Ceftriaxone

[Barbie4]

Hello:

I was wondering if anyone is currently or has been on a Ceftriaxone drug trial and has an comments good or bad about it.

My friend is considering it and I was hoping to give her some feedback on whether it is worth it or not, side effects, etc.

I understand that it is an antibiotic used for Lyme disease and is possibly effective in chemical recycling in the nervous system.

Thanks and hello to everyone!!:mrgreen:

Barbie :)

[liz]

Barbie -

My understanding is that it is going into Stage III trials - more participants being sought, some will get the med and others the placebo. What I remember reading was that you have to agree to have a central venous catheter placed, that there must be a caregiver in the home to supervise meds, and that there is a fair amount of travel to/from test centers involved. There's more and I'm sure ALS Center or the MDA could give you a fact sheet.

Liz

[candd]

Barbie, I noticed that you wrote this in January. I just became a member in the last two weeks. Saw the posting for ceftriaxone...I am currently in the research study out of Washington University in St. Louis. If you are still wondering drop me a line and I'll tell you everything I know.

[Beebe]

Hi Barb, Jack is taking Ceftriaxone started about a month ago. No side effects. Is Gail in a trial? I'll write more later, it's really late or early.lol Fondly, Beebe

[Omar]

Hey guys,

I have been on Ceftriaxone (ROCEPHIN) through the I.V. for 3 days in the hospitals
4g daily, 2g in the morning and 2g in the evening and right after I have been (and still)
on Vibramycin 100 mg 2 pills daily with Coenzyme and Magnesium and I will be again on Ceftriaxone right after the Vibramycin period.
So far I haven't notice any side effects, and my progression is still as it was before starting the antibiotics, a slow progression.

N.B.: I am not taking Rilutek and not planning to.

Omar

[CindyM]

Hi Omar- interesting that you don't plan of taking Rilutek. I know there are a ffew PALS who don't take it. Care to share your reasons? Cindy

[Omar]

Hey Cindy,

Well if it was really a cure or an ALS medicine I would have taken it into consideration but I feel it more like a side effects medicine than a cure. I have searched and read a lot about it and it seems that it may delay the ALS progression for few months after taking it for quite a long period. I have always had a healthy life style, I don't drink, I don't smoke and I work out regularly so as long as I am going to die anyway with or without Rilutek, I would chose to die without it. Honestly I have been on Rilutek for a month and it was also very hard for me to follow its schedule like taking it at the same time and every 12 hours so I ended up lots of time missing it. Now I feel much free without it and my neurologist also has supported me.

N.B.: I feel it more like a commercial product than a medicine.
I don't know.

Omar

[Barbie4]

Thank you for your offer of info on Ceftriaxone. Gail was considering going on a trial back in January, but I do not think she will bother doing it now, as it will require travelling to the States. Interesting that some of you are on it. I hope it works and if you have info on it of its success, please share it with us. I would love to hear a success story.

thanks and hello to all.

Barbie :)

[kman543210]

I have not been diagnosed w/ ALS (or anything yet), but I do have experience with Ceftriaxone. I started Ceftriaxone in Dec 2006 (2g/day) and had to have a PICC line put in. This is a catheter put in the arm. This might seem extreme for some, but I had a central venous catheter when I was younger for 18 months for chemotherapy. I didn't notice any side-effects, but you have to take a good probiotic and have your blood counts and other organs monitored. It's expensive too, $95 a day for me.

[KateO]

Any others want to share their experience with Cep(sp?)? I'm considering it..but, need more feedback from ALS patients currently taking it. How long does it take to put in the daily meds into the IV? Does the IV site get in the way? Is it easy to cover with clothes? Are the meds easily transportable (eg: can I easily travel with them when I take 5-6 day trips).

Thanks!

[Omar]

Hey Kate,
I had been on Ceftriaxone for a 3 days trial in the hospital, it takes minutes to put into the IV and they did it twice daily morning and evening, as for the IV it doesn't really get into the way, I even used to take it with me and have a shower and it is not that practical to dress and undress but it is not that difficult so u will get used to it. But u can also have the trial home if u don't like hospitals, u only need a nurse twice daily to put it into the IV. I have also heard of the pills but have not tried them.
take care

Omar

[ilgal]

I am not taking it yet but have all the written info and went thru screening and expect I'll start soon so I'll tell you what I know.

