Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Minocycline just makes me feel terrible. I backed off all meds and herbs for three days because I could not even stand up, so obviously, that was a bad herx and I feel better now.
Within a day of taking really half the mino I should be taking, my mind starts going in slow motion and the days just slide by. I go into what I'd call a "treatment brownout" where I am doing nothing but taking my buhner herbs three times a day plus binders and just being miserable.
It makes me insanely depressed. It makes me think I'll NEVER get better, it's like impossible to think a positive thought when I'm on that stuff. And the thoughts I am having are gluey and slow.
Then I'll herx until I'm a little scared and stop for a couple days.
I can keep doing this. If I can come up for air every couple of days, get a shower and stuff and pay bills and so on, that's fine. I mean not fine, but I can do it.
What I don't understand is what the brownout means. Does it mean I'm killing Borrellia or does it mean that drug is just designed to make you feel crappy whether you're killing borrellia or not?
Does everybody feel better off meds? When I first read about treatment what I expected was to feel normal/sick and then cyclically awful and then normal/sick again, not grindingly bad always.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I know what you are feeling. There were times I couldn't hack the pain anymore and just stopped treatment for a few weeks or months.
I believe now that I should have pushed through some of those episodes. But my LLMD would not prescribe benzos for sleep. I really think that if I had been able to knock myself out at night, I would have managed better.
I remember about a year in I told him I needed morphine. He told me to just stop treatment for awhile.
I believe pulsing is the way to go (but not for bart), so if you can manage to dose for a few days then take a few days off to heal, that might be better for you.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
BTW, consider med. marijuana if it is legal there. It lessened my pain by half during a real bad spell. CBD oil, high dose, with no THC. It is neuroprotective and calming.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
you know I really don't have too much pain yet, except in a couple places; I haven't needed painkillers even for the migraines.
What freaks me out is the shakes I have get worse, and the muscle weakness scares the crap out of me and makes me think I'm declining...it's all mental when it comes down it. The problem is that during a neuro herx you don't have the brain cells to think rationally about it. Just mindless terror and crushing depression.
I have benzos and I knock myself out *every* night. I think I'd be locked up at this point if I didn't.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Maybe the shakes are from the benzos? They can turn on you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks Lymetoo, I did think of that. I dropped them for about five months for a while and kept shaking. It's better off abx but never gone.
Posts: 2057 | From Florida | Registered: Feb 2015
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I read the title of this thread as the,,,, 'deplaint compartment'
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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