Topic: Babesia tx -- Quinine/Clindamycin success, then relapse
minoucat
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posted
Update Jan 2009: I've left my original post below intact, but here's the current situation: After 2 months of feeling very good after the Q/C tx, the hubby had quite a bad babs relapse. He's still in babs tx (doxy, mepron, cryptolepsis, artemesinin, biofilm) and is once again improving.
There are big gains in cognitive function but he's physically still very weak.
The Cryptolepsis seems to be a very important player.
I guess the lesson is -- when you think you've whipped babs, change treatments and continue to treat for several months. And be ready to jump on a relapse -- we let it go waaay to long because we just couldn't believe it happened.
I'm so grateful we have an LLMD who won't give up on us. I do think the Q/C is very effective, but the hubby has some latent form of babs that it didn't quite reach.
My babs, BTW, resolved after my first 9 month round of tx; I had a small relapse about 6 months later which I treated for 3 months; I've been babs-free for about 2 years. ********************************
I've posted in other places about the hubby's battle with babs, but here's the short and sweet version:
The hubby has gone through pretty much all known babs treatments before trying quninine/clindamycin.
He's very good about staying on protocol and tolerates medications well, so we're sure it was teh meds that failed, not other problems. He also does not seem to have significant issues with detoxing.
He did mepron/zith/art for over a year (this worked for me); choroquine/quinine for 6 months, one round of Riamet; Dr Zhang's protocol for over 7 months.
If we had it to do over he'd have done 3 rounds of Riamet rather than just one.
Each of these resulted in a month or two of being free of babs sx, followed by severe relapse. His babs sx are distinctive -- flu-like feeling, followed by sweats, over-the-eye intense headache, and intense feelings of anxiety.
He finished a 5.5 months of quinine and clindamycin 7 months ago. He has not had any babesia sx since that time.
This was an almost unbearable protocol because of the ringing in the ears, nausea, weakness, and depression. The first month he had intense sweats and had to change clothes several times a day and at night, and all his symptoms worsened severely.
The quinine made him feel lousy the whole time -- it's a really unpleasant drug. He took a break every 3 weeks to allow the ear ringing to subside.
I've also heard of this protocol being used on a 10 days on, 10 days off cycle over a year.
The research I've read (especially in bovine babs) indicates that in some cases babesia seems to have a latent form. It does not appear to reside in the liver, as malaria does, but in some other tissue, possibly the lining of the blood vessels. This may be why some people have such intractable treatment problems.
Getting rid of the babesia has made a huge difference in his mood, anxiety levels, cognitive function, and pain levels. The misery of the Q/C was definitely worth it for him, but I'm not sure that everyone could tolerate the side effects.
posted
Minou, I think I have some of the same symptoms that your husband had. Especially the flu like symptoms, and headache behind the eyes. I've also had ringing in the ears for almost the entire time I've been ill (3.5years) and feeling really hot, w/occasional sweats.
I didn't test positive for babesia, but after getting better w/borrelia and bartonella treatments, I started having other symptoms. I decided to rife w/babesia frequencies and I herxed, so I told my Dr. and he started me on Plaquenil and Zhang's artemesia. I've been on it about a month and I'm getting better. My hands and toes have almost no numbness left anymore, and the eye droop is better, but it's still comes and goes. Today it's worse than yesterday.
I'm really encouraged to read about your husband's apparent success in getting rid of the babesia. If my current regimen doesn't succeed, I'll definitely ask my Dr. about going on it.
I guess I have a couple of questions. I was wondering if your husband gets those headaches, do his eyes droop also?
Also, you said he took a break from the quinine/clindamycin every 3 weeks, but how long was the break he took?
Thanks for posting and thanks for your help.
Patti
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minoucat
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psano-- his eyes drooped and at one point he had bell's palsy, but I didn't notice the droop getting worse with headaches.
He did not test positive for babs via PCR, which was the only babs test he took.
His breaks were usually 3-5 days -- they lasted until the ringing in his ears subsided.
I forgot to say that the hubby also tried plaquenil, but not while taking artemesinin. This was before the babesia was diagnosed, and it was used to reduce the rheumatism and, I think, potentiate one of the other meds. It didn't help with the babs for the hubby.
Best of luck.
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Bugg
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posted
Thanks so much for posting about your husband's treatment plans and success...I am SO pleased to read that he is making REAL progress...Babs seems to be such a difficult one for so many to eradicate...
My heart, especially goes out to those on this board with both bart and babs, as I am constantly reading about folks being treated for one co-infection and then relapsing again with the other....
