I am new to the site. I have had lyme for the past 12 years and I have been in treatment for the past 6 years. Two years ago I spent 18 months on various IV antibiotics with very little success. About two weeks ago I had a new PICC line inserted and started a new treatment. I am now on Tigecycline. The treatment has been incredibly hard on me and I am very discouraged. I was wondering if anyone else has been on IV Tigecycline long enough to see results. Fingers crossed for good news!!
Thanks
Posts: 5 | From south carolina | Registered: Feb 2010
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
did Tigecyl for 4 months. Will do it in a heartbeat if I relapse.
Been off abxs since April 2009. Prior 17yrs told MS found out Lyme in 2003. Did 4 yrs various orals before Tigecyl.
IV Rocephen did nothing but give me the sludge gallstones.
Stick Tigecyl out. It gets easier. I didn't uses anti-nausea med. (llmd didn't prescribe any)
1st month crackers & ginger-ale were my best friends. Then the nausea only came periodically.
By the 3rd month totally normal stomach. Only hassle was the time it took to infuse.
Good luck May you get great results too.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I've only been on Tygacil about 9wks. So far, it has been extremely hard to tolerate and way too expensive.
But that being said, I have started to notice improvements in my cognitive function. I'm hopeful that I'll start to see improvements in other areas soon. I have a lot of neurological problems so maybe these things take more time than others.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
I was going to post an update today on my husband's Tigecycline experience anyway so--here is some encouragement!
He has been on it for about 3 1/2 months. Prior to this he was on oral abx for 4 yrs with some, but not great,improvement. Like dmc, he is MS dx'd, so mostly all neuro symptoms with white matter lesions on brain and spine.
He is doing very,very well......... all symptoms are greatly improved. He reports feeling about 80-85% recovered.
I agree the biggest road blocks of Tigecycline are the side effects and the cost. My husband had nausea in the beginning, was able to power through it. When he added in NAC the nausea was almost intolerable for a while, and he lost a considerable amount of weight (without being overweight to begin with). When he dropped the NAC dosage back the nausea went away completely.
Other supplements are: Lumbrokinase, Vit.C (with the NAC) Magnesium, Lecithin, Methylcobalamin (B-12).
Right now the end date of treatment is March 1st. We'll see, and of course, I would like to see him on it as long as possible. MRI is sched. for Tues., and although we are always cautious in getting out hopes up for substantial MRI improvement, It would be great to see some. I'll let you guys know the results.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
| IP: Logged |
posted
Thanks everyone for the feedback! I have one concern. It seems like 4 months is the norm for this but my doctor led me to believe that a month could do it. I have an appt. this week and I am pretty sure she will ask me to continue for another 2-4 weeks. It sounds like that might not be enough. I am a high school senior and I am struggling to finish out the year on time. I know if I stay on this abx much longer it will make it incredibly difficult to accomplish everything. Is 6 weeks enough???
Posts: 5 | From south carolina | Registered: Feb 2010
| IP: Logged |
posted
I did tiger for 30 days. I have been treating for 5 years. Been on heavy orals and also did 18 months of IV rocephin back in 2006. I relapsed in 2009 and went back on IV in Nov. I did 30 days of Rocephin and Levaquin. Then I did Tiger.
I could only tolerate it for 4 weeks before I said I QUIT! So to all of you that are sticking with it for longer, you deserve an award of some kind because this stuff is sooooo tough!
In Dec before Tiger my cd57 was 28 and my c4a was 34,000. In January my CD 57 was 60 and C4a was 8500 normal for these is cd57 150-200 and c4a 2800. So I was not normal, but I was MUCH improved and my level of functioning is MUCH better. My LLMD says that the tiger continues to work up to a month after you stop treatment.
I still have my port and I am pushing to do more, since it's all been covered so far. However, she is not sure if she wants to push me. We decide on Friday, but I do feel that it has greatly helped me. I did NOT feel that way during any point of the first 6 weeks I was on/off it. However, I cannot deny that I am able to work 30 hours a week (previously zero), I have no joint pain, and my brain has slightly improved in memory.
Good luck and pm if you have additional questions.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
| IP: Logged |
posted
is it possible for you to hold off until summer break?
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
stillwaiting, are you currently able to attend school? Or are you doing an independent home study program?
This is a hard decision you have to make. It might be good to take some time to list the pros and cons. Ask your family to help because sometimes the people closest to us can see things that we don't see easily.
Have you recently been on a protocol that makes life somewhat tolerable? Something that would kinda keep you functioning without major herxes while keeping flares and symptoms at bay. (Wow, this is wishful thinking isn't it?)
If that were possible, I would say stop the Tygacil for now and go with the combo that will keep you stable so that you can enjoy the rest of your senior year.
If you have not been stable and are currently bedridden or unable to enjoy your normal activities then I'd say keep on with the Tygacil for another month or two at least to see what happens.
Will you keep us posted with what you decide to do? I truly hope that you start to feel better soon. Keep fighting, keep working hard, you have so much good life to look forward to!
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
I have been on homebound since october and it is getting harder and harder to complete all of my work. I was on somewhat of a drug holiday up until January with the exception of supplements. I don't know if putting off this treatment until summer break is even possible or if it would be a good idea. I hope to be well enough to go off to college in the fall and I figured I would need the summer to build up my strength. I talk to my doctor on Thursday and I need to just ask some hard questions I guess. The one thing I do know is that I can't let my school work go. I have worked too hard for this and I refuse to let this hold me back. I will keep you all posted and thanks for all the kind words!
Posts: 5 | From south carolina | Registered: Feb 2010
| IP: Logged |
posted
Well stupid snow kept me from the doctor today. Maybe next week I will have my answer. Still waiting I guess.
Posts: 5 | From south carolina | Registered: Feb 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic