posted
I plan on starting next week to add to my Zith and Plaq so I'd love to hear your experiences with this drug and tips. Posts: 319 | From nj | Registered: Jul 2008
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Start slow...buy gel caps and split the pills up. i am on week 5 and it has been hard. It is amplifying my CNS symptoms...anxiety!!!
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I'm on Day 5 and the pain the first few days was excruciating. I have never felt pain like this, I cannot describe it, it involved every nerve, fiber, bone, joint, and tissue of my being to the point where no pain cream or even pain pill seemed worth even trying.
Anyway it was only that excuciating for a few days, now it is mostly a few joints and my back hurts like hell.
I felt so much like I was going to stiffen up I started to move and walk. Today I walked a mile with a cane. Now considering I have barely been able to walk any further than the bathroom in all of 2010, I have to think somwhow this torturous drug is also helping me!
I walked a mile! Also, I am sleeping far less (I've been in a coma the whole year) and I am much more alert when awake. So in only five days I am seeing rather amazing improvements for myself.
I will gladly trade in fatigue for pain anyday. I have been crippled and bedridden by fatigue for about two years, to the point where I can do NOTHING, absolutely nothing, generally cannot even shower myself. This is actually the first glimmer of hope I've had that came followed by some result so far.
I hope it's real. I double the dose on Monday and know I'm in for lots more pain, but I don't care. Bring it on. Just get me out of this bed and interacting with the world again!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Our daughter made alot of progress on Rifampin.
We started with 1 capsule and two months later added in another. Good luck, Jane
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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My doc replaced Levaquin with Rifampin in February. My arm and shoulder/upper back, have undergone a transformation unlike anything I've ever experienced. One of my first symptoms ever was arm/shoulder/upper-back pain. I can't say for certain that it is the Rifampin, but I feel pretty sure that it is. I was put directly on 2x 300mg =600mg/day. Like so much with this disease, the pain has a timing element associated with it. The worst pain I experience is from about 3am to 4:30 am. Obviously sleep is being affected. I thought I could take anything until this arm pain started. It is pretty humbling. In your case though, who knows. I think there are plenty of people who don't experience such pain.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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