posted
My llmd put me on mino 200 mg daily, I started with 100 mg first to see how I do. Has anyone been on this drug for lyme and what was your experience. I have heard it can cause alot of dizziness which is my main symptom to begin with. I will be pulsiing flagyl in every other week. Any success with this drug?
thanks Diana
Posts: 256 | From Boston, mass | Registered: Jan 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Daughter started with Mino in the beginning. She started with 50mg and worked up to 100mg.
She was never able to take more than 50mg twice a day. I would say it did help.
Good luck, I hope it works for you.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I'm on 400mg per day. First week was tough with dizziness and increased tinnitus. But turbot got better.
-------------------- 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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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I too had good luck with this med overall. I believe it is one that crosses the brain barrier which makes it a good choice.
It's all about "finding the right drug for the right bug". Good luck and keep us posted.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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penguingirl
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I hope it works well for you - I could not tolerate it - 20 x to bathrooom daily and not even on the full dose (like 200 mg)
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
My daughter was put and this and I was nervous because she has vestibular damage and vertigo. However, it was this medication, IMO, that helped with cognitive symptoms and a decrease in vertigo overall. Was not the end-all to her symptoms but it was important in her road to recovery. I believe it is better at crossing the blood brain barrier than some other meds.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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posted
Minocycline worked very well for me. I was having terrible headaches due to swelling in my brain and, while the doxy helped at first, I really felt much better when I switched to mino. Reportedly it crosses the blood brain barrier better than doxy. I also added in a cyst buster shortly after I went on mino, and that really helped as well, which is consistent with Eva Sapi's research.
Posts: 40 | From New York | Registered: Mar 2010
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I did the same, if you take 50mg and increase by 50mg every 7 days your body will probably adjust.
I had terrible dizziness too at first.
Mariski- What cyst buster did you use? I'm not familiar with Eva Sapi... who is she? I'll google her.
Chootik
Posts: 247 | From Ca | Registered: Feb 2007
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I started full dose right away as I didn't know any better and have done fine. Three months now.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I just restarted my Mino, half a dose today (100mg), and already I am having ringing in my ears and dizziness and somewhat feeling like a headache in my temple.
I wonder if I should try doing the half dose every other day for this week to see if I can tolerate it, then ramp up from there.
Sometimes I wonder what's making me more sick--the lyme and co or the meds....
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
It doesn't cause me to get dizzy. I do notice my ears ringing off and on but nothing too bad.
Im on 200 mg 2X day
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I has a good experience with Minocycline. It made me herx quite a bit though. 200 mg/d maximum dosage. Watch out for sun exposure.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
I had what they call "staining" with it, so I had to discontinue and go on doxy. It looked like black small bruises on my skin, lots of them. I'm not sure why or if it hurts anything, but my doc stopped it and they eventually went away. FYI
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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SO I have to wait another day to get any kindo f advice on how to proceed.
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