It sounds like your hubby is just battling babs so maybe he's finally going to "turn the corner" to wellness....I certainly wish both of you well and hope he continues to recover!!!
Thanks again for your terrific post...
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minoucat
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Hi Bugg. Thanks for your kind words.
But, I regret to say, the hubby is still fighting bartonella as well as LD. His virus load is way down, but viral relapses are still a factor. He also had erlichia and, we are pretty sure, mycoplasm
He still had the viruses, bartonella and LD while fighting babs. He is now treating the bartonella with IV Avelox, and it's really helping--nor is it a nasty med to take.
We're not sure what new thing to do next for Bb, but he's been continuing with Bb meds all along.
Altogether, despite the continuing infections, he is much improved and can even get outside and do some chores once in a while.
The improvement in his mental function and mood is wonderful for both of us!
I hope this encourages people who are very sick to keep fighting. When I took the hubby to our current LLMD he was too sick to set the table or read even a comic strip. He was in constant, terrible pain and in a frightening state of physical and mental disability. Life is so, so much better now!
I have a very resistant case of Babesia and am going to ask my LLMD about this combo. Muscle weakness is so bad when stopping meds I can hardly stand despite mepron,zith,plaq for many months.
Is the Avelox only for bart? If not is hubby currently treating lyme? and with which meds?
Thanks for any info.
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minoucat
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Avelox is for bart, but I think it has an effect on Bb. It is a fluoroquinolone, but does not seem to have the bad effects on tendons and ligaments that Cipro and Levaquin have.
Currently for Bb hubby is doing Rocephin; has done Tygacil and Doxy IV also.
Best of luck to you.
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posted
Glad to hear of your husband's success with the Q/Clinda, thanks for sharing this info.
Was the Tygacil helpful? I haven't seen too many people mention this drug but it sounds promising.
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minoucat
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We think it has been very helpful, especially with mental clarity, but it's too soon to tell about the long range effect. He's been sick a looooong time.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
Minoucat, Thanks so much for your reply and letting me know what worked for you and your husband. I have been on the mepron for 4 weeks and my legs so much that I had to stop for a few days. The dr. is giving me oxyconton so that I can get through the protocol for another 2 weeks. I printed out your post and I will show it to my doctor. I also appreciate what others commented. hugs.
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Health
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Hi Minoucat,
What dosage did your husband do with the Clindamycin and Quinine?
Maybe he might have to repeat this later?
Trish
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posted
Minou, I would also be interested to know what dosage of Clinda and Q your husband did? Great he has gotten relief!
And tutu, what exact dosage of both did you do? Always good to hear of people who had success with other meds rather than Mepron.
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Glad to hear your hubby thinks he has gotten rid of babs. Don't mean to discourage you, but hubby thought the same since last September -- had a negative Fry test after 4 months of quinine and clindamycin and then a few rounds of chloroquine and primaquine.
Started Alinia 2 weeks ago for G.I. parasites and babs symptoms have come back. New symptom of shortness of breath (air hunger) and of course nausea and tremors and sweats.
LLMD has added artemesinin to the Alinia and plans to treat hubby for at least 3 months with these meds for babs.
I think if I was in your hubby's shoes I would try Flagyl or Tindamax or Alinia for a week or two and see if any babs symptoms come back. Especially since he is also treating bartonella which hides out in the red blood cells as well.
Bea Seibert
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Did he have Lyme too? If the Lyme was really high, he might find the babs harder. I was treated for Lyme, but didn't make much headway till treating the babesia.-- this could work the other way, too.-- maybe you have to cut down the Lyme for awhile to make the babs more susceptible. Also, for me, monstrous amounts of garlic, with the artimisinin, helped considerably. (for babesia).. DaveS
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Tutu, thanks for that - yes it would be great if you do have the time to doublecheck your journals, would really appreciate that.
I have heard of others taking 2 Clinda 3 times a day and 2 Quinine 3 times a day,but much shorter duration I think, which still sounds impossible to me, given the side effects, so it's good to hear other success stories with more do-able doses.
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posted
clindamyacin and quinine so far has been the roughest abx for me the herx's are horrible..
but I do see major improvements since doing them.
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minoucat
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I've PMed those of you who want the dosages.
The hubby's case was desperate and the doses he did were higher than those Tutu did. Our doc seems to vary the dose in accordance to patient tolerance, and follows up with additional treatment if he can't continue the Q/C to his satisfaction. Q/C does not seem to be his first preference for treatment, presumably because it is so, so hard to tolerate.