They are still enrolling for Stage 1 & 2. 1/3 will get placebo, other 2/3 will get 1 of 2 different doses of ceftriaxone (double blind).

Screening involves thorough health history, blood tests, physical exam, 24-hr urine collection, abdominal ultrasound, strength testing of arms and legs, vital capacity test of breathing, quality of life and functional rating questionnaires. The ultrasound revealed I had gallstones so I had to have my gall bladder removed. Then because since childhood I've been told I had penicillin allergy and that's an exclusion factor so I had allergy screening last week. No allergy, so now I have to go back and have all the other screenings re-done since over 30 days.

Once approved a central venous catheter will be inserted in the chest. My husband & I have already watched a dvd about catheter care. You do have to have an able and willing caregiver. Prepping and giving the study med twice a day looks like it will take about 30 min. each time. You can never take a bath or swim but can shower. Scoop neck clothing or anything tight would show the catheter, but I don't think it will be visible under a button up comfortable fitting blouse.

You go back once a week for the first 2 weeks after getting catheter and beginning the med, then every 4 weeks. At the 1st weekly visit you have to have 2 spinal taps (this is the only part that scares me! Say a little prayer...)

The ceftriaxone has to be kept frozen until given. They told me that if you have to be off it for a few days to travel, etc. that's okay.

Hope this helps. I'll be glad to keep you posted as I go through this if you want to know. Let me know if your friend opts to do the study. We can compare notes.

[ilgal]

Kate,
Oops! I had read the earlier post about someone's friend considering it and when replying forgot that you were considering if yourself. Sorry.

When were you dx and what are you experiencing now? I would love to compare notes if we both do the ceftriaxone. Have you considered any other trials? My husband read about the diaphram stimulation one at Cleveland Clinic and thinks I should find out about that. But it's pretty far from home and I don't know if one can participate in more than one trial.

Hope to hear back from you and good luck.

[KateO]

Thanks to you both for the responses! Hmmm..I really do need more info before I make a decision. I LOVE to swim, so I do not think I'd be willing to give that up. And, no baths? Hmmm..it's life's little pleasures that count. And, baths and swimming are two big "little" pleasures for me.


Ilgal - I am 47, diagnosed this past April. I use a walker, primary symptom is very spastic legs, clonus and foot drop on right foot. My progression has been slow. I was very active physically before this. Big skiier, mountain bike rider, runner, hiker, lake swimmer. So - if I would have to give up swimming to do the Ceft. meds I really don't think I would do it. It's about last thing I can still do physically.

I'm not involved in any other clinical trials. Thought about it and decided against it. I live in Montana. Closes hospital for ALS trials is Salt Lake City. I'm just not interested in spending the time and money to go SLC all the time. I'd rather save my money and go to Hopkins periodically. I know I'm not interested in being part of any clinical trial that involves placebo. I understand why they have to structure the trials that way - but, man oh man. Why would I want to go to the time and expense for a placebo? Nope.

I am on Riluzole. I didn't even want to do that at first. I HATE taking all the pills. I take (-10 Baclofen pills a day because I am so spastic.

Emotionally, I am doing better as time goes on. Just last week I decided to "go public" with my ALS diagnosis. It was a big step for me. But, the burden of keeping that secret was just getting to be too much for me. I am still working. My work involves a lot of travel. Of course, that's not always easy...but, I am just thrilled to be able to still do it. I know I won't always be able to travel, so am just reveling in this opportunity.

Okay. Your turn? When were you both diagnosed and what are your symptoms?

Take care - everyone,
Maureen

[catcherpride]

I started the study 3 weeks ago and no issues as of now. The Hickman cath is not much of an issue as long as you don't get it soaked. The second week all day stay in the hospital was very tiring. The 2 LP's were not that bad, but the every hour blood draws were not as much fun.

I am very lucky that my wife is a RN. The infusion is a piece of cake since she is so good at doing it. The infusion takes 22 minutes and I keep doing my normal things while it runs. My 8 year old has even administered my meds with my wife helping.

I look at it this way - if anything helps me watch my girls grow up I am doing it.

Michael

[Jamiet]

I am on Ceftriaxone (Rocephin), 2mg 2x's per day.

