posted
Looking back over almost a year of treatment, I am seeing that IV Rocephin has had the most positive impact.
While taking it, my thinking was clearing up, and my cognitive skills were definitely coming around. The progress was slow but steady. As someone said on this board, Rocephin was my miracle drug.
It did a number on my gallbladder, so I had to come off. For the same reason, I am not able to tolerate the Omnicef/Ceftin versions; too much pain.
Are there other treatments out there that might work as well?
Thanks!
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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posted
Rocephin was also my miracle drug. it made me painfree, but it never cured me. and finally i also had a gallbladdercolic. trying mino now, but consider to go back on rocephin (4g). but the problem is: you can stay on orals forever, but you cant stay on rocephin forever!
Posts: 226 | From earth | Registered: Sep 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
High-dose amoxy works well for many, gets through the bbb, and I believe is processed through the kidneys. Might that work and be gentle on the gallbladder?
Posts: 2557 | From home | Registered: Aug 2006
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Is Amoxy similar to Doxy?
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
No, amoxicillin is a beta-lactam, related to penicillin. Doxy is in the same family as minocycline.
Posts: 2557 | From home | Registered: Aug 2006
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How long were you allowed to stay on IV Rocephin? Our doctor is saying that if there is no improvement within three months then he has to stop it. We are in week seven with no improvements.
Posts: 51 | From Connecticut | Registered: Sep 2008
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Lisa, it's a funny thing. I didn't realize I was seeing improvement with Rocephin either.
Then, I was pulled off while they scanned my gallbladder. While I was off, I took a nose dive. That was when I realized I was improving while taking it. My LLMD's PA said it happens all of the time.
The change is subtle and steady.
Thanks for the Tygacil suggestion, Kreynolds. I'll look into it!
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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Oh, Lisa, I forgot. I was on for 3 mos. total. Then they switched me to Doxy.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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Thanks Mazou -- they have my daughter on the Rocephin IV and oral Doryx 200 mg/day. Fourth day on the Doryx and she had lyme rage badly!
Posts: 51 | From Connecticut | Registered: Sep 2008
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The tetracyclines have been really rough on me as well. Hang in there; I think they really get in there and do the work.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I've been off it for about 3 weeks now after 10 weeks on and it's hell. All my pain and tremor and many other things had gone away, and they are all coming back. It sucks.
The only positive is that I was fatigued while on it I coudln't get out of bed; now I'm getting up more.
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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Did 1.5 years of multiple orals.. Then started Rochephin 8 weeks ago-- really has helped after four weeks. Looking to stay on for 4-6 months max. Also on Actigal.
Would recommend.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
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