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» LymeNet Flash » Questions and Discussion » Medical Questions » BABS: how long were/are you on mepron/zith?

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Author Topic: BABS: how long were/are you on mepron/zith?
trails
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I am asking this question both for myself and someone else who is being treated with these two meds.

Any success stories and how long did you take these? was artemisin used before and/or after? How WELL did you get?

Please tell us your stories and relapses or anything that may be helpful.

Thanks a ton!
Trails


Posts: 1950 | From New Mexico | Registered: Sep 2001  |  IP: Logged | Report this post to a Moderator
Ms. Myoclonus
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Hello,
On mepron/zith for four months. I tested negative for babesia, but my LLMD thought my symptoms warrented treatment.

I am ten months into treatment with oral antibiotics and have made tremendous progress. (About 80% of my former self.) Too soon to tell about longterm prognosis.

Haven't tried artemisia.

Take care,
Ms. Myo


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trails
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Thank you very much! Good to know---different LLMDs are precribing for different periods.

Where are all my mepron/ zith buddies?

Did you all get well and leave me in the dust?

Trails


Posts: 1950 | From New Mexico | Registered: Sep 2001  |  IP: Logged | Report this post to a Moderator
mimi
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Trails, Hi I would like to know this answer as well. I have been wondering where everyone is too. I hope you get your answers soon.
Take care,
mimi

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liz28
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I've been on mepron/ketek/arte for ten months. After the first seven or eight months, the babs was just down to a small flare every month, for a couple of days. This month, I've switched to artemisinin and rifampin, and will try to go without the mepron unless there's an obvious relapse. Also, I desperately needed to get back on CoQ10, which interferes with mepron absorption.

It's hard to tell how I feel, because the rifampin is causing a long herx. But a lot of symptoms that used to be commonplace are now gone: sweats, dizzyness, lightheadedness, constant exhaustion.


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trails
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Good to know-thanks for your response!

I will be away from the board for travel and then surgery but please keep this thread going for my friend and others who would like to know how long people have been on mepron/zith and how well it has worked for them.

Be as well as you can everyone!
Trails


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oxygenbabe
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I have a couple threads where I asked similar questions.

AND I've been doing a lot of research but will post my final conclusions in a little while.

Because I'm drug sensitive.

I tested positive but am going to try and get a really good blood smear (from somebody experienced) see see what percent of circulating rbc's are infected, it should be 1-2% in chronic babs without overt sympotms such as drenching sweats, high fever etc.

I just want to be sure.

From my reading, too many people stay on mepron/zith too long. I know the bug is related to malaria and in some ways different but because its so little studied I've had to revert to the malaria literature and ask researchers.

Seems to me there is an extraerythrocytic form that is not targetted by mepron/zith. Even in early acute simple babesia, Peter Krause's studies of 7-10 days of mperon/zith show it still takes many months (6-12 I think?) to clear the organism, shorter than untreated controls (up to 21 months).

That says to me that...either doses of mepron/zith are not high enough or a different form is not being targetted (or a niche like the liver).

As I said I still have to research.

I found for instance an interesting article on riboflavin killing the gametocyte form of malaria. If babesia has such a form it might be 'cidal to babesia. Who knows.

I also found a really good article on malarone and artesunate (artemisinin would be a good equivalent) being highly effective even in resistant malaria.

I think the current treatments may be somewhat inadequate asthey take so long and people do relapse off them more often than is comfortable. Relapse either means: your levels were not high enough and some organisms simply developed resistance; or, you killed organisms in active forms but not an alternate form that was immune to your treatment.

I don't go to LLMD's anyway so I want to figure this out with my own doctor who is pretty open.

I am not saying mepron/zith is bad but I don't like reports like Trouts that after 7 or 8 mos on it, he goes off and in a few days symptoms are back.

That has to mean resistance. We know mepron alone leads to resistance.

More anon.


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CaliforniaLyme
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2 years- my daughter 9 months. She has been 100% for 3 years+ now-
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HEATHERKISS
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On 3rd Months and feeling good. I hope to only have one more month after this.

Fingers Crossed,
Heather


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HEATHERKISS
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I was on mepron, biaxin and art for 7 months!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am now having a relapse.

Boy oh boy am I miserable. So far the Doc has put me back on doxy, art and bactrim. I'm just waiting for Mepron.

Please God no!!! No the dreaded yellow goop. Yucky yucko

--------------------
HEATHER

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mtnwoman
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My LLMD uses Mepron and Zith in 3 wks on, one week off cycles. Had me do two, and then wanted to re-evaluate.

I didn't test positive for it. I didn't think I had the typical symptoms.

Mepron caused wicked hot flashes. I had to switch from Zith to Ketek cuz my kidneys hurt on Zith.

The Mepron/Ketek, may have reduced my chest pains, but otherwise, can't see much improvement from it.

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HEATHERKISS
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Oh yea.........

I forgot about the chest pains.
Yup that's back too.

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Michelle M
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Trails - that "another surgery" thing gave me a start -- till I saw the old post date!

Heatherkiss, oh man - I thought you were making good your escape, and here you are! Back so soon! I'm sorry about that. :-(

I am positive for Babesia WA-1. I treated it initially for two months with Mepron, Zith, and 600 mg. daily of Artemisinin.

