posted
hey guys as i have posted the past few days this stuff sent me for a loop
so i backed off this is day 4 with no tygacl and my vision is still it's blurriest with holes in it.
the brain fog has let up a little but the vision proccesing of takimg it all in is still off
i was hopping to stop the med and come out of this herx and start taking it again slow.
but even off the tygacil now 4 days i have not lost the stuff that started 5 days into it
and as of today i now have a nasty headache and fatige to add to it.
so i'm a little bothered by this if you guys could give some input as to why i'm not recovering back to my pre tygacil baseline
and why the new symptoms?
and has this happened to any of you
so what do you think i should do?
stay off the tygacil and give it more time to settle down or should i go back on it and see what happens.
just to let you know i have been detoxing like mad tons of lemon water and milk thisel all day and taurine and magnesium, charcoal and salt baths at night
thanks for the input guys
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
don't know what to say...I didn't do any of the detox stuff you're doing except probiotics. I did stay in bed ALOT the first week though.
Does your llmd say to try it 1/2 dose of once a day if restarting it?
So sorry you are not tolerating it.
good luck
Posts: 2675 | From ct, usa | Registered: Jan 2004
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
What does your doctor think about your reaction?
I've not missed more than a dose or two since I started taking Tygacil. I guess I wouldn't really know what to expect if I did stop taking it for a couple days.
Maybe you were herxing and now that you've stopped taking the medication the infections are flaring? That's the only reason I can think why you'd be feeling worse now.
Posts: 5237 | From here | Registered: Nov 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
hey scott Melissa here. do you know what the half life of the drug is?
hope you feel better
Posts: 3905 | From USA | Registered: May 2007
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about last night i started to feel better and i saw my doc today
he wants me to start it back up 1 dose today and wait a day and see what happens
Melissa i don't the half life but i don't think it's long
i think it just really broke up a bunch of biofilm and killed it i hope.
and i had just to much lyme war going on in my brain
my vision prossesing is better but still a bit kookey.
i am in fusing now so pease say a prayer that it makes stuff better and not worse
thanks Scott
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hugs Scott I'm praying for you.
Posts: 5237 | From here | Registered: Nov 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Can you take the cholestyramine with the T?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
i don't know ? can i? i have some do you think that might help?
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I know several who have done this and no one has escaped getting their butts kicked!
Posts: 3528 | From US | Registered: Apr 2007
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posted
I am on tigacyl too. I went on it all of Dec 7 days a week but only at 50mgs. After the month I quit. I literally slept the entire month away. I had the most bizarre reactions, like bright red cheeks and swollen knee, and extreme joint pain and nausea. I thought like Rocephin (which I felt GREAT on) that after a few days I'd come out of it and be well.
That was NOT the case. My LLMD told me that it stays in your system for up to a month. And she was right, about a month after I stopped ALL abx I started to feel A LOT better. In fact so much better that I was able to go to Taheo and ski. Granted I only skied for 2 hours and I was pretty light headed but none the less I was able to do it.
I decided to have another go at it and I did it 3 days a week for March and 4 days of rocephin on the other days and this month I am doing 5 days of rocephin with flagyl and 2 days of tiger.
My symptoms of extreme nausea never went away and it actually got harder for me to tolerate the drug the longer I stayed on it both times. My brain is also very foggy and I have a hard time understand simple directions and also find myself getting lost to places I've been many times. My vision also blurs but I do expect that after being off this for 1 month that I will see even more improvement.
I just stopped abx for 10 days to see how I was doing. My brain is definitely more clear but it seems like every time I stop abx I get a cold/virus. This is concerning to me, but I guess something that is on the back burner now.
I restarted yesterday with Rocephin (for the next 5 days with flagyl) and boy is it already kicking my ***. I did my infusion last night and went to bed at 11. I did not wake up until 2pm and I felt miserable. I had to work or else I would have kept sleeping. I also find that pulsing so WAY harder than just the same meds straight. I will add in the flagyl tomorrow (still sick so I don't want to push too hard).
Good luck-let me know how it all works out-I'm very curious to know!
thx smiles
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I'll just chime in as support and say it is a butt kickin' Lyme kickin' drug, tigecycline is.
I'm on week 10 (not counting a 1 week break). I can tolerate the nausea lately (knock on wood), but my liver hates hates hates it. I'm taking 66 mg/day and no other abx. I am doing liver support (milk thistle, NAC, lots of water).
I'm willing to stick with this gun as long as I can. I can touch my legs now and they feel *almost* normal -- I have a lot of nerve damage on my legs.
One day and blood test at a time....
I work full time and afternoons are tough -- nausea and fatigue hit hard then.
Good luck Smiles and Scott.
I read it has a very long half-life, something like 40-50 hours?
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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posted
Fordace- no promises with any drug-but I did rocephin for 18 months and I had great results. Problem is that insurance cut me off. So I had to pay out of pocket after month 2.
Tiger seems to have helped me tremendously with cognitive and nerve pain, but make no mistake that whatever your problems are tiger will exasterabate those symptoms and you feel like your digressing. Nausea has been one of my symptoms from the beginning so I think that is perhaps why I feel so much sicker then the rest of you. I vomited everything I ate for 8 months before getting diagnosed, so when I say this stuff makes me nauseous I mean it's like death nausea. i also spent about 6 months in physical therapy for my right knee and my knee swells every infusion.
I don't want anyone to go on this drug thinking it's kinda hard. You really need to mentally prepare yourself because it really is brutal.
Good luck!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Allie - How were you able to work? Did you have to get a picc line and wear it while on the job?
I'm thinking about starting Tygecycline but I'm afraid of having the picc line around the office.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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