posted
We are currently on month 4 of Mepron/Zith for my son's Babesia (also on Bactrim and Amox), not noticing a tremendous improvement in his night sweats. Wondering how long most of you have had to treat to be successful in getting rid of Babs. Can children take ART?
Worried the Mepron is what might be lowering his wbc as his last set of labs came back abnormal in that way.
One of my other children and I have been on the Mepron 3 months and have seen alot of improvement. Wondering why my one son is still drenched at night.
Any input appreciated.
Posts: 239 | From Virginia | Registered: Jun 2009
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sixgoofykids
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posted
I took Mepron, artemisia, and Biaxin OR Malarone, Lariam, artemesia for 20 months and it did not get rid of the babesia.
I finally cleared the babesia after I went to Germany for Lyme treatment. Once the Lyme was gone, it took another six or eight months before the babesia was by using the same alternative treatment as I used in Germany for the Lyme.
I did see improvement on the Mepron, but when I'd stop the Mepron, even to switch to Malarone, I'd get worse.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My kids have treated with both Art and Quina.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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BoxerMom
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posted
Is he B.microti or B.duncani (WA-1)? B.microti generally responds better to treatment. Duncani can be a real bear to treat.
There's a new paper out showing resistance to Mepron/Zith in B.microti. Has he tried Lariam? Other options?
I spent 1 year on Mepron/Malarone/Zith with regular rotations of Mino and Bactrim to treat my B.microti. My treatment was successful. I had pretty good energy for my first few months on antibiotics, but I certainly wasn't better in 4 months.
sparkle7
Frequent Contributor (5K+ posts)
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posted
Six - Did you use auto nosodes (your own blood) for the babesia with the Bionic 880? or did you use a babesia nosode?
Thank you for posting about this.
I learned alot from reading the doctor whose name we can't mention here's book on artemesia. There's alot of important info about treating with artemesia.
There are several chemical derivatives of artemesia. It's also important to make sure your iron levels are good & to use anti-oxidants.
Drinking tea & some supplements will interfere with iron absorption.
PS - I just started treating babs myself. I don't have typical babesia symptoms but my doctor thought I should try treating it. I have felt worse since I started. I'm just using herbs & supplements for now but I would consider drugs - so, I'm very interested in this, too.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Could you please private message me the name of the book and author on art? Thanks.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
BoxerMom, that's interesting about the paper on B microt resistance to Mepron/Zith. It makes sense to me. I have B microti and I was on that combo for over a year and made very little progress. However, when I switched to Malarone/Chloroquine, I got better very quickly. Still not over it, but I recently added back Tindamax and it's taken me to another level of improvement again. Now I'm on Malarone, chloroquine, Tindamax and roxithromycin.
Bactrim is supposed to be very effective against Babs, but I can't take it due to allergy. It's also inexpensive compared to some of the newer antibiotics.
Posts: 975 | From California | Registered: Apr 2007
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sparkle7
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posted
It seems there are alot of different strains of babesia. Probably more that they test for. I don't know if there's any real studies about which abx can cure it. If I have time, I'll look on PubMed later.
Taking a year or so of Mepron is quite expensive if it's around $1000 for a month's worth... It's very troubling how little is actually known before shelling out $12,000 for treatment.
Maybe I'm just not up on the details. I've seen about a 50-50 response here on how effective the abx are for treating babesia.
If I saw that the abx were pretty effective, I would take them. I''m just using herbs/supplements right now until I can research it further. I've also seen many people who post here relapse after thinking that they were better.
I don't think anyone is wrong for taking abx - I just haven't seen alot of evidence that they really work. The tests are inaccurate. I suspect that each strain may need a different treatment...
So, it's pretty much a gamble on how you approach it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Amanda
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posted
poor guy (and poor mom too).
I spent over 2 years on Mepron,zith and art, also tried malarone, plaquenil and some other stuff, I can't remember. IT helped me some initailly, but then it seemed to become less and less effective for me.
Am trying another drug now.
Agree with sparkle that it seems some people respond to certain drugs, but not to others. Not really sure why this is, could be different strains, could be something else.
Sometimes, people don't take high enough doses of Mepron/zith. IF he isn't making any progress at all after 5 months, then I would definitively talk to the doctor about another approach.
Groovy2 has battled with this for a long time, and has tried everything (and I mean everything). He has finally gotten good results. He knows alot too. you could Private Message him for his take on the disease.
