hopingforcure
Very helpful member
- Joined
- Feb 14, 2008
- Messages
- 1,425
- Diagnosis
- 09/2007
- Country
- US
- State
- USA
- City
- Any
Barry, that is exactly what I was trying to say. I agree completely...
Ceftriaxone
- Thread starter Barbie4
- Start date
- Status
RoadKill
Active member
- Joined
- Aug 19, 2009
- Messages
- 91
- Reason
- PALS
- Diagnosis
- 05/2009
- Country
- US
- State
- MD
- City
- Suburbs
Smell, taste.
I thought, beforehand, I could do my part for science if I got the placebo. I overestimated my altruism and underestimated my desire to live, or if not live, die trying.
I don't know what to do. I am in a bit of a mental holding pattern. I am so tired.
A friend of mine said, "They don't care about you. They [the study doc +clinic] get paid per patient. You are an income source for them."
I thought, beforehand, I could do my part for science if I got the placebo. I overestimated my altruism and underestimated my desire to live, or if not live, die trying.
I don't know what to do. I am in a bit of a mental holding pattern. I am so tired.
A friend of mine said, "They don't care about you. They [the study doc +clinic] get paid per patient. You are an income source for them."
serenade
Distinguished member
- Joined
- May 3, 2009
- Messages
- 285
- Reason
- PALS
- Diagnosis
- 04/2009
- Country
- US
- State
- pa
- City
- Zelienople
Road kill,
I am on the ceftriaxone don't be to quick to think that you have the placebo. The ceftriaxone does not have a smell that you can detect, and there is no taste to it!
Judy
I am on the ceftriaxone don't be to quick to think that you have the placebo. The ceftriaxone does not have a smell that you can detect, and there is no taste to it!
Judy
RoadKill
Active member
- Joined
- Aug 19, 2009
- Messages
- 91
- Reason
- PALS
- Diagnosis
- 05/2009
- Country
- US
- State
- MD
- City
- Suburbs
One-third of all participants are getting the placebo.
My observations:
Ursodiol has a bitter taste and is insoluble in water. The white powdery matter in the pills I have taste like corn starch and the white powdery matter dissolves readily in water.
Ceftriaxone tastes nasty. The contents of the syringes tastes exactly like saline solution.
Two biological sciences professionals (not a part of the study) agree with me. They have the experience to know.
I hope we are all wrong... but, one-third get corn starch and saline...
My observations:
Ursodiol has a bitter taste and is insoluble in water. The white powdery matter in the pills I have taste like corn starch and the white powdery matter dissolves readily in water.
Ceftriaxone tastes nasty. The contents of the syringes tastes exactly like saline solution.
Two biological sciences professionals (not a part of the study) agree with me. They have the experience to know.
I hope we are all wrong... but, one-third get corn starch and saline...
RoadKill
Active member
- Joined
- Aug 19, 2009
- Messages
- 91
- Reason
- PALS
- Diagnosis
- 05/2009
- Country
- US
- State
- MD
- City
- Suburbs
Barry, I don't know enough about hunting to tell you that I hope you bag a buck or doe. Here, I see mutant, inbreed deer by the side of the road daily. Sometimes they aren't quite dead and the cops have to shoot them. (An acquaintance of mine is a cop.)
Sometimes I think, when I die I am going to look back at all of this and wonder what the heck it was all about. I hope some things can get clarified then because lately not a lot makes sense.
BarryG
Extremely helpful member
- Joined
- Nov 19, 2008
- Messages
- 3,000
- Diagnosis
- 02/2008
- Country
- CA
- State
- Alberta
- City
- Hinton
So THAT'S the roadkill! Either a buck or a doe or both will suit me, we have a lot of whitetails around here so I have a tag for both. They are a menace on the roads, a month ago I got back from a day driving around in the bush looking for one (can't walk much now) and almost ran over one in my driveway. I didn't think that either my wife or the neighbours (to say nothing of the police) would be too happy about me shooting that one so he got away.
To get back to the real topic, I hope that whatever happens you get some clarification and that you are helped by whatever they end up giving you.
To get back to the real topic, I hope that whatever happens you get some clarification and that you are helped by whatever they end up giving you.
serenade
Distinguished member
- Joined
- May 3, 2009
- Messages
- 285
- Reason
- PALS
- Diagnosis
- 04/2009
- Country
- US
- State
- pa
- City
- Zelienople
Hmmm well I have ursodiol 300 mg 2x a day it is a 24/7 sour taste in my mouth. I tasted the ceftriaxone after my dose tonight and it does have a slight medicine taste it is nothing like saline. The placebo for ceftriaxone is a childs multivitamin.