Bea, so sorry to hear your hubby's still messing with babesia. My hubby did a lot of parasite tx with flagyl, diflucan, artemesinin, garlic, and alinia before doing the Q/C treatment -- I never thought about the parasite-as-reservoir angle (is that what you think is going on?), but I hope this pre-treatment it will help prevent a relapse for my guy. Good point, thanks so much for posting. As always.
Tutu -- nah, you didn't remember exact dosages when I asked you, either Isn't it wonderful to be able to forget some of this horrible stuff!
Dave, in the past the hubby did truly incredible amounts of flash-dried garlic and of artemisinin too (Zhang's protocol for over 6 months). They helped some, but ultimately did not defeat any of the tick-borne infections. The garlic did do wonders for the systemic candida, though.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
minoucat
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this book might help (haven't read it myself, but it has been recommended to me as a good babesia primer and overview by several people, including a ND)
The Diagnosis and Treatment of Babesia, by James Schaller
Research into bovine babesia indicates it is able to sequester itself in red blood cells, then change the outer proteins of the cell to make it attach to the lining of the blood vessel and, possibly, hide from the immune system.
Dunno if it does the same thing in humans. Don't know how long it can last in this form, since RBCs die off every 120 days.
No known tissue form of babs that I know of in any studies, but I don't know how hard it's been looked for. I don't think it's been definitively excluded.
Personally I think a huge problem is how the coinfections affect and enable each other -- your immune system might be able to manage or fend of "just" babesia once you had the load down and your immune system functioning; 2 or 3 coinfections together are too much to cope with.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Hoosiers51
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I found this post in the archives and thought it was really thought-provoking.
So I figured I would bump it to see what others think.
Aside from Quinine, I would be interested in Primaquine or also Riamet. (not together!)
Just been sweating everynight and looking for answers.......currently not on babesia treatment, because I want to make an educated decision before I restart this nonsensical torture of babs drugs........
If anyone has advice or wants to chat about it feel free to PM me too.
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seekhelp
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Clindamycin did more in 10 days for me than Zith/Omnicef/Ceftin/Biaxin in 3.5 mths. It is worth the suffering.
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Thanks for bumping up this thread! My child has babesiosis, so any info on potential tx is helpful.
Riamet/Coartem received a recommendation for approval by an FDA advisory board in Dec 08, but it doesn't look like it has been fully approved for US marketing yet. So it is not readily available in The States. I have read in a number of places that it is effective against babesia.
Everything I've read about Quinine/Clindamycin, particularly the IV, says it works but is really harsh with side affects. Papers on Mepron/Zith say it is effective with fewer side effects. This seems to be the consensus, first line treatment at the moment.
Sometimes other antiprotozoal/antibiotic combos are substituted depending on patient tolerance or response to the treatment. (We definitely could use some well organized clinical research on these therapies.)
Based on what I've seen in threads on this board, LLMDs do a lot of custom tailoring of therapy based on their clinical experience, the needs of the particular patient, and the cost/availability of drugs.
Thanks again for bumping that thread. Some how I missed it in my earlier searches.
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Hoosiers51
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So I wonder how much more effective IV quinine and clindamycin is than orals? I asked that question 4 or 5 days ago and didn't get too many replies......
I would like to do orals, but if the IVs are THAT much better.....who knows, maybe I would do it.
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CD57
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A thought: Why not go right to Clind/Quinine if Mepron/Zith is not effective?
It seems like the treatment is harsh regardless, has anyone here treated once for 4-5 months with Mepron/Zith and had babesia go away? It seems like people are on these combos for many months to years, and that it's harsh too.
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Hoosier51 - I've looked for info on whether the oral is "more effective" than the IV, haven't found the answer either. The most I've seen is that IV is "faster" and the treatment time can be "shorter" because it is going directly into the blood stream.
Consequently any side effects may also be more acute or dramatic.
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Health
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I have Babesia Duncani and it is formerly called Babesia WA-1.
Anyone else have this strain that feels the Mepron did not work that well?
I talke to someone at IGENEX and the Babesia Duncani is supposed to be difficult to treat, can take 1-2 years of treatment, it is not easy
to treat like the Babesia Microti, so possibly the ones that are having trouble with getting rid of Babesia,
you may have B. Duncani?
Who has Babesia Microti for years and having a tough time treating?
Thanks,
Trish
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CD57
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Trish, interesting thought. My LLMD once said that if you have duncani, it is MINIMUM 10 months of treating. I guess microti is easier. Are the symptoms for both the same?
And how do you really know which strain you have, since the tests cross-react?
