posted
I have been on IV therapy since Oct of 12. I feel
about 20% better. I take 1GM IV flagyl 2x/day, 2GM
IV ceftriaxone, augmentin 875mg 2/day, fentanyl
patch 75mcg, oxycodone, lyrica, and lots of other
meds & vitamins. After being basically bedridden
since Nov 09, I find the length of this illness is
slowly making me lose hope. I was so happy when l
first started antibiotics and it stopped the disease
from progressing. I've heard of the clinic in
Arizona, but I have only heard horrible outcomes.
PLEASE HELP
-------------------- Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro. Posts: 51 | From Chicago | Registered: Jun 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Don't lose hope!
Have you been treated for coinfections?
Personally I had terrible pain control with "Heavies". They just didn't work for my neuro lyme pain. Didn't even touch it. And they made me feel super dopey and even more unmotivated than usual. Granted I just used IV hydromorphone and liquid morphine. Not the ones you're on.
Is there anyway you can talk to your doc about weaning off even one of those? Maybe finding a different method of pain control?
Did you symptom track when you first started IV? If you could find those notes, maybe you could compare to where you are now.
20% isn't too bad, but I know what you mean...50% would be better.
Perhaps if your doc hasn't addressed coinfections after a year...it may be time to talk to your doc about it.
I wish I had some better suggestions. Others with more experience will chime in soon.
Take care. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I hope I don't sound patronizing-I am in the middle of an IV and can feel neuro herx coming on.
I am trying to get this ideas out before I crash.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Have you read Dr H's book: "Why Can't I Get Better?"
Maybe you can find some of the other things that Lyme has messed up that are keeping you sick.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I too would be wondering about your coinfection status and whether you have been treated for any of them.
In the book by Dr. H he says if you have nails in your foot, you can't just pull out one of them to get better, have to pull them all out. So, seems like you need to be determining what other nails you might have also.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Thanks for your ideas. My Dr recently increased some of the Abx. I only wish there were a faster way so you don't lose your mind during the process.
Posts: 51 | From Chicago | Registered: Jun 2011
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