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» LymeNet Flash » Questions and Discussion » Medical Questions » Babs treatment --feeling much better!

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Author Topic: Babs treatment --feeling much better!
minimonkey
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Wow, folks...

I'm on my 5th month treating for Bb (I've had it AT LEAST since 1988) and was still getting horrible headaches daily, sweating, stiff neck, etc. So I asked my LLNP if we could treat for babs based on symptoms alone (since I had a negative test)

I'm on bicillin and ketek for the lyme, so first I added in the artemisinin, and a few days ago the mepron. (taking ketek instead of zith).

OMG! I have woken up with NO headache for 5 days in a row now, no night sweats, and my stiff neck is getting better, too! I started feeling better even before adding in the mepron (just taking artemisinin with the ketek), and feeling even better than that, now. SO -- I guess babs really was the problem.

Y'all had me convinced that mepron was going to be unbearably disgusting.... truly, it isn't THAT bad... nowhere near as bad as I expected. I've had no negative effects from taking it so far, either. Now, I just hope the insurance keeps paying for it!!!

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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iceskater
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Congratulations on feeling better. What an accomplishment. It is amazing when you start to work on the entity that is the culprit what medication can do. I applaud your happiness, your improved health and determination to get better. Keep strong! Keep up the good work!!!
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tabbytamer
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Mini,

Thanks for this post. I really needed to hear some positive stuff regarding Mepron.

So glad you're doing better. [woohoo]

I've had my Lyme as long as you (1988).

Please keep us posted on your progress.

--------------------
Tabby

 -

California Lyme support group

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david1097
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How long on mepron before you saw a difference?

On relapse and restart It took about 5 days for me to see a big change, although 3 days maked the start of something visible.

Just interested.

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gardenoflyme
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glad to hear you are doing better by treating your babs.

I had the opposite problem. Had more hot flushes on mepron. Never really had sweats. Perhaps it wasn't babs afterall. It's a shame its so hard to know what disease you really have.

On the other hand,since getting treatment for bart I've noticed mucho improvement.

those on this board who say to treat for co-infections are right on.

Lucky your LLNP went with your gut feeling.

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sunnygirl
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This is so encouraging for me Mini. I also have awful night sweats. If I open my eyes at all during the night the sweats start. They also wake me up. Very uncomfortable. My upper shoulders and neck are also very painful.

I'm just waiting for my LLMD to phone in the mepron and azithromax. Luckily my insurance said it was covered.

Keep us updated.

Sunny

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trails
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VEry encouraging and CONGRATS TO YOU!!! awesome.
 -

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Foggy
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I had the same dramatic improvement within days. Had to switch LLMDs but it was worth it.
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minimonkey
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David --

I saw an immediate improvement, actually -- starting with taking the artemisinin, I felt better the next day --- and on my 3rd day of mepron, the stiff neck that I have had for literally years started to get better.

I was so used to waking up with a migraine, and now my head feels just great in the mornings! I've been able to decrease my pain meds dramatically -- yay!

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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sunnygirl
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I Pray I have the same response! My neck is so sore and stiff and sore head.

Question: Did you have to get blood tests more then once a month on the mepron and zith for liver function?

I start both the mepron and zith this evening. My prescription is ready.

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jwenny
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I wish I had the same response. I've been herxing nonstop for the past 2.5 months. I think I have a very severe case of babs. Yep, the mepron herx from hell.
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minimonkey
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The herx started hitting me today... [Frown] Mostly babs type symptoms, too (nausea, sweating, palps, morning migraine, etc.) A bit of old, familiar neuro stuff in my hands, too. So, perhaps my sailing won't be quite as smooth as I originally hoped.

I get my liver panel done once a month... so far, so good, though the last one was a little elevated so LLNP recommended liver support. She said milk thistle, though I've heard that can interfere with the Mepron... sigh.

I'm thinking Ketek is the likely culprit for both the herx and the liver enzymes. I herxed my head off when I first went on it! I'm going to do liver support and try to tough it out, as Ketek is a strong and wonderful drug for those who can tolerate it.

In any case, fu

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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minimonkey
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Hmm -- not sure how to edit my post... seems I had an unfinished thought there at the end. Don't even remember what I was going to say, but "fu" was definitely not a part of it....

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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DolphinLady
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Minimonkey,

Congratulations!

Sent you a PM.
-DL

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5dana8
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Minimonkey

I am so happy to hear you are feeling better [woohoo]

--------------------
5dana8

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trails
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mini---milk thistle lowers the blood levels of Mepron. This is a well researched thing coz lots of AIDS sufferers have tried to take milk thistle to help their livers while on Mepron for PCP infections.

Google milk thistle mepron to find papers and such.

I have found no way to support the liver while on Mepron without compromising the therapuetic effects of Mepron. If you find something PLEEEEEEZ let me know!