I don't know who said this, but i think Kman.... I get mine for $70 per day. Who are you ordering it from. I don't get the medical supplies, only the meds, saline and heparin.

next... I am on the ceft. 4 days on and 3 days off. I don't have the cathether, i have a mediport. From what i know, the mediport is the safest and best way to go if you don't have to be injected all 7 days. i do Monday thru Thursday, fri - sunday, i can do anything i want. As a matter of fact, even with the needle in, i can pretty much do what i want.

I would think a catheter is dangerous, but the docs are supposed to know whay they are doing right??lol

I am not dx with ALS, think i could have lyme, so i asked for the IV ceftriaxone, i knew it was in clinical trials and i knew it was an effective treatement for lyme. I'll kill two birds with one stone here huh.

So, in a nutshell, i find it very easy. I now, after 4 weeks do everything myself. I had home health for two days and my friend who is an RN "stuck" the needle a few times. I know do it all myself, from infusing the IV 2x's per day, to flushing, to pulling the needle out and i even put it in the mediport myself sunday night. FYI - i change the needle once per week, and i change the dressing twice per week.

I actually find it all really easy now, it takes all of 10 mintues to get the 2 gms in, that includes Saline & Heparin.

If you use this, remember the "SASH" method. Saline Antibiotics Saline Heparin.

You all know, it's funny they are finding out ceftriaxone is beneficial to ALS.....and funny enough it's the best treatement for lyme.....???? Do you think there is possibly some connection.

Anyway, please feel free to ask all the questions you want, i will help where i can.

Rgds,

Jamie

[ilgal]

Jamie,
Good thing about the clinical trial is no cost for meds, supplies, screenings, etc.

Michael,
Thanks for sharing your info. It makes me feel a little better about being able to handle it. I am having quite a bit of problems using my hands so my husband may have to do all the connections. You said you continue to do your usual stuff while the med is infusing. Can you get up and move around? I thought I'd have to sit still which would make the a.m. dose a pain as I'm trying to get ready to go to work. Please keep us posted on how it goes. The idea of getting the placebo is a bummer but at least it feels good to be doing something.

Kate,
Thanks for sharing your symptoms, etc. I can understand your not wanting to give up your pleasures of swimming and bathing. I've always been a shower gal myself, but I was sure to enjoy the hot tub when we went on a cruise last month.
I am 58 years old and still working. Symptoms started as slurred speech then right hand weakness. First dx as stroke. Dx ALS in July 07. Speech getting worse, but no problem swallowing. Rt hand and arm weak and atrophied and left is following suit but seems so strong by comparison. Fascilations in arms, tongue, lips, legs, and back from time to time, but not bad. Was feeling very good about leg strength, but in last mo. have had 4 falls and notice difficulty climbing stairs. Fri. I fell on our patio and had to get stitches in my forehead. One side of my face looks like a Halloween mask with an artistic blend of red, purple, yellow, and grey. At least tis the season! No clonus (I actually had to look up what that is) or spasticity. Occasional cramps in hand.

Overall I feel like I'm in pretty good shape so if ceftriaxone could stop this in its tracks I could live with the present me. The thought of the progression scares me as I guess it does all of us. I admire all the brave people who write on this forum and are so helpful to others in spite of what they are going through themselves. Bless you all and bless all caregivers!

Your Illinois friend

[KateO]

I too want to thank everyone for sharing their experiences and thoughts about this drug. I did have a long talk with my doctor last night about it. I've decided against it. I just absolutely love swimming, soaking in natural hot springs (we've got a few around the area) and long, long baths! If I was convinced it would definitely extend my life I'd do it. However, as we all know, the only drug they know really works is Rilutek.

There are so many different decisions to make about drugs, lifestyle choices and interventions with this difficult journey of ALS. I respect everyone's wishes to make their own decisions. I wish all of you the very best.

Kate

[Omar]

Hey Kate,
I was diagnosed in August 2006 and my symptoms were so many like slurred speech, laughing, weakness in my right hand and legs. By the way I adore swimming too, I used to swim 4 times per week and I really miss it, I haven't been swimming for a year now, but now I am planning again to swim, so I am looking for a pool around, and my 2 new speedos are ready :)
By the way Jamie, I am curious about your Ceftriaxone trial, for how long you are going to be on it? Actually I have been on Ceftriaxone for 3 days only (4 gr daily) then I stopped went home and been on Vibramycin for 2 months (2 pills daily) in order to restart afterward another Ceftriaxone trial, but then I didn't cause I left my country. So I am curious for how long your Neurologist wants you to be on it.

