,Biaxin,palquinil,doxy,tindamax,mepron Anyone Have any LASTING good results with these combo's?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Dana, Thanks for starting this thread, although I must say it is one of the most depressing ones I've read in the six months I've been a member of Lymenet. (I know that wasn't your intention!) My daughter and I are both in our second month of Babs treatment with Mepron and Ketek. She's also on Plaquenil and I'm on Artemisinim. Is there any way of finding out if the topic of Babesia relapses was raised at either the recent ILADS or LDA conferences? Lesley
Posts: 164 | From USA | Registered: Jul 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Fever,chills,nightsweats,fatigue,headaches,brain swelling,sometimes heart involvment,animeia...just to name a few
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Chest pain, fatigue, and night sweats were my worst sxs. 1 Week of Mepron with a Macrolide put my babs sxs in check. Made a HUGE difference. It's been 3.5 years since, and knock on wood, still gone.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks Foggy.I just needed one sucess story .Just one to give me some hope.
I am starting Monday & I know it will be hard on my stomach & brutal with the herx.
I am having to go slow.Four days on and then 10 days off because of my stomach problems.It may take a while at this speed.Patience,I have to have.
I did 6 months IV & herxed really badly almost the whole time..So I am not afraid of a bad herx.
It's just mentally I need to prepare myself and I have to start out with some hope.
Sorry Lesley1954.I din't mean to start a bummer.Just looking for a little hope,
Thanks Liz28 for the information on primaquine.It may come in handy some day
Take good care & never give up and never give in
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Dana, No need to apologize. You asked an important guestion and hopefully others will respond with success stories. I have not found the meds to be too tough on my system. (I was very concerned before starting). I do think it has made me a bit depressed, which is probably what came through in my post. Sorry. Best of luck to you! Lesley
Posts: 164 | From USA | Registered: Jul 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Seven months of mepron w/ biaxin art and plquenil. 1 month so far w/ out relapse. Time will tell.
The art I pulsed 3 wks on 1 wk off. The mepron I missed only 2 separate days.
Never skipped the biaxin or plaq. Weened off of plaq last month of treatment and added bactrim.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks Heather. If I only got one really good month even I think it would all be worth it.
And if Foggy can have 3.5 years of remission then I have a chance too.
I hope you keep up the good progress. Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Six weeks on Mepron/Zith. Herxed on day 4, and on the 4 week mark (real big, thought I would like to stay in bed for the rest of my life).
On the 2nd day after treatment, I had a BIG JUMP in energy, and continued to improve over the next couple of months. It obviously kicked something hard!
I would consider myself in remission at this point, feeling better than I have in a year and a half. And I was able to go back to work, AND lose the weight! I couldn't even start a diet before, made me feel too sick.
I will continue to be careful about proper nutrition, sleep, and going easy on the stress. I am fortunate -- I have always had a pretty strong immune system. But I wanted to let you know that it is possible to get back to your life where you left off.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Shazdancer Thankyou so much for your post.
Good to hear someone else had a sucess with babs.
This inprtant to me.And gives me hope. Shazdancer & foggy you don't know how uch I appreciate hearing about your good turns.
I am ready to walk "thru the fire" now.With hope Blessings Take good care dana p.s. I am doing ALOT for immune support also.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
I don't know if I beat it, but I took Riamet in Christmas and feel my chills/ night sweats are all gone after 4 months of suffering.
That's the first time I treated it, I was not even sure I had babesiosis, but as my body got so much warm so suddenly, I think I finally had it. I don't know if symptoms will come back though. Hope not!! But will keep posting if yes.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Dana, good to hear you're encouraged.
I neglected to mention that I never tested + for Babs yet my response to treatment was proof positive. Having a LLMD who believes in chronic Babs and will treat based on sxs was imperative.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I'm glad to hear that people get positive responses from things like artemisinin and riamet, but I hate to see them come to the conclusion that they must have babs because of it. There are many other protozoal parasites and bacteria that use iron which would be effected by such drugs. Bartonella is one of them.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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Foggy
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Member # 1584
posted
quote:Originally posted by micul: I'm glad to hear that people get positive responses from things like artemisinin and riamet, but I hate to see them come to the conclusion that they must have babs because of it. There are many other protozoal parasites and bacteria that use iron which would be effected by such drugs. Bartonella is one of them.
Importantly, a LLMD would come to a diagnostic conclusion that a patient has Babs based on clinical sxs and/or serology, hence the Rx for Mepron etc.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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liz28
Unregistered
posted
Hardynaka--Thanks for your input. It's fantastic to hear you are well again, and that you didn't have this health issue for long. You are so lucky to have Riamet!
Just wanted to report that yesterday was Day Four of primaquine, the day people usually herx. Two hours after taking it, I suddenly developed a fever and became almost paralyzed for 3 1/2 hours. The only other antibiotics that have produced this kind of herx are IV rocephin, minocycline and flagyl. If I had been driving, there might not have been time to pull over. So if anybody else tries this, watch out!
Luckily, this is not a drug you have to take every day to get better. You can take 1 tablet (15 mg base) every day for 14 days, 3 tablets (45 mg base) weekly for 8 weeks, or 2 tablets (30 mg base) weekly for 30 weeks.
Also, my mother just reported that relapsing malaria and primaquine were the latest plotline on a medical TV show called "House" on Fox.
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5dana8
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Member # 7935
posted
Thanks for all your sucess stories.
I appreciate the information on primaquine. Good to squrril away for future note.
We can really beat this thing.!
I will not go quietly into the night"
Although I am sure alot of the "medical community ducks" would like us to go quietly! No Way! No how! I am going kicking & screaming.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Try Riamet - try PC-Noni (as I described it in a recent post a few days ago on the subject of Bartonella and Babesia). And of course Artemesinin in strong doses.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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5dana8
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Member # 7935
posted
thanks GiGi
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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liz28
Unregistered
posted
Dana, that's more like it! What's the Godfather quote? "Go to the mattresses!"
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hardynaka
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Member # 8099
posted
I said I didn't know if I had babs but probably had it. I had babs symptoms (heart pressure, anemia, night sweats, chills), but all tests came negative. Even for bartonella, ehrlichia.
Whatever Riamet killed, it 'killed' the chills and night sweats (and heart pressure).
Posts: 1086 | From Switzerland | Registered: Oct 2005
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