Momma
Member
- Joined
- May 12, 2009
- Messages
- 28
- Reason
- Learn about ALS
- Diagnosis
- 05/2009
- Country
- US
- State
- CA
- City
- Mountain View
Freakin stop if you know....this is a pain in the ass...but really how are you sure if you are getting the placebo? I want to know if I am also. I have 5 kids and have tied myself to our house to make sure I stay on this stupid scheudle for me.
Momma
Momma
serenade
Distinguished member
- Joined
- May 3, 2009
- Messages
- 285
- Reason
- PALS
- Diagnosis
- 04/2009
- Country
- US
- State
- pa
- City
- Zelienople
Momma,
Stay positive! Had I not had a a reaction to the ursodiol I would have never known if it was the placebo or the ceftriaxone. In the beginning I thought I had the placebo, you may have the real deal please stick with it!
Stay positive! Had I not had a a reaction to the ursodiol I would have never known if it was the placebo or the ceftriaxone. In the beginning I thought I had the placebo, you may have the real deal please stick with it!
RoadKill
Active member
- Joined
- Aug 19, 2009
- Messages
- 91
- Reason
- PALS
- Diagnosis
- 05/2009
- Country
- US
- State
- MD
- City
- Suburbs
See my previous post above.
Open up one of the pills and taste the stuff and tell me what yours tastes like.
:neutral:
It's 1 PM and I'm still in my pajamas. A year ago, I'd be kayaking or rock climbing from sun up 'til sun down.
RoadKill
Active member
- Joined
- Aug 19, 2009
- Messages
- 91
- Reason
- PALS
- Diagnosis
- 05/2009
- Country
- US
- State
- MD
- City
- Suburbs
Hi Serenade, You may have posted this elsewhere, but how do you know you are NOT getting the placebo? I'm sorry if you already posted that. I am incredibly tired all the time.
:?:
:?:
serenade
Distinguished member
- Joined
- May 3, 2009
- Messages
- 285
- Reason
- PALS
- Diagnosis
- 04/2009
- Country
- US
- State
- pa
- City
- Zelienople
Roadkill
I started the trial 10 days ago. The first two days were ok and no problem. I wear a transderm scop patch and it was irritating my skin so I took it off. The next day I took my morning doses of ceftriaxone and ursodiol everything went down hill from there. Extreme nausea and vomiting all day and the next day. Trial doctor stopped all my meds thinking I was having an allergic reaction. They reviewed my case a few days later. Ended up that I had a reaction to the ursodiol and my transderm patch kept the side effects under control. So now I keep the patch on and I am ok with all the meds. I know I am not getting the placebo because I have the real ursodiol and you would not get that without the real ceftriaxone. Also my visiting nurse said I had the real medications. However had I not gotten ill from the ursodiol I would not have known. You may very well have the real ceftriaxone so stick with it. I use to get really tired all the time and could not make it through the day without a nap. I boosted my intake of vitamins and now I do not need a daily nap. How long have you been on the ceftriaxone?
I started the trial 10 days ago. The first two days were ok and no problem. I wear a transderm scop patch and it was irritating my skin so I took it off. The next day I took my morning doses of ceftriaxone and ursodiol everything went down hill from there. Extreme nausea and vomiting all day and the next day. Trial doctor stopped all my meds thinking I was having an allergic reaction. They reviewed my case a few days later. Ended up that I had a reaction to the ursodiol and my transderm patch kept the side effects under control. So now I keep the patch on and I am ok with all the meds. I know I am not getting the placebo because I have the real ursodiol and you would not get that without the real ceftriaxone. Also my visiting nurse said I had the real medications. However had I not gotten ill from the ursodiol I would not have known. You may very well have the real ceftriaxone so stick with it. I use to get really tired all the time and could not make it through the day without a nap. I boosted my intake of vitamins and now I do not need a daily nap. How long have you been on the ceftriaxone?
RoadKill
Active member
- Joined
- Aug 19, 2009
- Messages
- 91
- Reason
- PALS
- Diagnosis
- 05/2009
- Country
- US
- State
- MD
- City
- Suburbs
Thanks.
I will try to keep it up.
Right now, fatigue is really kicking my butt. I need to work until June to qualify for a disability pension. Provigal is sort of looking good but I have lost 30# in the past year so I am worried about losing more if I go on Provigal. All this is off topic as far as this thread... a tangent.
I have been on whatever it is for two weeks.
I will try to keep it up.
Right now, fatigue is really kicking my butt. I need to work until June to qualify for a disability pension. Provigal is sort of looking good but I have lost 30# in the past year so I am worried about losing more if I go on Provigal. All this is off topic as far as this thread... a tangent.
I have been on whatever it is for two weeks.
Last edited:
- Status