IF you and into herbs, aside from artimisinin or artemesea, there is cryptolepsis, Noni, and something else I can't remember. I bet Sparkle would know.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
I've been told that the atavquone level in your blood may not be improved by taking a lot of Mepron. I asked my doc if I maybe we should up my dosage, since I'm a big guy. My doc has seen patients with high atavaquone levels who were large and relatively small individuals whose levels were low; both were on the same dose. I was on it for six or seven months. I don't know if I kicked it or not. I used to get terrible air hunger. You almost hate to say that you don't have something anymore because "poof" you just might again all of a sudden. I will say that I stopped treatment for Babs almost exactly one year ago. I think my diagnosis was microti. I'm back in the doghouse these past few months and I'm not sure what it is. I did sweat a little at night on 3 nights in the past month. Right now my main symptom is a really, really bothersome left arm; so bothersome that I haven't had a night of restorative sleep in a month and a half. All the muscles in my left upper back, arm and shoulder are twitching and jumping. My eyes also give me trouble on and off. They ache, or get really watery or even a bit blurry. Have a look at the first post or two I ever put up on Lymenet. I had a zillion symptoms back then. Air hunger was one of the worst. I haven't had that in a while. That is a toughie.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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Amanda
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posted
Oh, one more thing I forgot to add.
Babesea can lower WBC counts. sometimes, its hard to tell if the drugs is cause this, or the Babs itself.
When I was first sick, I was so bad I was in hospital for a few days. In less than 24 hours my WBC count dropped by half....
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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BoxerMom
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posted
Psano2 - Congrats to both you and your doc for trying new combos when what's long been considered the "tried and true" for Babesia didn't work. Glad to hear of your progress!
I agree, re: many, many subspecies of Babs. How many do we test for? How many respond to the current drug regimens? You just have to keep trying, whether its abx or herbs or Rife or all of the above.
Anthropisces - When my Babesia level came down, I bloomed with Bartonella, practically overnight. Major vascular rashes, foot/bone pain, eye issues. I've been treating Bart for over 1 year, with progress, but still a ways to go. Every few months, I do a month of Babesia herbs (Art, Enula) just to keep it under control. I also take Bactrim in my abx rotation.
I have to say, my Lyme doc encourages her patients to stay off the internet. She says only the really sick patients who never recover lurk around the boards, complaining and spreading doom.
She could not be more wrong! This entire group is well-informed, articulate, and incredibly hopeful and supportive! And completely committed to everyone's success. I'm pretty p***ed off that a LLND would ally herself with the mainstream medical view of us - that we're a bunch of whiny victims. We're some of the most self-empowered people I know. And we're our own doctors, too!
sparkle7
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posted
I agree BoxerMom - re: lurking on the internet...
I saw another "celebrity" LLMD say the same thing. It really put me off even though some people here consider him an excellent doctor.
After the money runs out & "one" may still be ill - what else can one do? I'm not that neurotic, obsessive, or out there - posting gloom & doom. I'm just trying to find a way to get well when all of the doctor's I've seen have failed me.
I've been ill for 15 years & I had a life, job, insurance & all of that. Where are they now? I really appreciate that Dr. Cowden gives away his herbal protocol to people in need & that Dr. K posts info about his protocol.
I don't really see most of the other major alternative LLMDs posting protocols for those who can't afford professional medical care.
The internet is a major step in our evolution. How dare they?
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sixgoofykids
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I think that LL practitioners just don't like to be talked about publicly. I KNOW there are some who don't. I don't think people are sick BECAUSE they spend time on message boards ..... I think people who are really sick are looking for more answers, so often the message boards have those who are the most ill.
Sparkle, I used the borrelia nosodes with babesia in them from Deseret. I still tested positive after that treatment. I treated monthly with blood + Bionic, and over time it cleared. I drank tonic water to help with symptoms while I waited for the Bionic to work.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you all for the great input - I really appreciate it. I for one think this is an excellent forum and very informative!
Think we will give the Mepron another two months till we go back to the LLMD again and then re-assess. It's frustrating enough when it is you who is struggling with wellness, it's doubly hard when it is your child. I just want him well and hate to have him on meds that have nasty side effects that might not actually be working! But alls we can do is wait and see I guess.
Amanda - interesting that your wbc dropped - my son's has dropped too - we are having his labs re-done. What did you do to bring them back to normal? Did you have to stop meds?
Thanks again, Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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posted
Just an added note, when I was on Mepron, I was on a pretty high dose. Normal is 1 tsp twice a day I believe, and I was taking 3 tsp (1 TBSP) twice a day. I was going through about 3 bottles/month at the high point.
Posts: 975 | From California | Registered: Apr 2007
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sixgoofykids
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posted
Me, too. I took 2 tsp. twice daily. That's double the normal dose.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sparkle7
Frequent Contributor (5K+ posts)
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posted
Thanks Six!
I know some of the doctors would like to stay out of the "Lyme light" on the internet... But I have seen them make disparaging remarks about Lyme patients who they say are nuts & spend all their time on line.
