posted
Thanks Geneal, yeah I did some more research myself (my computer is my lifesaver right now, as all this medicine Im on has basically confined me to my bed so all I do is research stuff all day lol), and 2 tsps twice a day is the max amount to take.
It is my 4th day on Mepron, and I did develop the air hunger feeling, which Ive not had in quite awhile, so I guess its hitting something. However, no night sweats. I have only had 3 days of mild night sweats about a year after being bitten. I thought the mepron might bring out the night sweats but it hasnt.
Also Im gonna do a 1-2 day break from abx to confirm that it IS the medicine making me so ill and not my own body. Do you guys think this is a really bad idea? I know its not the best thing to do, but could it really be that bad in my treatment process.
Posts: 370 | From NJ | Registered: Dec 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Question for Babesia patients:
Hi Friends,
I just recently saw a well-respected ILADS LLMD who actually was very agressive with my Lyme 6-years ago and it was a successful treatment;IVRocephin for 8 mos and orals for a year.
I've been treated for Bart for the last 5 months and, miraculously, I've been told by TWO LLMD's that, based on my 2nd Fry lab being cleared and lack of clinical symptoms that I can stop the Bart treatment.
They both feel it's "in remission" or "killed", whatever the correct verbiage is for these ambiguous TBD's.
Here's the quandary:
My Igenex Babesia FISH test came back as a very low positive for Babesia Duncani. My LLMD is referring to it as "being exposed" and because I have no Babs-specific symptoms, he thinks we should hold off on treating it after I've had such toxicity from the: Rifampin/Zithro/Cholestyramine combo for 5 mos for Bart.
I do not have any typical Babesia symptoms: lethargy, malaise, joint/foot pain, headaches, insomnia or nightsweats.
I'm normally a very pro-active, "face-the-music" kind of person so I'm feeling conflicted. I know if I insist on treating the Babs, he would give me the rx's.
My current plan is to wait a month or so, do some major cleansing/detoxing, probiotics, get back into exercising, build up the immune system and then make the decision to treat or not to treat.
I'd appreciate any thoughts/opinions and please do not be afraid to be honest. I respect your experiences and opinions.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I think taking a month off isn't a bad idea.
Maybe try the babs meds and see if you herx?
I would rather treat and be sure than miss something that would really hold me back.
Even despite the fact I am really, really tired of taking all of my meds.
Just my humble opinion of course.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Thanks, Geneal. It is kind of like being stuck between a rock and a hard place.
I think it's "mandatory" that I give my body a rest after the agressive Bart treatment, anyway, so a month to 6 weeks will be a good amount of time to do some cleaning up candida-wise and biotoxin-wise (and, of course, I have that wretched biotoxin gene so bring on the cholestyramine!)
Then, yes, it might be a good idea to try out meds specific for Babs and see what happens.
I'll cross that bridge by late May. I'm definitely not one of those kind of people who can "picture" something festering in my body like a ticking time bomb.
I'm more like the kind of person who'd become psychosomatic knowing it was in there!
posted
Well after four months of babs treatemnet the LLMD pulled me off and I am now treating Bart. I hope it does not come back Posts: 422 | From CT | Registered: Oct 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I've been treated for Babs for 5 years now, and have never gone into remission. I have seen 5 different llmd in my travels and tried every combo there is.
I recently was given the book on babesia and have been reading it.
I will post what I have learned and how it pertains to my experience with babs when I finish the book. It is amazing what I have learned.
Babs is hell. If you have a slightly positive test but are not symptomatic, don't sit around and wait for symptoms.
Treat it!
I haven't read the massive posts in this thread yet. I'm dying to get to it, but the ones I have read, I have a response for. There is so much to say. Where to begin.
Take care all of you and I'm sorry you are in this boat as well.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Bumping this up! Any new babesia buddies?
Posts: 3528 | From US | Registered: Apr 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Yes, I'm a babs buddy. I've been a babs buddy for a long time but didn't know it!
I am herxing a lot with a protocol that I've designed for myself based on the Babesia book. My LLMD knows what I'm doing and is providing the mepron/zithromax.
I've discovered with these die-off reactions that many of the symptoms I attributed to Lyme were actually babesiosis.
I was treated for babs in 2004 for 4 months and thought I was rid of it. Then this past summer I kept falling down suddenly. My legs were getting weaker and I kept spacing out, too.
I am taking artemesinin 400 mg daily and plan to keep ramping it up each time I plateau. I've already plateaued at 300 mg.
I've had terrible leg/foot pain, chest pain, headache, and weakness since I started artemesinin with the mepron/zith. I am forging ahead despite my discomfort because I'd like to be at a much better place by summer.
I'm responsible for the care of my two younger sons when they get out of school and I don't want to feel horrible and be bedridden during summer vacation.
Best wishes to everyone on their freedom-from-babesia journey!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Lymelady, I'm now officially a buddy too....I started a few days ago with a tincture called ABAB and will likely add Mepron and co very soon. How's it going?
Posts: 3528 | From US | Registered: Apr 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
CD, I am so, so sick today that I've decided to back off of the artemesinin. In fact, I feel so bad that at one point I considered going to the hospital. Then I remembered that they'd do nothing for me, so why bother?
I feel so ill that I wonder if I'm dying. Well, like so many of us on this board, that's how I'm feeling. I'm very tired now. I feel depressed.
Bye for now.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Can I join you? I am on day 9 of azithromycin and mepron - tested +Ve for Babs, Last night, I got a fever from nowhere of 102. It crept up as high as 104 last night but is now starting to come down. I don't know if I am herxing or if I have flu. I have muscle pain and twitching, stiinging sensation on my skin, very red face, fever, chills - but I also have terrible sinus pain, headache and congestion. So I am wondering if this is herx or if I have just gotten a flu/cold virus. I also read that herx with babs starts in 3rd wk so wouldnt this be way too early for a herx reaction? Posted in the support section and got a pm suggesting I contact my llmd. What do you guys think. Am I hoping for too much that this is herx. Do I just have flu?
Posts: 42 | From new york | Registered: Dec 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
The more the merrier! Yay! Sounds like it could be a herx....I know a lot of people say they herxed 3-4 days in and then again around day 10, and then 3 weeks in....so youre right on schedule!
As for me....I had a crying meltdown in Target, it was purely chemical, SO bizarre, then I was fine! I didn't know twitching was part of babesia. I have that too!
Posts: 3528 | From US | Registered: Apr 2007
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posted
Agree with you trish4. Mepron is actually sort of interesting tasting... Plus, who cares about the taste, if it is going to cure you.
Posts: 123 | From Los Angeles | Registered: Oct 2006
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