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Health
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I was told I had Babesia Duncani, very positive, I had the FISH test and the other specific test positive for Duncani. I came back negative for Babesia Microti by another LLMD,
but still treated with Clindamycin and Quinine 3 years ago, so I have the advantage of comparing the 2 treatments and suggesting others to try both treatments.
Trish
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My child tested positive for b. duncani and negative for b. microti on Igenix antibody panel. Also tested positive for bartonella.
Current therapy is mepron/tetracycline/bactrim. (Kid is allergic to zithromax and biaxin.) Three months in and we've seen significant improvement. Guess we have a couple of months to go before retesting and evaluation of how to proceed.
I have read that Riamet/Coartem, an artemisinin based drug used for malaria, has been used successfully on babesia microti infections in Europe. This drug is under review at FDA with thumbs up from the advisory panel. So it may become available in the US. Patients may get another option. Posts: 170 | From New Jersey | Registered: Jun 2008
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Hoosiers51
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Health,
How did the Clindamycin/Quinine go? Did it work?
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Rianna
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I also have a very difficult time with babesia and am on clindamycin/Quinine at very high dosages, now month 3 and my mobility has improved although I am now getting drenching night sweats - I assume its part of treatment. I am sure this protocol is still working as many symptoms have gone and I still get air hunger a hour after taking meds some days.
Tried adding art to this protocol but have such a tough time with tollerance - 1 x 200mg 1 day is as much as I can take without losing my balance and then it takes me another 2 weeks to recover!!!!
posted
I tested very positive for Babs wa-1 (ducani) took bactrim /zith for almost a year, then malarone zith for a few weeks. Not sure if it's gone or not.
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sutherngrl
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momfromtexas, that is interesting stuff about malaria. I actually have 3 cyst in my liver and am now wondering if it is babesia hiding out. Do you know where you found that information? I would like to read more about malaria since there isn't much info on babesia.
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minoucat
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I can't find the very nifty presentation about babesia adhering to blood vessels that really explains things clearly, but here are a couple of citations. You can search under "babesia, cytoadhesion" for more.
CD57
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Interesting discussion about strains of babesia. My son tested positive for b. microti antibodies thru IGENEX, and my LLMD is son of the founder of this lab. He (my doc) said that often the strains cross-react. So I guess that means you could have microti but test positive for WA-1/duncani, and vice versa.
My doc did say that WA-1/duncani is harder to treat and will have to be gone after longer/harder. I guess over at Clongen someone said on here recently that WA-1/duncani has a different genome, whatever that means.
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Rianna
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On speaking with a friend in South Africa she states the only way forward in a relapsing/extreme case is to do exactly as Groovy (jay) did - The Primaquine/Chloraquine protocol as used in severe malaria patients and exactly as he did it in the high dosages and staying on primaquine for a long time and also adding in other babs meds with primaquine.
I'm just about to get my G6PD & P450 Genotype Tests done and then if all is OK I will be doing the Primaquin/Chloraquine treatment followed by Primaquine/Quinine Sulphate/Clindamycin.
I know its meant to be a rough protocol but I cant cope with this babesia anymore and from what I hear the key is to do this protocol exactly the same as with severe malaria and keep going a few months after you have seen improvement.
She also said that Primaquine is the only drug until recently that treats the dormant latent parasites in the liver and prevents relapses but again it must be used correctly, they also have a new drug out now called Tafenoquine that does the same as Primaquine so perhaps some here could try that?
seekhelp
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My LLMD e-mailed me today and said he refuses to use Clindamycin as it's way too toxic for anyone to be on for weeks or months. I am surprised how many on here get their LLMD to use if for 6+ months! Mine won't budge.
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CD57
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yeah it's a liability for the LLMDs to have us on this toxic stuff. But what if it works?
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posted
hello, i am just starting to treat babesia. using malarone and azithromax. has anyone tried adding in alinia ?
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posted
My LLMD wouldn't do clindamycin/quinine either. Mepron/Zith/Art didn't really do the job (I kept relapsing). I'm making some progress now with herbals, and I hope that will clear it up for good.
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Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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I have tried everything. Quinine has been the only thing so far that has put a dent in my symptoms.
Toxic or no, here I go for more rounds and jiminy... it is hard to bear....
minimonkey, I am on herbals too. Are you doing the Bunher babesia protocol?
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Tincup
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Lightfoot...
Do you also have Beaver Fever? (Giardiasis)
Sorry I know nothing about adding in the aline to that combo, but I personally would consider waiting till you've done the first protocol before adding in more things perhaps?
If you have a reaction you won't know what causes it and you'd need to stop all three meds.
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