posted
Son was just put on mino with plaquenil and tindamax - he has all neuro issues. Will be starting this tomorrow.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
Any reports from those who have done mino or plaq? Are there any success stories?
Posts: 131 | From Neptune, NJ | Registered: Oct 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I'm on Mino now. Just 50 mg/day is helping my neuro symptoms. My LLMD said at such a low dose, it must be helping because it's an anti-inflammatory drug.
I know it's part of the roadback foundations antibiotic protocol for "auto-immune" illnesses. That's a plus for me because I am HLA-DR4 positive and have a tendency toward auto-immunity.
Thanks to whomever it was who told me about the roadback. Had I not known about it, I never would have been willing to try Mino at such a low dose.
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I've been on mino for 2 months and I definitely feel that it's made my brain and thinking clearer. It made me very depressed at first but that's cleared up. It also lessened the intensity of my headache.
I'm being cut off from it when I run out in a week. PCP who rxd it wants me to go back to LLMD, but I want to try Byron White's A-L first. I'm on A-Bart now.
Posts: 1297 | From USA | Registered: Dec 2002
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posted
I'm just starting both of these drugs today, along with Zithromax. I'm supposed to take one zith, two plaq and two mino per day, but I'm going to start with one of each (zith with breakfast, plaq with lunch, mino after dinner) just to see if any of them are causing side effects. Almost all of my major Lyme issues are neuro related (fatigue, brain fog, poor memory) so I'm happy to hear some of the positive results the rest of you are seeing in that regard!
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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posted
I was on mino and zyth for first six months of treatment. They helped with my neuro lyme symptoms alot. Mino made me a little dizzy initially but then I did fine.
Good luck!
Posts: 238 | From new england | Registered: Feb 2013
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posted
Okay, I'm glad I checked back in. With the minocycline, I am experiencing only what I can describe as being off kilter. It happens when I get out of bed in the morning (I take my pills after dinner) so it doesn't set in for several hours. It's like I'm off balance and couldn't walk a straight line if I had to. I'm hoping it goes away in a few more days.
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I walked into walls when I started Mino. Went away during the first week.
It's been one of my best Lyme meds. Great for brain fog and gut inflammation.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Minocycline gave me terrible vertigo and dizziness. I had to sit and lay down all the time.
I then started to have rages and mood swings.
The second week it got worse, my face and neck started swelling. It felt like I was wearing a mask.
My doc took me off minocycline because I was allergic (not a herx).
My doc had put me on a minocycline/doxy combo because it was summer and she didn't want me to burn in the hot California sun.
After the disastrous mino experience, we just doubled the doxy.
Posts: 2839 | From California | Registered: Jul 2012
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
These are the order of cyclines that worked vs not worked for me.
Tetracycline (an older cycline & did not do much for me)
Minocycline (worked better than Tetra, but not as good as Doxy)
Doxycycline (worked the best & took many of my symptoms away initially)
Doryx (Slow release doxy. Works very nicely & as effective as doxy. It helps to keep me from declining rapidly).
Keep in mind that Doxy was tested & found to form 200% cysts in the lab. It explains the rapid improvement within a month for me & then slow ongoing progression afterwards.
Posts: 2087 | From NY | Registered: Oct 2011
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gmb
Unregistered
posted
I just restarted mino last week after one month off all ABX while on Coartem. Mino was very mild for me in the past in combo with other ABX.
Today I added in Palquenil and next week will add Rifampin. I've taken them both in the past with other combos but never together. I expect Plaq to be fairly mild with the mino.
posted
Judie, are you sure it was an allergic reaction? Sounds more like you were experiencing a herx with a big flare of Bart symptoms. Minocycline is such a good penetrating drug that we see this often.
Posts: 57 | From CT | Registered: Jan 2005
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posted
Combo of Mino and Plaquenil helped me a lot, cleared my brain.
It did not cause big herxes, it took some time to see the improvements but worked very well.
It felt like good symptoms maintenance combo for me- LLMD confirmed it is great maintenance abx combo.
Posts: 191 | From va | Registered: Sep 2008
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When you say brain symptoms, what kind of symptoms did you have?
Posts: 922 | From Philadelphia | Registered: Sep 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I disliked Mino a lot- not because it made me herx- I had taken it toward the 'end' after Levaquin, Cipro, months of Doxy, 6 months of Bicillin,
but it made me so tired- just completely wiped out. And, it stained my back molars dark (dentist was able to get off- Doxy did same thing)
I was also very dizzy on it- 2 months.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Just an FYI dizziness may not be a herx. It may actually be a serious side effect. It happened to me with clindamycin and I was advised to stop taking it.
Posts: 1748 | From United States | Registered: Dec 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Ellen is right. Mino has the potential for a serious side effect, NOT to be confused with a herx. Dizziness and ear issues.
I was on mino for 2 months, with other abx.
Initially about 3 days after starting mino I got horrendous torso twitches that would last an hour or two at a time. It gradually went away.
I seem to get about 6 effective weeks out of each abx I try, and then they don't work anymore. Mino unfortunately is one of those abx.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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