posted
How much are you taking? Makes me think that c.dif test was a false negative!!
Maybe you won't herx until the 4th day, like so often happens??
Thank goodness it seems to be working!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
When i was taking 500 mgs 2 x per day I was fine for the first few days.
Everyone is different so maybe you can tolerate things better. That would be a good thing!
Posts: 1761 | From USA | Registered: May 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm taking 500 mg 3 times per day.
hopefull it will help some of the more severe lyme symptoms.
only thing i've noticed is that i'm really sleep and tired.
i don't understand this "false negative" business. what does that mean?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Could be that the Lyme isn't in the cyst form...could be that your body is concentrating on the c. diff and that's all right now...could be that you just don't herx bad from Flagyl...could be that you don't have Lyme (I don't remember if you've had testing and a clear tick exposure)
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I think the Brorsons showed that (in vitro) lyme cysts can take two weeks to start to be affected by flagyl.
Our doc says watch out for the herx at week two with flagyl/tini...........this doesn't always hold true but often it does.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Maybe you just don't have a high cyst load?
Watch out for week 2...it hit me like a freight train.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I too started Flagyl this week. Actually started on Wednesday with a slow ramp up.
Today I'm up to 500 mg twice a day. Tomorrow I peak out at 500 mg three times a day.
We can be flagyl buddies..
I have noticed being very tired and sleepy on flagyl. As far as a herx reaction, I feel more neuropathy than anything. Zaps and cool/hot feelings on the surface of my neck, my inner thigh, and burning in my feet.
I'm also feeling a bit more 'out of it' than usual. I seem to be off in my own world most of the time. I hate that!
Side effects are showing up as an unusual taste in my mouth and what others might describe as a metallic taste... I think it feels more like increased saliva. Oh.. and my intestines hate me right now. Lots of noises and gas. (nice I know)
Hang in there!
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hey visual, great, i need a "companion" right now.
i am just exhausted. also my entire abdominal cavity just stays in 8-9 level pain. it's keeping me awake at night.
so far i've had no reaction to the flagyl at all. yep, have noticed bad taste in mouth, night sweats (which could be the c. difficile).
i had a positive test and em rash for lyme, so i've got it. i think i've had it about 20 years or so.
this sucks,tho.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I don't know why Flagyl makes you feel sooooo sleepy and tired..
For you, it might be a combo of not sleeping well due to pain and also the meds.
I have slept fine for the past week, and I'm struggling just to keep my eyes open to type this message.
So it's more than your lack of sleep.. the flagyl is zapping your energy.
How long are you going to stay on that dose? I'm only on for 14 days then we stop and see how I react.
Weeeeee... isn't this fun?
They say Lyme won't kill you... but it sure feels like it is.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Randi, for me sleepiness was my bodies main way of Herxing!!! On IV Rocephin, I slept 22 hours a day most days- was UNABLE not to sleep- was just SOOOOOOO sleeepy sleeeepy-
I've heard from a few others out there who have had this too- not a common way of herxing but not unheard of either-
Bestest wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm on 500 mg 3 times a day for 10 days.
if i could stay awake, i might make it.
the gastro wanted to do a colonscopy right off the bat, but i said no, let's try the flagyl first. he agreed but said if the flagyl doesn't work, then i should have another one. i had one in 2006 but that was before all this. that one was normal.
my poop and blood results are due back today. hope everything is ok. the gastro was worried about my potassium levels tho. he said with c. difficile there is a big risk of severe dehydration and to watch your, ummm, something levels.
so still crossing my fingers.
oh, one good thing. since we're all anal retentive...LOL....i had a good bm this movement. soft but formed....hopefully this means something.
never thought i would be a toliet troll....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Are you bowel movements still more normal? If yes, then the Flagyl is doing something. Maybe not as much or as fast as you expected, but something.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hey guys, am doing somewhat better. i am only having one sort of formed stool, kind of mushy, in the morning, and then more watery at least 2-3 times after that.
it's the severe abdominal pain at night that wakes me up that has me so concerned.
somebody told me that ibs does not wake you up at night.
but i'm scheduled to have the colonscopy this tuesday.
i told them i can't drink the go-lytly as i throw it up. the nurse said that they can't give a pill form of preparation as studies have now shown that they cause kidney failure -- egads!!!
she said there is a new prep that you take only twice, lemon flavored, and it's not supposed to be that bad.
hopefully i can keep it down.
uh, i dread this, i really do.
but at least i think the flagyl is helping the lyme symptoms, but man, the headaches are the pits!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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