seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm not sure what to make of something. I have been on a variety of drug treatments, albeit much too much monotherapy. I've tried Ceftin, Biaxin, Zith, Plaquenil, Clindamycin, Quinine, Doxy (for a few days), Omnicef, Malarone (baby dosing). I failed Rifampin and Bactrim DS miserably due to horrid reactions.
I'm currently on 1,000 mg Zith / 2 tsp Mepron daily. I've done this 30 days now. I had to take a couple 2 day breaks due to bad herx reactions presumably.
i used to be on Biaxin - 1,000 mg daily.
I'm so lost on my response. With the Babesia treatment, I have had some better days than I did in a long time after two big herxes. However, I set myself back doing 5 min on an exercise bike and light weights. Now I'm stiff a a board, neck locking up, and horrid muscular issues.
One thing I see that has been positively impacted by Babs treatment is anxiety. My anxiety levels went down a lot from pre-Mepron days. I had a period of 2-3 days during my second flare up where my heart was beating, shaky as can be, chattering teeth feeling. The following day, it was like a sense of calmness took over.
Well, the above is nice, BUT I'm having exaggeration of debilitating symptoms too that were much less serious on Biaxin. Biaxin helped my neck stiffness some, clearer head. My job involves intense computer work and with my muscles locking up and neck stiff as a board, it's impossible. It's devastating.
I'm coming to the realization I may never be able to do this job, which I'm great at. It frightens and saddens me. Who can think when there neck and head feels like it's in a vice grip? My eyesight is more strained too now when off Biaxin.
My spin just feels pressured all the time. I try to sleep and I'm constantly stretching my spine and pushing my legs out to take pressure off. I have mild herniation in my L4/L5, and minor bulging discs in C4-C7.
I just crack and pop everyway I move. I can't turn my neck, lift my shoulder, go up a stair, twist w/o severe crackling / popping in my joints. I feel beyond return and 90 years old.
My elbows are stiff constantly. My calves feel tight.
Is this hopeless, seriously? If I can't stop the spasticity, I'll never be able to work. Baclofen does little. It's like a bandaid. I've tried Flexeril, Skelaxin, and others. They didn't help. Valium helps a bit more, but no doc will Rx it for me.
I feel like my body has been invaded and this crap is everywhere. My shoulders have arthritis equivalent to someone 45 years older than my age.
Is there anything to really look forward to?
I'm seriously wondering if I may have an undiagnosed Arnold Chiari malformation too as I have tons of those symptoms. I even have mild central sleep apnea.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The snapping and cracking is typically caused by inflammation. Inflammation is the result of die-off, natural or otherwise. I was told that the debri from the die off gets stuck in tissues etc. and causes inflammation. Inflammation could be responsible for a lot of your symptoms. There are many posts here in the archives regarding natural treatment for inflammation. That should help a lot.
A month of babesia treatment isn't very long. Sounds like you've had improvement and need to continue with babs and lyme treatment.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Well Seek some of this actually sounds promising. I think the way you describe the good stuff and then the bad, is the way lyme works. You make slight progress, then take a step back.
This is how it has been with me. I finally started feeling like I actually am getting better; but still have bad times that are discouraging. Maybe since you have seen some slight improvement, you are heading toward "turning the corner".
I would hang in there and keep taking exactly what you have been taking that has brought you even the slightest relief. Obviously it did a little bit for you.
Your LLMD won't give you valium? Mine says it works very well for muscle tightness. I can't take it though. Has an opposite effect for some reason, makes me anxious, even though I can take xanax. Xanax does not do the same thing for the muscles though.
Speaking of the shoulders. UGGH! I had the most horrible shoulder issues for over a year. Got diagnosed with Frozen Shoulders right before I found out it was LD. I literally could not move them. I would almost cry when I had to change my clothes, etc. Couldn't cook, because I couldn't lift a pan. Well that is now gone. 100% completely gone over the last 6 months. So don't give up hope on that!
I think there is plenty to look forward to. Give yourself another 6 months on your treatment, then re-look at everything.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Have you asked your doctor if you can go back to the Biaxin? Zith and Biaxin are part of the same family of drugs but they are different. I'm on Biaxin now but the Zith gave me diahrea. Dr. B's guidelines say you can use either with the Mepron for Babesia.
Maybe it's worth trying the Biaxin to see if that makes a difference.
Just my two cents.
B4Lyme
Posts: 144 | From PA | Registered: Nov 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My ID doc refuses to use Biaxin w/Mepron. I'm working on doing what I can in the meantime until better situations arise.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Terry, not a lot came up with a search using those words, but I know they are out there. Things that come to mind are: Tumeric, Systemic Enzymes, Ginger. My CRP and SED Rate have always been normal, but I had a C3a over 12,000 a month ago.
It could be inflammation and may very well be as anti-inflammatories like Ibuprofen and Daypro take the edge off a horrid episode. Much more than muscle relaxers.
I have Serrapeptase and Nano(sp??) capsules. Maybe I should try them again.
I can't stop the constant eye/nose liquid draining out. My spouse said it looked like I was crying. Crazy. My eyes get all swollen. They're puffy underneath. Phlegm in my throat. I am gluten/diary-free.
It's A crap way to live day in and day out. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Baclofen does little. It's like a bandaid. I've tried Flexeril, Skelaxin, and others. They didn't help. Valium helps a bit more, but no doc will Rx it for me. 
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