Mepron elevates my liver enzymes every time now, within a week. [Frown]

I am sorry about the herx!
Try to remember how well you were feeling, you will get there again, you just have to feel badly for a bit now--but you will be feeling better soon!
Trails

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Lymetoo
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quote:
Originally posted by minimonkey:
Don't even remember what I was going to say, but "fu" was definitely not a part of it....

Hey, I didn't do a thing, and already you're here cussing me out!!!!! [Eek!] [tsk]

The edit thingy is the one with the pencil and pad. Just click on it. Then I'll be the one who looks stupid!! [Big Grin]

I'm so glad you insisted on being treated for babs....and I'm glad you're getting results! Now to survive the HERX!!

My very worst herxing was on the babs meds. OUCH! I was laid flat for 2 months.

Keep on keeping on!

 -

--------------------
--Lymetutu--
Opinions, not medical advice!

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Getting Better
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Just some information --

I started mepron 8 weeks ago, 2 tsp tid

After a week, and for three weeks, I felt better than I had in a long long time

Then I got worse. Like today, every day, sick, nauseous, shaking in the morning ... until noon.

Doc today figured I need to be taking 2.5 tsp tid -- I weigh 210 lbs -- and let's see if that helps. Maybe I haven't been taking a high enough dose. Or maybe this is like everything else with these TBDs .. better, worse, better, worse, better, worse.

I am so sick of being sick.

--------------------
Jeff

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minimonkey
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Just an update -- my herx only lasted about 2 days, and was pretty minor in the grand scheme of things. Now I'm back to feeling quite good again.

N-Acetyl cysteine is a liver protector -- does it interfere with Mepron, too?

I am taking the milk thistle at my LLNP's orders -- but I take it as far away from the mepron as I can manage -- probably still interferes with the levels of mepron, but I only have ONE liver!

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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liz28
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You could try taking schizandra herb for liver support and see what happens. I've been taking it for two years as part of an excellent herbal mixture called Dr. Zhang's Hepa Formula 2 (from www.hepapro.com), which I haven't had the courage to stop taking yet despite its daunting, though justified, price tag. But now that my babesia seems to be routed, it may finally be time to check out the plain old herb for $10 a month.

http://www.vitacost.com/NaturesWaySchizandraFruit

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Lymetoo
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quote:
Originally posted by minimonkey:
[ Just an update -- my herx only lasted about 2 days, and was pretty minor in the grand scheme of things. Now I'm back to feeling quite good again.

[/QB]

That's awesome. I wish more drs would treat without a positive test for babs. I think there would be fewer people hanging around this board!!

But then I would get lonely, huh??! [Razz]

--------------------
--Lymetutu--
Opinions, not medical advice!

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minimonkey
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I quite agree, Tutu. I asked for babs treatment, because all my symptoms were improving except the babs-specific ones, which were getting worse and worse. My NP was more than agreeable to doing the Tx. I think this has made all the difference in the world. My NP is wonderful in that she lets me be a co-decision-maker in my treatment.

Now, if only my liver can handle it....

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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Michelle M
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YAY, Mini!!! True to your signature! My own experience with Babesia WA1 is like that too -- like night and day, I'm feeling so much better. My head's so light and pain-free it might float away. :-)

Coworkers are dazzled by the recent return of my brain.

The beginning was fairly hellish. However, it does pass. And is SO worth it. After the rough time, there's been no persisting noticeable effect for me, so I will take it till whenever cheerfully.

Go, girl!

Michelle

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JimBoB
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Your LIVER is NOT the ONLY THING you NEED to be concerned about. To be sure.

What about the REST of your Lymph system. The liver is just a part of THAT.

You might try Red Root Tincture, it is the best for keeping your WHOLE lymph system working properly and that includes the liver. I would NOT be without it when treating Babesiosis.

As a matter of fact, I take it three times a day even when I am not using the Artemisia annua for the Babs treatment. (two weeks).

You might try using it at least two hours after or before using your Mepron.

You can always get more Mepron. You can't always get more liver. At least not THE one you need to live.

Also, Red Root is only made in America. So it may be hard for you to get it. It is an American root, not Chinese or other countries. BUt it is out there. I get it in bulk and make my own tincture. Then you KNOW what you have.

I get mine from StarWest Botanicals.

Jim [Cool]

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char
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Does anyone know the lowest dose of Malarone one can take and still make gains?

Also, is there something besides Ketek you have used in combo? just the Art?

Does Art by itself doing anything?

Char

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minimonkey
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Thanks, Jimbob ---

I have been taking Red Root since the beginning of treatment -- though I take the capsules, not the tincture.

The only combo I've tried is the Ketek/mepron/art combo --- I know Ketek is risky, but for me it is worth taking an informed risk, since it is helping me so much. I know that other macrolides (zith, I think biaxin, etc.) are effective, also.

I don't know the answer about art. alone -- according to Buhner's book, art. is quite effective against babs. I suspect it would be more effective than nothing, in any case! From what I understand, babs is a very tough buggie to kill, and likes to relapse. That is why I've opted to go the incredibly aggressive route.

--------------------
"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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