posted
I have been on Mepron and Zith for about 4 1/2 months for babs. Doc wants me to take at least another 4 weeks of Mepron combo. My question is: I stopped the really bad Mepron herxing about a month ago and have been feeling pretty good until this week. I feel like some of my lyme symtpoms are coming back (sore, stiff, achey). Did anyone notice the lyme make a reappearance during break from lyme treatment while treating babs? I will go back to lyme treatment when I am done with babs....just wondering if anyone else noticed this. Thanks!
jen
Posts: 393 | From Washington, DC | Registered: Jun 2005
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liz28
Unregistered
posted
Nobody really knows much about babs treatment at this point. If you've been reading through past Lymenet posts, you've probably noticed a pattern. People start on mepron, they confidently say they are symptom free after a few months, they stop taking mepron, and then they relapse, usually after exercising.
The common wisdom so far, which could be 100% wrong, is that babesia and Lyme have a symbiotic relationship. This is not as outlandish as it first sounds, since babesia has many similarities to malaria, and malaria is adept at creating symbiotic relationships with other organisms.
So supposedly (and again, this has not been proven at all) the two protect each other from antibiotics, and when you shake one up, you affect the other as well. What I always heard is that Lyme can hide inside babesia (again, careful, this is unproven) and is dumped into your system whenever you kill the babesia.
For now, you may want to throw some artemisinin supplements into your regimen. It won't cure you, but it will keep your babesia symptoms more under control. When it comes to babesia treatment, I'm firmly in the camp that it has a dormant form similar to the one found in malaria, which is impervious to all drugs except primaquine, a "cyst buster" given simultaneously with other malaria drugs to cure plasmodium vivax and ovale. It's not the most fun drug to take, but it is the only one of its kind.
There's a lot of other camps regarding babesia treatment as well. It's a good idea, when deciding what you want to do, to read up on malaria treatments first, since that's the area of medicine where all our babesia treatments come from. The drugs are mepron, malarone, quinine, doxycycline, Fansidar, primaquine, doxycycline, and an icky one called lariam/mefluquine. If you haven't heard of these drugs, it's important to research them. It will take five minutes on Google. You can just go to the CDC travel medicine website and read their malaria page.
Unfortunately, I've found that even with long remission periods, I do have Lyme relapses when under extreme stress. It has had to be very extreme, but it still happens. So it's always good to be cautious about saying you'll be done with any one treatment, and that you will only do one at a time.
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posted
I understand that I will not (and may never be) done with babs or lyme. My question was more related to whether anyone noticed a lyme sx flare during babs tx? Thanks.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Jen, the zith would treat the babs and the lyme. My guess is your experiencing some herxing from the zith itself, possibly getting after some of the Bb.
It's common for symptoms to wax and wane, old one's dissipate and new one's appear. Absolutely throw artemisinin into the mix. It's effective against babs.
Your doc seems to be right on. My son did a couple of months of babs treatment and was feeling pretty well. Our doc ordered another month as well just to make sure. He's never had any signs of relapse since.
Many people have been helped by zith and it does cause some major herxing in some. Our doc's advice on whether an abx was working or not ? If you feel like garbage, it's working. Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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suki444
Unregistered
posted
I think it is difficult to conclude what is going on, maybe a LLMD would know as there are different possibilities.
Sometimes Bartonella can re-emerge when treating Babesia...one can appear when treating the other. Maybe you do not have Bartonella tho.
My LLMD says it can take until the 5th month to 'get' the babesia so maybe you are herxing still. Just some ideas!
posted
Liz, thanks for the information and opinion. That was interesting to read.
So one potential issue is the symbiotic relationship with Lyme. Another seems to be that mepron only suppresses the babs, and doesn't really attack it. Am I right in thinking that?
I am wondering because I see my LLMD on Tuesday, have tested negative for the coinfections twice, but everyone on this board seems to advise (disclaimers withstanding) that the tests for coinfections are not reliable, and to therefore geet treated for them.
Being in a non-Lyme area, with only two docs who know anything about this disease, I do all the research I can. My doc appreciates it and listens when I bring him facts, opinions from other patients, and research papers.
I had a consult with an LLMD back east, who said at that point (only 4 months into tx) that the main reason people don't improve is because coinfenctions are not treated.
So now it's another six months down the road, and I am still disabled-ill. but maybe that's just becuase thise treatment takes a long time ... another 2-3 years...
when you say do one thing at a time, I wonder, should I be advocating to my doc to treat the babs, or keep with the abx for the lyme and see what happens.
I have read too many stories on here of people wasting years on abx because they did not address the coinfections issue. That's my dilemma.
At the same time, I don't want to make myself so sick with the treatment that it is intolerable.
So .. anyone .. put in all your disclaimers but I would appreciate your opinions and experience. In the end, it will depend upon what my local doc says, and if I don't agree, I will go for a consult to someone who has seen hundreds of us and get his or her opinion.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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liz28
Unregistered
posted
Hi, I thought I'd said it coherently. Here's another go.
Basically, if you still have Lyme and go off Lyme antibiotics, the disease will probably come back. Especially since babesia drugs hit the liver very hard, which is helping to process all these antibiotics and toxins.
In addition, there is a theory that Lyme spirochetes hide inside babesia, so when you kill the babesia, the Lyme inside them would get dumped into your system.
When you herx, you are creating stress, which further suppresses an immune system that is overwhelmed already. This can make it harder for your body to hold back Lyme that is waiting to come back out. Taking more than one antibiotic treatment also kills off more friendly bacteria in your body, which makes up a large chunk of the immune system.
Also, I didn't mean to imply you'd never be cured, because that's silly. New antibiotics and treatment protocols come up all the time. The malaria medical community is getting a large influx of research funding, which should get more drugs into the pipeline. The threat of drug resistant bacteria has made the development of new antibiotics a promising one for pharmaceutical companies.
All I'm saying is, don't quit your day job--that is, don't stop your Lyme treatment until you are done with babesia treatment, because there's no current reliable timeline on that.
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