Sorry to digress from the topic...
Someone here said to me that she wouldn't use infrared light to treat babesia. I guess there are different opinions about it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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lymewreck36
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I'll keep it short. Been treated aggressively for 8 years. Going on my 9th now. Tried all malaria meds and antibiotics (doxy or bactrim...) in all combinations, as well as herbs, and can not make it go away.
Now I am sensitive to all babs medications, which cause a lupus like reaction.
Hanging by a thread.
I've seen the nation's leading llmd's.
Please do not ask me if I tried this or that. The answer is...yes, I have.
I've seen Dr. H in NY, I've seen Dr. K in CT, I've seen Dr. P in CT, I've seen Dr. J formerly in NC. I currently see a doctor in LA.
Some people kick babesia. I don't think I will. Yes, I think it will kill me. I have no quality of life. If I make my bed and prepare dinner for my family, I've had a hugely sucessful day.
Yes, I've done Bionic 880.
Yes, I've aggressively done detox.
ANYONE KNOW IF ANY NEW MALARIA MEDS ARE COMING DOWN THE PIKE!
Finally, the best med combination for treatment of babs is mepron/zith/bactrim/art.
My babs became resistant to mepron when I quit zith and went to biaxin instead.
So....the answer is....8+ years of treatment for me.
Wishing you all wellness. Been over a month since I posted online.
Hope all of you had a joyful Easter. Spring has come to Switzerland, and I love the daffodiles and forsythia beaming gold.
Mary
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sparkle7
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posted
lymewreck38 - I love the daffodils & forsythia, too! We don't see that alot where I'm located. The spring is less of a contrast than in northern places. Lots of azalea & dogwood, though!
Anyway-
I have some suspicions about mepron. I looked it up on PubMed today & found there are at least 2 studies with dogs & babesia gibsoni where mepron is not effective in a significant number of cases for treating babesia. These aren't human studies with the strains that humans have but somewhat significant, never the less...
-
Possible emergence of drug-resistant variants of Babesia gibsoni in clinical cases treated with atovaquone and azithromycin.
Mepron is somewhat effective but not always. Out of all of the drugs tested, Mepron seemed to work the best but it was gauged in regards to "growth inhibitory effect" in vitro not necessarily "cure" for human strains in vivo (see below).
The study with the dogs showed that 5 of 8 dogs relapsed...
-
In vitro evaluation of the growth inhibitory activities of 15 drugs against Babesia gibsoni (Aomori strain).
Do you think someone with Bb (or other parasitic, bacterial, viral, fungal, heavy metal toxic illness, etc.) is considered "immunocompromised"?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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posted
Lymewreck, I know you said not to ask, but have you tried Tindamax in combo w/some of the other antibiotics/antimalarials?
Would you mind pm'ing me the name of the Dr you're seeing in LA? I'm looking for an LLMD closer to me than northern California.
Posts: 975 | From California | Registered: Apr 2007
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quote:Originally posted by lymewreck36: I'll keep it short. Been treated aggressively for 8 years. Going on my 9th now. Tried all malaria meds and antibiotics (doxy or bactrim...) in all combinations, as well as herbs, and can not make it go away.
Now I am sensitive to all babs medications, which cause a lupus like reaction.
Hanging by a thread.
I've seen the nation's leading llmd's.
Please do not ask me if I tried this or that. The answer is...yes, I have.
I've seen Dr. H in NY, I've seen Dr. K in CT, I've seen Dr. P in CT, I've seen Dr. J formerly in NC. I currently see a doctor in LA.
Some people kick babesia. I don't think I will. Yes, I think it will kill me. I have no quality of life. If I make my bed and prepare dinner for my family, I've had a hugely sucessful day.
Yes, I've done Bionic 880.
Yes, I've aggressively done detox.
ANYONE KNOW IF ANY NEW MALARIA MEDS ARE COMING DOWN THE PIKE!
Finally, the best med combination for treatment of babs is mepron/zith/bactrim/art.
My babs became resistant to mepron when I quit zith and went to biaxin instead.
So....the answer is....8+ years of treatment for me.
Wishing you all wellness. Been over a month since I posted online.
Hope all of you had a joyful Easter. Spring has come to Switzerland, and I love the daffodiles and forsythia beaming gold.
Mary
Lymewreck I was in the same boat as you, then was introduced to rife. It saved my life. Lookinto the GB 4000 or the doug coil.
Posts: 181 | From chicago | Registered: Jun 2002
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blinkie
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posted
lymewreck- Can I ask what symptoms you are still struggling with?
Also, did you get relief from those symptoms while taking any babs abx like bactrim?
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