fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
So I took a break from all orals Friday and Sat. I felt great Sat night. I took 1 dose Sun and one this morning and my head and ears feel like they are going to explode. Dr wants me to back down to 1/2 tsp BID.
I am not sure what to do, this is awful, I have itching by my ears and temples. My head is pulsating. I want to push through this.
What have / would you do ?
I don't like pain killers but they may be the only answer to push me through this.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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I wouldn't want to feel miserable. I've been on Mepron for close to two years. It builds up in your body, so for now, the dose may be too high.
Posts: 964 | From san diego | Registered: Oct 2009
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
I never backed down, stayed at 1 tsp BID. Head pressure has gotten better but I have bad anxiety and heart pounding. I just feel "weird" The fatigue has also lessened slightly. I still have the dizziness, especially in the daytime at work for some reason ?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Why are you on it for two years ???
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
Good question.... guess because my doc doesn't believe in taking stuff away, just adding.
We're trying to formulate an exit strategy, but it's scary to get off a drug that has helped so much.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
I have been on Mepron for 2 years 6 months baileypup. When I tryed to go off I crashed and was sooooo sick- so am still on. My doc says he has many on it for longer than I have been on.
to ffutterby, I would just push through. I have used tramadol for pain. It is worth it. I know about the symptoms you describe. Just know that you are progressing. I am getting ready to go off again and feel 90% better than before treatment.
-------------------- Kitty Lyme, Babesia, XMRV virus Diagnosed 2008 Mepron, Zithro, Cepaflexin, Fluconozol, Vitamin, Herb therapy Posts: 65 | From Kansas | Registered: May 2009
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posted
those that have been on mepron for a long time....have you tried anything else? Coartem, malarone, or quinine/clindamyacin?
I started mepron last Wed. Did not really notice anything different until I got to the full dose. I woke up with night sweats this morning.
If you are herxing too bad I would back down, if it is tolerable then push through it. Are you taking art too?
Posts: 323 | From Michigan | Registered: Sep 2006
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posted
Marcie, I'm also on lariam every four days, along with Mepron.
I tried clindamycin/quinine, and couldn't tolerate it - had a terrible herx.
Tried malarone, and started backsliding, so I know it wasn't as effective for me.
Posts: 964 | From san diego | Registered: Oct 2009
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
I feel like an alien, lol. Especially at night. Xanax was my best friend the past few days. I never take anti anxiety or pain killers. This by far is the most horrible feeling. I am only 5 weeks at full dose so I am not backing down now. I must be herxing. I can do this !
What is larium ?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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