Anyone have any experience with Monocycline? I hear it is very effective at treating neuro-Lyme, but very tough to tolerate. Thanks,
Posted by Lymetoo (Member # 743) on :
Minocycline works very well! Just go easy on the dosage at first. Do not start out with 200-300mg per day.
It's not any worse than any other med...but it does pack a powerful punch!!
Good luck with it!! Posted by Cobweb (Member # 10053) on :
Minocycline is the reason my main discussion with LLMD this week is going to be about how to balance and having a life.
I tolerated 200mg Mino okay, along with 2000 mg Ceftin. But then she doubled the mino dose-and the first increase to 300mg a day did me in.Thought I was going to die-seriously. I went back to 200mg a day-without even calling her.
Guess I'll have to face the music this coming thursday.
My 15 year old daughter is on 200 Mino-just started treatment. She can get out of bed and go to school-but reading her daily diary is so sad- for a teenager who's supposed to be having the time of her life.
Where's that Whammit Dammit Doll LymeMomtoo gave me- I want to whack the stuffing out of it- again-good thing she sent us a spare.
I don't know if it was a herx with the Mino or side effects, I just know life wasn't worth living in such condition.
How's that for being upbeat?
I'll let you know how the mino dilemma turns out.
CarolCobweBly
Posted by Lymetoo (Member # 743) on :
I could barely tolerate 200mg a day....and had to work up to that. No way would I have taken another med along with it.
Now we know why Carol is nuts!! Posted by TerryK (Member # 8552) on :
No wonder I feel so horrible. I'm on 400mg mino per day. Went up about a week ago. I was already feeling terrible on 300 but I've been feeling a lot worse since going up to 400.
I wasn't sure why I was feeling so awful because I'm also on 200 mg art 2X per day and I think that is also making me feel pretty sick. Then add questran and actos. I've slowly gone up in my dose on all of these things over the past month. Makes it hard to know what is making me so sick but from what I've read on this board, it could be any of these things. I can hardly function.:-( Terry
Posted by morningnewsman (Member # 5987) on :
I think there is a difference between Min-I-cycline and Min-O-cycline.
Anyone try Minocycline, or is there even a difference?
Posted by morningnewsman (Member # 5987) on :
Actually it is Mono-cycline, rather than Mini-cycline. Anyone use Mono-cycline? I hear it is worse than Minicycline, which I have used.
Posted by Cobweb (Member # 10053) on :
Okay- you just made me get out of my chair , walk to the kitchen, look at my medicine bottle-so I could confirm I am taking minOcycline.
The only Mini we have in the house is the dog-who needs flea medecine-or is that flee medecine.And is it medecine or medicine.
Wish I could just take flee medicine for Lyme -or is that Lime?
Balto Broad on Board, CB
Posted by sometimesdilly (Member # 9982) on :
(first, a good morning to Baltimore Broad)
As far as the mino- yikes. can't imagine 400 either. I'm on 200 total a day, and that is plenty. My DR gauged the amt in part on my weight- so that is a factor in dosing but umm.. that was why my dose was as high as 200.
It took me several weeks at least to adjust at all. Much more difficult to tolerate than amox, and I feel less well on it, but that could be because its working. Nausea and wicked heartburn and major insomnia were worst side affects for me initially, those are better now, going on to 2 full months of the stuff.
Dilly
Posted by AmyInMI (Member # 9506) on :
I was on Mino pulsed with Flagyll for the past 3 months, but changed to Azith and Amantidine because I felt like I was in a constant herx. I took the Flagyll one week a month and the 50mg Mino the other days. My neuro Lyme was WAY worse on this combo than it currently is. With my new combo I barely herxed and feel the best I have in 8 months.
Posted by Lymetoo (Member # 743) on :
I never heard of monocycline. I thought you meant mino.
Posted by Lymetoo (Member # 743) on :
I just went to www.drugdigest.com and typed in "monocycline"...all it came up with were things like Monistat and other anti-fungals...??
I did a search to and all I came up with was highlighted mino and mono they were specific in talking about mino then there would be typeO's mono.
Posted by Lymetoo (Member # 743) on :
Maybe the pharmacist got confused....like Groovy's bottle that said "for Limes disease!"
Posted by Cobweb (Member # 10053) on :
I feel like such a woos now- I quit the higher dose mino after three days. How do you spell woos as in sissy anyhow?
And Lymtoo-if I wasn't nuts, I'd go crazy ! And you all are so tolerant.
I've been waiting for a quiet spell in life events to try an increase in the mino again-but so far it hasn't happened.
Carol CobweB
Posted by Sojourner (Member # 9424) on :
Cobweb, Try Wus---that's the correct spelling. And no, I don't think you are one even if you wussed out on Mino---I read somewhere that B vitamins help with some of the side effects (dizziness, etc)
Posted by Lymetoo (Member # 743) on :
Even low dose will get you where you want to go...in my opinion. I never took more than 200mg ...except maybe one day or so of 300mg...enough for ME!
You're not a wus!
Posted by Cobweb (Member # 10053) on :
Yeah- not only am I not a wus-but now I know how to spell it !
And I just checked the subject of this thread and it definitely says MONOcycline- which I know nothing about.
If I could only remember to take my B vitamins-perhaps I could tolerate the Mini better-now I have to confess to LLMD about the vitamin B,too.
Oh my, problem is I have been forgetting my SAMe and Acetly-L also-and I can tell. I need to go back to month one when I was diligent and kept to my written med chart.
Lyme treatment can be so confusing for the already confused.
CarolcobweB
Posted by Jellybelly (Member # 7142) on :
Here, here. Wus' do exist. I am the Queen of Wus. I have not been able to get past 12 mgs. of Mino. Then the max I have been on it is about 5 or 6 weeks. Not only am I a wus, but I'm a weeny too. There is never a good time for me to herx. I HATE herxing!
Mino can kick butt. Thankfully for me, 12 mgs seems to work wonders. I was at 85-95% remission until being thrown head first into my 50s. I have no idea how I lived with Lyme for most of my life, cuz I sure can't cope now.
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