Fiance had a good run on Minocycline, Rifampin, and Tindamax. He stopped the Rifampin; the Buhner herbs he's on (esp. Cat's Claw) seem to have taken over its job pretty well. LLMD thinks he plateaued on Mino, so that's been stopped.
He's been on Tindamax as his sole drug (not counting herbs, etc.) for about a week, and is still doing well, but "crushing fatigue" and aching muscles are returning.
He's about to start Malarone with Zith, in case babs is in the picture. There are some hints it may be, though no positive test results.
LLMD suggesting starting Malarone first, then adding Zith. I wonder if Zith should be started first, since I think it hits more organisms, and I worry that on Tindamax only, perhaps the ketes have been coming back?
So...all opinions on the sequence of Malarone and Zith are most welcome.
Also, can Tindamax make you more tired over time? He's been on it for about 2 months. This fatigue has seemed to get worse since he's been off the Mino.
Many thanks, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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ByronSBell 2007
Unregistered
posted
250 mg of Zithromax knocked me on the floor for 2.5 days and landed me in the er temporarilly, but I am a weird lyme disease kid that no one can really understand my condition!
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lymewreck36
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posted
Be careful with that crushing fatigue on the tini. It could be herxing, but it could also be part of a really bad drug adverse reaction.
Research drug adverse side effects and be aware of them. It's a tough call, but you should know about them anyway.
Mary
Posts: 1015 | From North Carolina | Registered: Aug 2003
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posted
Byron, Wow, sorry for your Zith reaction! We always ramp up slowly, and he tends to tolerate the abx well, but thanks for the warning.
Lymewreck, I just checked the list of adverse reactions, and didn't see fatigue on there. Is there some other info about Tindamax you can direct me to?
Tutu, I think the plan was to do the Malarone for a couple of weeks before adding the Zith, but I'm not sure, and I can't ask, because fiance is asleep. Yes, we definitely want to avoid double whammy, since single whammy can be more than enough to deal with!
But something doesn't feel right about this massive tiredness. Yesterday, we played basketball in the driveway for an hour and he was fine. Today, he went to bed at 7:00.
I just HATE this feeling of always being off balance, never being sure what's working and what's not, always second guessing... I know y'all know what I mean!
Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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Geneal
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posted
I started my malarone first....one pill for two days, then two, then three then four a day for a
couple of days before I added the zith.
I am not sure how much malarone your husband is to be taking..
My LLMD said an allergic reaction with malarone was unlikely, but since I had such a bad
experience with mino, I started malarone by itself before adding in the zith.
BTW I just finished my 3rd month of malarone(4 x a day) with zithromax 600mg a day.
Additionally was taking bactrim 1600mg a day, diflucan 100mg 2x a week and flagyl 250mg at one time a week.
Make sure to take the malarone with food (fatty preferred).
I took the zithromax on an empty stomach. If I took it after I ate, it gave me really bad stomach cramps for about one hour.
I herxed pretty bad on the zithromax.
Good luck.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymewreck36
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posted
Wow Geneal. I wish I could tolerate that aggressive a treatment. IN the beginning, I could and I pounded the bugs as hard as I could. But after several years, it became more and more difficult to do it, and I became more and more sensitive to medications.
I will look up that link on tini side effects. I know about it because I had horrific side effect after very long term, high dose flagyl last year, and did the research on both tini and flagyl. I'll get back with that as I have to look it up again.
Mary
Posts: 1015 | From North Carolina | Registered: Aug 2003
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posted
Lymewreck, thanks in advance for looking up the tini side effects. It's just so hard to tell what should be attributed to herx, adverse effects, and/or being "between meds" and having some symptoms creep back.
Geneal, yes, you are truly a trooper with that regimen? I'm assuming that the Malarone and Zith combo was for babs. What was the Bactrim for? To keep getting the ketes?
Thanks!! Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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Geneal
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posted
Dear Viva,
I believe the bactrim is also to target the babs....
I know that when the bactrim was added (second month) I stopped night sweats within two days
of taking it. Had night sweats every night the first month of malarone.
The flagyl is supposed to keep me from getting c.diff I believe.
The diflucan....incredible yeast with this regimen....need I say more?
The hardest part was spacing everything out and always remembering to take my meds....
