posted
I've been looking into antibiotic options, should my current treatment not produce results.
I think that tigecycline could be very promising. (I've already got the PICC, so that's not an issue.) However, I know it's REALLY expensive. But how expensive?
So a couple of questions:
1) What's a normal dose of tigecycline for Lyme?
2) Anyone have a rough estimate of cost? (Of course, once I know the dosage, then I could figure out cost.)
I'm just trying to gauge the potential cost/benefit, so I can be more informed when if I bring it up with my LLMD.
Thanks!
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I really don't know any answers for you but someone just mentioned this at our Lyme Support meeting. In that it killed everything and they were going to soon try it..Peeked my interest.
Let us know if you go this route..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Tigecycline is powerful. The worst part for me was the nausea. Nothing I've ever been on has caused such intense non-stop nausea. Even thinking about Tigecycline and mepron right now is forcing my gag reflex.
It wasn't until after I went to my follow-up a month later that I discovered this is a fairly common side-effect and my LLMD normally writes an RX for an anti-nausea med just in case.
Somehow this was missed for me and the nurses didn't pick up on it when I called in or they called me. I hope you are one of the lucky ones and don't have this side effect. Please be prepared and ask for an anti-nausea med if you need it.
Levaquin followed by Tigecycline really kicked my butt. For a few months after I was convinced that this combo had destroyed all progress. My LLMD followed up with a final round of Rochephin.
In the end I think the Tige helped. BTW, after you stop the Tige, the nausea, at least for me, hung around for a few days - don't let that freak you out- Go for it if you can!
Posts: 237 | From WV | Registered: Mar 2007
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posted
Motown--- How long were you on the tigecycline?
AnnaL---- With a middle name like Sojourner you must of had cool parents! As a history teacher, I always enjoyed introducing my high school students to Sojourner Truth. She is one of my heros!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
My LLMD initially first suggested we try Tigecycline the first time I saw him. This was about two years ago.
We then decided to go the Rocephin way. Followed by Doxy, Zithromax, and Cefepime. I am better but nowhere near healthy.
I see him again in two days. I will request that I try Tigecycline. I'm hearing great info about this drug. I will get on it and let people know the results.
One thing in a book that I have says
" most hopeful breakthrough from these findings relates to more effective treatment for Lyme disease with the powerful antibiotic tigecycline. Tigecycline kills Lyme in twenty-four hours in a test tube!
Dr. L says this is 100 times more active against the spirochetes than Doxycycline, a universally preferred drug at the moment."
So it looks promising.
KA
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
how long are people taking this?
Posts: 3528 | From US | Registered: Apr 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Infuserve quoted a price of $5,010 per month, including supplies, plus shipping. Not for the faint of heart, if you have to pay out-of-pocket, as I would. I checked to see if Patient Assistance was possible either with the manufacturer, Wyeth, or any other way. None is available for this med. Unfortunately.
I really want to do it, but am not sure if it's worth paying that much or not. It's a hefty cost!
Posts: 3771 | From around | Registered: Mar 2008
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posted
DMC - I tried to IM you but your box is full.
Do you mind if I ask how you got a blood clot and how did they treat it? I recently got a port and I have been told that I need to think about blood clots. Did you have a PICC?
So the benefits you received were lost?
How long have you been ill?
Thanks,
Haley
Posts: 86 | From California | Registered: Oct 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Bigstan, i presume you don't see a MI LLMD? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
DMC, I have had two blood clots and they still gave me another line. Curious as to why getting a clot precluded you from continuing with treatment, what kind of clot was it? Mine were just superficial at the PICC site, but even though I have a clotting disorder I am still able to have a line, I just take low dose Coumadin.
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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