Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I saw my doctor today; I'll be starting IV Tigecycline in about two weeks, give or take with the holiday next week.
I go on Monday to see the doctor who will be writing the prescription (neurologist) and they said from that appt, it will only take about a week to get a PICC line inserted and the medication started.
I'm so excited! My LLD said that Tigecycline is THE most effective drug out there for Lyme Disease.
Unfortunately due to the political climate, he is unwilling to write the prescription himself until there has been at least one published peer reviewed article regarding its use with regard to Lyme Disease.
He did, however, say that neurologists have more legal latitude in being able to prescribe whatever they choose, so I will be seeing the neurologist he works in conjunction with; who has begun treating several Lyme patients with IV Tigecycline.
I will keep you posted! He said to expect a MONSTER herx, but I'm very hopeful this may be the key to my recovery!
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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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Tracy, That's exciting news! Best wishes to you, I hope it is quick and effective. Please keep us posted!! Posts: 2557 | From home | Registered: Aug 2006
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posted
Oh WOW!!! That is excellent. Please keep us updated and let us hear the TIGER roar too. Tigecycline....It's GRRREEAAAT! (in my best Tony the Tiger voice)
I wish you the best.
Wanted to PM you but your box is full.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I hope you can support your liver now - and then - so the herx can be kinder.
posted
I looked up Tigecycline. Looks like it's a next generation derivative of Minocycline and is considered bacteriostatic, which messes with Borrelia's outer protein coat structure rather than try to kill it outright. It "cripples" them before they have a chance to curl up into a ball.
Seems superior to the often used Rocephin, which simply ends up creating a myriad of cyst forms waiting to come back full force.
Posts: 655 | From USA | Registered: Sep 2007
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We are about 4 weeks behind you in getting started with tigecycline. Would love to hear more about your experience with the Tiger. Dosing, frequency of dosing, herx experience etc...
-------------------- When you are going through hell, just keep going. Winston Churchill Posts: 20 | From Georgia | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
tracy,
Good luck and keep us posted. In Cure Unkown, a biologist named LUFT has been experimenting w/ Tigecycline.
He has found that tigecycline blocks the efflux pump and that it is 100 times more effective than doxy. He states that doxy only cripples the ketes, rocephin kills them, but it takes a very long time.
Tigecycline KILLS Bb quick. Luft said that w/ Tigecycline in vitro (test tube) kills Bb w/in 24 hours!!!
HOPING THAT THIS IS YOUR MAGIC BULLET, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hope it works well for you.
if its better than mino and roc, than id say you have a good chance of having some good improvements on it.
please keep us posted on your progress.
is ins covering it?
best wishes
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Donna....you too! Fabulous! I can't wait to hear of your experiences too.
I fantasize that my husband will be able to go on this, but being so far from Ct, I don't know how it would work.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Anybody getting it for less than 100 bucks a day + supplies?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I am hoping my insurance will cover it, otherwise I can't do it. So far, it looks like they will.
I have Medicaid and they have paid for everything else I've been on with no problems at all. There is no reason to think they would deny this. In fact they have a standard of care where the first month of ANY med is covered automatically before a prior auth is even needed.
Is anyone getting it anywhere other than CT? Just curious. I cant' wait to get there.
This LLMD also takes insurance, which was surprising. My state insurance won't cover, but I'll do anything to be better!!! IF it covers the med, I'm good to go.
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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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Does anyone know how the Tigecycline deals with the L form? Also how long are you folks on Tigecycline supposed to stay on it?
Am I correct in understanding that it essentially prevents the ketes from going into cyst form? What about cysts that are already there, does it bust them?
Posts: 3528 | From US | Registered: Apr 2007
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