I started taking my probiotics in the middle of the night when I got up to go to the bathroom...
Only time I could fit it in.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Like everyone says, "I'm not a doctor" and this is just my impression from reading a bunch of things in different places, but it seems as though the sense I get is that the Malarone is more definitely associated with killing the babs, whereas the abx are less so. (the babs being caused by a parasite rather than a bacteria, being similar to malaria which is what malarone is for, etc.) Which leads me to believe start with the malarone. for what it's worth. good luck. i just started malarone a few days ago along with biaxin. C
Posts: 56 | From southeastern PA | Registered: Jul 2006
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sometimesdilly
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posted
i'm probably missing some huge detail in this conversation. sorry if so.
just to toss in about Malarone. In my llmd's (anectdotal)experience Malarone is not just about babs. it can also work really well in synergy with mino to go after Bb cysts.
the best progress i've had to date was with that combo- cleared my brain for 2 weeks, for which I remain grateful.
dilly
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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posted
Just got the Malarone prescription today. Instructions are one pill a day, then will add 250-500 mg of Zithromax per day after a week or two of Malarone alone.
Geneal, that's a much lower dose than you're on, isn't it? Thanks for the hugs, by the way. I need them. Sending some back atcha. I find starting a new course of meds very stressful. So many what-ifs...
C, since fiance popped a Malarone tonight before I had time to say, "So when are you going to start?", the die has been cast. Malarone first it is.
Dilly, I had wondered about adding Zith and Malarone to the Mino that fiance had been on before. LLMD thinks fiance may have plateaued on Mino, and is also concerned about sun sensitivity this time of year. That's why he stopped. But it helped him tremendously, especially with clearing brain fog. He's on Tindamax, which is hopefully getting at those cysts.
Any and all other comments welcome...
Thanks, as always, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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Geneal
Frequent Contributor (5K+ posts)
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posted
Dear Viva,
I know that with the malarone, I had initially an increase in dizzyness, chills, air-hunger and running some fevers off and on.
I have seen people on this board making progress with a much lower dosage of malarone, so....
who knows? I know my LLMD believes that one month of malarone 4 x a day should erradicate babs, but as I just finished my third month....
I think some strains must be harder to target and erradicate......Lucky me.
I know that doxy can lower the effectiveness of malarone.....You may want to check on the mino---same class of meds.
Also, do not take milk thistle while on malarone.
Thanks for the hugs....I can always use some.
Hugs back to you!
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Thank you for that warning about milk thistle. Fiance has been taking it, but is going to stop. I'm going to start another thread for ideas about liver support while on Malarone...
Fiance is feeling a little perkier today, but he also re-started B-12 injections this morning (breaking the "do one thing at a time rule," I know). But hey, I'm just glad he's having a good day, whatever the source.
Hang in there!
your vicarious Malarone buddy, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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trueblue
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Member # 7348
posted
Hi Viva, Just to pipe in here. I also started Malarone first. I was told to start ABX 10 days to 2 weeks after, so that seems to go with the program.
I also take one/day with my largest meal, figure I'm getting some fat in then, as well. Initially, my most noticably symptom was dry mouth but I had a relatively easy time with it. (compared to some other things I've taken). (may your experience be the same.)
Adding Amoxy, afterwards, seemed to kick the Babs symptoms up a notch each time I raised the dose. I started at baby doses because I am a sissy baby, as Tincup would put it. So far so good, I'm handling it. Adding Artemsinin later kicked it up again.
I'm about 3 months on Malarone with the others following a little behind. I'm hoping to add Zith to the mix a little down the road. (I was unable to get Zith when I started treatment so went with what was affordable.)
Good luck and hopefully good progress coming your way.
true
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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We do seem to be getting a bit of a herx, in an encouraging way. After just 2 doses, the Malarone is stirring up some old, familiar prickly skin problems. Fiance says it feels like the Malarone is "going after" this.
This makes me feel better, since it's such guesswork to determine if babs is even in the picture. But now I'm thinking we're on the right track.
We should compare notes when you and he add the Zith into the mix.
To all you Malarone buddies: What are you using for liver support, since milk thistle doesn't mix with Malarone? I started a different thread with this question, but no answers yet, and I'm shy about "upping" my own posts.
Lots of warm wishes to you all, Aviva
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