lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Was doing well on 100mg 2 x day. Some say this is a high dose to start on, but my mood was better and I was getting out and doing some stuff with my kids.
I went to 300mg about 4 days ago and from the first day, I seem to be getting more sleepy. My Central Nervous System stuff started acting up (Anxiety, POTS, etc.).
I'm taking today off I think.
Not sure if it's the Minocycline or me just not making overall progress. So hard to say. Last week I was laughing at a bunch of stuff, my mood was so much better, I felt relaxed, and was out just about every day doing something with my kids.
It seems like since I went up to 300mg, my Head stuff is Flaring. I describe it as a swelling sensation, but only on the right side of my head. Lots of Occipital Neuralgia (both sides), Bizarre dreams, 12 hrs sleeping and wake up feeling confused, disoriented, and takes me a good hour or more to get back to Normal, which is way off my Normal.
I'm having crazy crazy dreams.
My right eye feels swollen when I get up. I suspect my infection is near the bundle of nerves behind the eye. I can feel so much of my head stuff behind that right eye going all the way to the back of my head.
So, just curious how hard hitting the Minocyline can be. How much of this is could be causing. Holding just to see if it's the drug is pointless IMHO. I guess I'll hold all day, see how I'm doing later and take just 100mg for the entire day tonight.
I can't stand the thought of doing NOTHING. I know this would never just go away on it's own. I know Minocycline is very strong and gets it's way good in the brain.
My plan was to work my way up and slowly introduce the Tindamax as last time, the Tindamax through me into a bad Tailspin.
My goal is to get to 400mg of the Minocycline and then to introduce the Tindamax again.
Why do I feel like I'm just spinning wheels in all of this ? No real progress or so it seems. I'm no longer short of breath.
My kids will be off to college and married if/when I ever get out of this.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
In five years, I haven't even been able to take my child anywhere on my own due to my symptoms, especially head pressure/swelling feeling. I have the swollen right eye issue too. I'd be thankful to even be able to do one thing with my kid on my own. Believe me though, I understand your frustration. It does seem like a path with no ending.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Is 300mg what your doctor prescribed or are you selftreating? It looks like pretty high dose. I do not know, where toxicity of mino begins but have never exceeded 200mg.
Posts: 125 | From eu | Registered: Dec 2010
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Seek, you and I and a few others should all get together and show up at Hopkins ER. See if they can figure this crap out.
Specifically you and a few others, you know who they are, have this a bit different then the others.
They would have to do something you would think. On the other hand, they could just put us in the Psych ward.
Trust me, I force myself to do some of what I do. Half the time I probably shouldn't be out on the road.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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I've been unable to go above 150 mg. daily on Minocin without extreme dizziness, fatigue, headaches, nausea, and frequent urination.
Good luck!
Posts: 118 | From Northern Virginia | Registered: Apr 2012
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
My Dr. said 400mg, 200mg 2 x day. I'm not self treating anything.
Just don't know how to get there. The fatigue is horrible and I didn't even really talk much about that as it's at the end of the line of my symptoms list.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I was on mino, 100 2x a day. but, when doc started me pulsing tindamax, I was to go off mino but stay on biaxin.
While I've read that mino and tindamax go together, I'm not so sure that is the best way to go.
I'm treating lyme cysts and bartonella. Also on A-bart.
Have either of you, seekhelp or lymetwister, ever treated for parasites? Just curious.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
200 mg. is a good dose. 100mg 2xday. I'm in your club. The drop dead fatigue is also last on my list- in fact I welcome the lead suit compared to the head/eye stuff.
Funny, how we're all so different and each suffer in our own way- individually. I think I've experienced every sx and the head stuff makes the rest feel pleasant to me....
Mino made me absolutely out of it.... like i was in another world. I always quit because I can't handle the head stuff getting worse. I give you credit for persevering.
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If the head stuff went away, I'd be so ecstatic I wouldn't know what to do. I agree Feelfit!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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![[Frown]](frown.gif)
Believe me though, I understand your frustration. It does seem like a path with no ending.
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