Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Whenever I have a mino/zith day I feel like I've gotten absolutely nowhere and I'll be sick forever. It's like clockwork -- I'll feel okay on my days off -- or at least start to feel better, and then back on the schedule I'll just get slammed.
Today - I was watching the clock. I took mino and zithromax at 1:30. By 3 I could not stay upright. I had to lie in bed and not move for two hours -- now it's seven hours later and I can at least type this post.
Sweating, full body trembling, brain fog like crazy, total loss of control over my environment, no energy to speak or think.
Is it supposed to be this bad two months into treatment? I just seem to be doing the same thing over and over.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I am feeling mostly worse also ...that what they say...im two months in on rocephin /zith ...are you treating babs with anything, cryptolepis sida acuta still?
Whats your cyst buster - Are you still on the tini...? What antifungals are you on....ya this aint living ...any improvements at all?..
I think the zith is letting something out of cells ..my bvt maybe getting it ..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Tinidazole two times a week. I had a strong reaction to it the first couple weeks when I bumped the dose, but now it seems like those are my good days.
It's weird. First I was dreading taking zith and then after a couple of days closing the pulse gap, now it seems like mino is gonna kill me. BVT definitely makes it worse.
I had actual good days though this week. Yesterday I was so normal I kept telling myself to prepare for it to change on a dime. Never happened. No shakes or twitches, not even lying down in bed. Neck pain was gone too.
Progress!
Today I'm back to just...despair. It feels like the past two months never happened.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Some of us can't take mino. I don't see how you do it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
It's the only abx that crosses the blood brain barrier as well as IV. I have late stage neuro lyme. If I wasn't doing this I'd have a PICC line like blue, but I've wondered the past few months if I'd be able to self-administer since I'm barely functional to begin with.
Guess I'm waiting for the day it doesn't make me pass out.
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The first two months are the worst for herxing. If you don't add more stuff to your protocol it should slowly lessen after that and you should have more good days than bad.
If you don't, back off the meds that are blasting you so badly.
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
. Thanks TC.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Funny i was thinking of switching to mino for a bit ..but is so hot here ...learning curve was steep for port iv s.a.s.h etc but did it .i didnt think i could plug a rife together...you are smarter than 3 neuroligist and a gerbil
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Get it right blue. Her neurologist smells like a gerbil. She said so.
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Someday, somewhere, someone is going to Google "can my gerbil get Lyme" and this thread will come up...
Posts: 2057 | From Florida | Registered: Feb 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
This gerbil thing has taken on a life of its own. So, last week I woke up after a night of soaking sweats. I thought, dang, I smell like jordana's post-- I smell like a gerbil!! I've always wondered how to describe this smell, but Jordana put a name to it.
Then I told my friend whom I met on ln about the whole gerbil post and how I realize I smell like a gerbil after night sweats and she exclaimed, "YES!! That is the musky smell I've been trying to describe to you. I smell like a gerbil." I said, "Oh, now I get it! Musky makes the smell sound much more alluring, so I didn't understand what you were talking about!"
Here comes the kicker. She went to her LLMD and told him that she found a better way to describe the musky smell she's been smelling-she said "Another way to put it is I smell like a gerbil sometimes." I wonder what her LLMD was thinking. Maybe, wow, maybe IDSA is right, these people are nuts!!??
Hahaha.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Ha.
Well at least someone else can relate!
Lyme= Gerbil Sweats.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Another friend recommended I get wood shavings.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Another thought. I was taking Tindamax/Tindazole for a while. It was great and really got into the brain. So for me (with omniceff)very important. I stopped because I think I got some bad batches of Tindamax/Tindazole that did worse than nothing.
But...even when the Tindamax/Tindazole was working great I now remember that not only was the Tindamax/Tindazole causing me headaches within a short time of taking it, but the longer I was on Tindamax/Tindazole the more severe the headaches were becoming. And if not causing headaches, generally just making me feel awful.
Ok, so real dilemma. Tindamax/Tindazole great for the brain, but causing headaches and making me feel bad at the same time.
Jordana, for me the winner was still taking Tindamax/Tindazole despite the pain. The pain was just another indication that the med was getting inside the brain (now look, I'm off Tindamax/Tindazole and I'm not using verbs half the time-where's the smile key)........
One day we'll get a leader who will challenge the medical community and government-the latter of which caused the modern spread of Lyme disease- and we'll force the government to develop the cure (just like another group who forced the government to cure a virus, no less).
In the meantime will go on with bad dilemmas and bad pain.
Also in the meantime, feel better. Hope at least my combative statements could put a smile on your face.
Still Winning
Posts: 55 | From Maryland | Registered: Aug 2014
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks for this comforting post. I get headaches from tindamax and zithromax, it just depends on the day. Some days there's no reaction to them and that puzzles me.
The headaches aren't exactly new but they're so intense they scare me. Brain inflammation worries me. I keep trying to figure it out when it happens - how to make it not happen, what does it mean, is it a good or bad sign.
But I guess this is the way it works. On the days I have a good day I'm grateful and elated and on the days I have a bad day I'm beside myself thinking nothing is working. I seem to be typical.
. Smile on my face.
Posts: 2057 | From Florida | Registered: Feb 2015
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Another thought about why sometimes you experience horrific pain on T and sometimes you don't.
Something similar happened to me concerning T. Over time I realized that the days I worked out (resistance exercises including shoulder shrugs with weights), when I was on a regimen with T, the next day I would be in terrific pain in the back of my neck and top of the shoulders. This does not happen when I'm not on a regimen of T.
Are you working out, exercising or doing some sort of lifting weight the day before the terrible pain starts?
Well, just a shot.
In the meantime, I see you're smiling, so keep it up. And let everything be well (as can be).
Still Winning
Posts: 55 | From Maryland | Registered: Aug 2014
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. Thanks TC.
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