Topic: Stopped Doxy, now on Minocycline... Mino Seems tougher to take. CNS Symptoms Flaring
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Curious if anyone else had trouble with this drug.
Doxy was tolerable for me and perhaps even helping, but the Sunburn stuff was insane. MD said lets try Minocycline.
I'm 3 days in at 200mg 2 x day. Every time I dose, within 10 min. my Anxiety and entire CNS starts going crazy, which would also include shortness of breath, overstimulation, emotional lability, etc.
Oh yeah, I'm feeling super dizzy off balance on this drug too. I even fell a bit confused on this drug, like I know where I am, but lost at the same time.. Weird, some kind of disorientation and lots of 3rd person stuff.
Hard to say if I'm hitting it or just myself over the head again.
I havn't cried in like 3 weeks, but feels like it's creeping back up on me on this drug.
Lastly, my teeth and gums hurt now, so bad in the morning.. This would be the same pain that the dentist says nothing is wrong on the exam.
So, the million dollar question is: Is Minocycline a good drug by itself. Are the side effects above common in Lyme ? Is Doxy better for the Brain stuff or the Mino ?
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Minocycline is known to cause dizziness and other vestibular side effects, particularly in women. (Sorry, I don't know your gender.) Your other side effects also sound pretty common for mino.
I lasted 3 days on mino. My husband lasted about a week. The side effects were just too much. I was so out of it that I was running into walls, couldn't drive, etc.
Mino also can cause sun sensitivity, though perhaps not as much as doxy. If you were doing OK with the doxy except the sun issue, you might want to just spend the summer covered up. Coolibar.com has a bunch of great non-toxic sunscreens, plus sun-protective clothing.
Even in a cloudy Seattle spring, I needed the full cover up--long pants, long sleeves, big hat, sunglasses, and even hand protectors and a face shield. (I'm also as pale and sun sensitive as they come normally.)
Obviously the choice is yours. Both drugs are good; the question is which side effects are easier to live with. Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
My LLMD had me start it with 2 50 mg doses for the first week, then up to regular dosing. I think it helps to start slow.
I've been on it for about 4 months so far. I haven't had much trouble.
Posts: 845 | From Northeast | Registered: May 2011
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I've researched Mino on this website and the majority of people who use it say they were glad they stuck with it. In the long run it seems to have great CNS benefits.
I agree with going slow. Need to allow your body to adjust to the med and you lessen up on the herxes.
Dizziness is usually a clear indicator that something is upsetting the liver. Mino can be tough on the liver.
Isn't 400mg/day of mino really high to start at?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Just figured some of it out.. Half life is long... 11-24 hrs.
Supposedly, gets in the brain pretty good too.
And....... I think that 400mg dose is a bit high to jump right in to.
Gonna hold a few doses.. Suppose to take my kids to the Ocean on Monday.. Don't want to ruin that.. I'm so dizzy right now when I stand up. This is a new symptom since starting this drug.
Also giving me massive fatigue in the head.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
400 mg is presented as the top tolerable dose, with the need for frequent monitoring. I "fell off" of mino twice by starting at a normal rate.
This time, I started by cutting the capsules in half and adding 50 mg every four days.
Worked like a charm, I am tolerating 300 mg (I'm a small woman) with minimal side effects. Anxiety is tough, though.
I have been able to be out in the sun with sunscreen and no problems.I am taking a good B-Complex supplement.
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
mino was really hard for me in the beginning but I stuck it out and so many of the cognitive issues I had got better. Brain fog got so much better, less anxiety, shooting electrical current weird sensations in my head stopped. It crosses the blood brain barrier...so it was more effective than doxy for me.
Ive been on it about 7 months i think, Ive had some issues with skin discoloration, and my pinky nail turned grey..hope those will reverse.
Side effects for me was numbness and tingling which got alot better after a month or so on it. Initially I felt alot of head pressure/headaches..idk if Im right but I attributed that to the medicine actually getting into my brain.
I think I saw the most progress after I went on it. Now Im trying to fight babs.,...so im miserable again, but at least I can think straight. lol
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Jennifer
Do you think it could have effects on Bart?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I think between the Doxy and the Mino, I'm really hitting things.
I feel like crap, but I'm still able to get out and do stuff and that is EVERYTHING !!!
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
a) MIno causes dizziness as others have described. I was on 400mg / day too. The dizziness was different than the lyme/babs dizziness I had before.
b) Sounds like Bart is flaring.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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