HUGE improvement!!!

Unfortunately, two months later it all came back.

I just finished my second round of treatment, except this time I went for three months.

Here is MY theory, and I'm sticking to it: We may (and do) kill it in the body. Then we feel LOTS better! However, I am not convinced we kill it in the brain. How can it not come creeping back?

This particular departed gentleman had babesia microti, and a host of other ills -- and I mean really BAD ills -- colon cancer, leukemia, and minus his spleen. He was treated repeatedly for babesia. He died and was autopsied.

Despite repeated treatments, autopsy revealed that there were five times more babesial organisms observed in his brain than in any other location in his body. (Research article here.)

I suspect b. burgdorferi also has an affinity for cerebral real estate.

Michelle

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Hides1
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22 Months total on the Mepron/Zithro. Had a BAD relapse after I went off the first 5 months. Finally I am starting to test negative through the Igenex FSH test and my antibody test is down to 80- when it was at 1280. Babs has been so hard to get rid of- I am praying it is finally settling down. Back in Nov 06 Larium and Plaquenil were added. Maybe they helped along witht he Mepron /Zithro. I had been on Art too but went off recently.
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WildCondor
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Wow! Lots of Mepron! Cool!

The first time I did it was 2 teaspoons per day and IV zithromax for 4 months.

Relapsed and did 4 teaspoons per day with 1,200 mg oral zithromax and artemesia for 3 months...worked great..been fine for 3 years. [Smile]

Sometimes you need stronger doses and for longer duration. I think the 2 tsp per day is whimpy.

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cactus
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Uh oh - a relapse... sorry to hear it, Heather! From your posts you were about a few months ahead of me in the babs treatment world, way back when...

I did 12 months total babs treatment.

First 3 months: the (wimpy) 2 tsp Mepron per day, plus biaxin and doxy.

Next 3 months: 2 tsp Mepron plus ketek.

Took a 3 month break off babs treatment, on IV Rocephin, then came up positive for WA-1.

Next 3 months: Malarone, ketek, omnicef, artemisinin.

Last 3 months on babs treatment: Malarone, zith, omnicef & artemisinin.

Treating bart now & feeling pretty yucky - hard to tell if it's all a bart herx, or maybe some babsy stuff creeping back up, hope not. The only yellow goo I want to see again is fingerpaint!

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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treepatrol
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After 4 months biaxin xl and mepron I had drug induced fevers high!!ones low ones fevers stopped when I went off mepron immeadiatley next day.
Something to be aware of?

The only thing I did different was the between second and third round I did it straight through instead of a break like this 21 on then off 14 days off then 2 days on I did 21 days then kept right on untill I think it was 45 days altogether then 14 days off then at the end of that last round I had fevers for 30 days straight whew!!! nasty as soon as I went off mepron No fevers the next day,

Also I had a reaction to oxycotin which was caused by the acetametaphen in it RLS restless legs syndrome when stopping the oxycotin I weaned down to one a day then stopped and thats when that started its not the other drug in the oxy its the acetametaphen. How I know is years ago I had the same thing happen when I came off of alieve after a month.

And its terrible feeling between the mepron and oxycotin acetametaphen I was at my end No sleep for 30 days the best I had in sleep was 2 to 3 hours everynight.
So be careful and be aware!! [bonk]

I now use percocet without acetametaphen instaed it has asprin in it much better but watch the tummy!

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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tory2457
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for me 3 months: Mino, Zith and Mepron. and I feel really really good! Even stopped herxing this cycle.

been a lymie for 20yrs. MS was my misdiagnosis! Neuro lyme for sure, L'hermittes and other stuff still around but all in all feel so much better!

Obviously treating for Babs too!

This thread has me thinking I could relapse? and that I'm still not done with treatment? hmmm, I was feeling like King Kong (but a girl).

I really am stating this as a "funny", I haven't even started the real cyst busters yet!

I see my doc tomorrow, and I will be anxious to see "what's next"!

Great thread for people like me, who really don't have a clue what could be around the corner!

Thanks again for sharing.

tory

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trueblue
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I haven't taken any Mepron. [Razz]
But thought I'd post anyway. Sorry

I am 10 weeks on Malarone, 8 1/2 of Amoxy and 2 weeks on Artemisinin.

(I had taken 3 months of Artensinin, 2 of Malarone and low dose Ketek proir to having to dispose of my GB. The above is me starting over.)


Is there any chance Malarone has a lower relapse rate? I'm hoping the Proguanil, in it, along with the Atavaquone does something that Mepron alone may not. Keeping my fingers crossed, anyway.


I have another Babesia question, as long as I'm here...

I have had probably subclinical B. macroti for... um... forever. My only positive test was 9 years ago and a low positive.

Here's my question... At what point in Babs treatment did you start feeling improvement?

I realize I haven't gotten there yet as the non-herx or wtatever you call it keeps on giving and changing. [Roll Eyes]


Sorry for the diversion and even more sorry about the relapse Heather. I hope it's under control soon.

--------------------
more light, more love
more truth and more innovation

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valymemom
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One son is on month 7 of mepron/zith/omni and artemesisnin.

He did a month of malarone and went downhill so was put back on mepron.

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