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Doing well on Vanco/Flagyl after relapse

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Posted 4/9/2010 4:41 PM (GMT 0)
Hi Everyone,

Well, after being in remission for 2 1/2 yrs and being bummed out about this relapse, I honestly feel that I have the upper hand in this disease so far...knock on wood...I know very well how crappy this disease is after 22 years experience.

I caught the relapse quickly, got right to Dr C, and got my picc line back in and back on the meds all within 1 week. 

I feel like a million bucks again on Vanco.  I feel just like I did before my last treatment ended.  I have had two herxes at night but take my pain meds and wake up the next day feeling fine.  I am going to stay the course for 4 weeks and go from there but hope to be back to my normal self before long.

There is hope!!!

Anne

Posted 4/9/2010 6:10 PM (GMT 0)
Thanks for posting this.

It is easy to worry about relapses, so it helps a lot to know that they can be managed if caught quickly.
Posted 4/9/2010 6:51 PM (GMT 0)
Sorry to hear that you're experiencing relapse after more than two years. It's good that you have a doctor and treatment that you are confident in. Wood you mind sharing which symptoms returned during relapse?

Hope that you are feeling better real soon.
Posted 4/9/2010 7:21 PM (GMT 0)
My symptoms started a few months ago and were increased pain, numbness in hands, sensitivity to light and sound, and fatigue. I have had chronic pain but it has been manageable up to this point.

My LLMD feels that either stress or the herniated disc prompted the relapse. I knew very quickly what was going on and am feeling much better now back on abx.
Posted 4/9/2010 8:31 PM (GMT 0)
PIF,
I share a lot of those same symptoms except for the chronic pain. Unfortunately, my numbness is just about everywhere and has become a major distraction for me. Glad to hear that you are feeling better with the abx.
Posted 4/9/2010 8:49 PM (GMT 0)
betterhealth,

How long have you been in treatment? Have they tried anything besides the doxy/rocephin? I have been on almost everything that's common out there...doxy, rocephin/flagyl/zith, rifampin/levaquin, vanco/alinia, and the vanco/flagyl really made a big difference quick way back in 08 after months of trying many other things with little results. I know I have been on many of the other things also...it all seems like a blur now.
My numbness comes and goes...the pain other than my chronic back and neck pain started back as this deep bone feeling pain (achey) from either my elbows to my fingers or my hips down or both. When that happens I cannot function. That is how I knew it was back and that is what my major issue is during a herx. One thing I forgot to mention is the "electrical shock" twitches and the sudden jerking movments. These things started slow and were off and on and then when I herniated the disc it was all downhill fast. I knew withing about 5-7 days of doing that I was in trouble. My family doc said "oh, take some steroids and see if it clears up." I said "NO WAY...steroid injections are what made my Lyme come screaming out back in 2007. He then remembered and also noticed it has a big red warning sticker on my file that says NO STEROIDS.

I hate this disease and wish all of you all the best...I am an example that treatment does work...even after 20 yrs. You just have to take care of yourself, keep stress down, and be very attentive to every signal your body is sending you.

Even though your numbness is all over, don't lose faith...I couldn't even walk for 4 months in 2007 from the severe pain, my adrenals werent functioning, I had tachycardia, palps, and pvs's and I was in severe trouble. I had 5 specialists all treating me. I got better...better than I have been since a teenager. This is just a hiccup.

Keep the faith!!!

ALL OF YOU!!!

Anne
Posted 4/9/2010 9:29 PM (GMT 0)
Hi Anne,

I first got sick last June and have taken the following atibiotics so far: Cipro, Doxycyline, Amoxicilin and IV-Rocephin. I just saw a new LLMD today and he has prescribed arithromax and amoxicillin to start and he stated that he will change the mix from time to time. I do also experience the same random twitches that you describe. My neuro had talked me into doing a prednisone treatment which I started and quickly abandon last week when it intensified my lyme symtoms. The new LLMD was not to thrilled that I had agreed to do the prednisone but thought that it probably didn't do to much harm because it was only for four days.

I also experience a wierd pulsating adrenaline type sensation radiating from my lower back. It is always present and directly stimulated by caffine and stress/anxiety. It exasperates the numbness throughout my body. I am not aware of anybody here with this strange symptom.

I am still hopeful for a full recovery however, I realize that there may be some periodic relapses to deal with.

Thanks for sharing your story....
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