Thank you and take care


omar

[rocmg]

i hope yall don't mind my reviving this thread... but if any of the people who previously posted in here about taking Ceftriaxone over a year and a half ago would like to come back on and tell us how it went, i'd be appreciative...

or are they all skipping and running through the hills!? no fair to keep such a great secret!

stories of good or bad experiences appreciated.

god bless.

[ilgal]

I started the ceftriaxone trial in Nov. 07 and dropped out in Oct. 08. I definitely don't think it helped me but I'm pretty sure I was getting placebo both a.m. and p.m. Reason for my thinking that was no odor of drug. I was told by others that cef has strong urine smell. The main reason I quit was my husband had to administer it and as I was getting worse he also had to do so much more around the house and bathing and dressing me. I just really wanted to make things easier for him. Other negatives were the hassels of taking the drug and supplies when we traveled, not being able to wear certain clothing because the central line showed, the difficulty covering central line when showering, and the long drive to the research site.

[Erica]

Sorry for revivining this older thread.
My doctor mention Rocephin treatment to me, and I was wondering if anyone had any success with it.
Thank you, Cookie

[flyingcircus]

My brother-in-law is 45 and having als for 4 years. He has been told about this new treatment with CEFTRIAXONE.
He's portuguese but living in switzerland.
Can anyone told me where to find a list of clinics performing this trial treatment (anyone in europe?).

Thanks very much

[tdamess]

had to look up rocephin thought it was a different drug but it is ceftriaxone....learn something new everyday

[Momma]

I am doing the trial right now. I started Oct 13. Don't really have anything major to report. And Michael, I feel the same way. I'm game for anythng at this point. I have 5 kids and at the very least i want them to see me doing something to fight this.

Momma

[RoadKill]

Getting the Hickman Wednesday, first dose of whatever on Thursday. I figure if the ceftriaxone doesn't work or if I get the placebo, the Hickman will make it easier for Dr. Kevorkian.

[Momma]

That was funny...thanks for the laugh.
How are doing? I have been doing it a little over a month.
Not really sure if it's helping or not.

[RoadKill]

I am getting the placebo. I am not sure what to do about this.

<sigh>

[hopingforcure]

How did you know it is the placebo? Maybe the smell? I hate that anyone gets the placebo.

[BarryG]

There is absolutely no point in giving someone a placebo if they know that it is a placebo. The whole point of a placebo is to determine if any change or improvement is because of the drug or if it is just the belief that you are getting the drug.

[hopingforcure]

Barry, that is exactly what I was trying to say. I agree completely...

[RoadKill]

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."

[serenade]

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

[RoadKill]

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...

[BarryG]

RoadKill, not part of this thread topic but great avatar! I am going out tomorrow to look for his cousin, season ends here on Monday so not much time left.

[RoadKill]

RoadKill, not part of this thread topic but great avatar! I am going out tomorrow to look for his cousin, season ends here on Monday so not much time left.

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]

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.

[serenade]

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]

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

[serenade]

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!

[RoadKill]

...but really how are you sure if you are getting the placebo

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.

[serenade]

I opened the capsual! Powder looks like pulverized salt very white in color. Could not taste anything because I already have a sour taste in my saliva.

[RoadKill]

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]

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?

[RoadKill]

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.

[serenade]

I forgot the ursodiol causes weakness, were you tired before the trial? Provigal may help try to take it with BOOST I use it and so does my 88 yr old mom, we both have put on weight drinking it. A little more expensive but really does help, I just shoot into my peg am and pm. I can relate to having to work a while longer, just take it one day at a time you will make it. Take care it will all work out PMA.

[GinaM]

Hi Everyone,

I am new to this forum and my husband has ALS. He is in the Ceftriaxone trial and he began in October. We are both convinced he is on the placebo because he has not seen any improvement, effects, reactions, or slowing of the disease. I have read all of your posts about a possible taste to the drugs but I am refraining from testing anything out in order to save some hope for both of us for this trial. I feel the trial is time consuming and we too have tied ourselves to the house which can be frustrating (esp over the holidays). I hope others are on the drug and see some improvement. Please continue to post your results. I am curious to know if it is helping (even a little).

[serenade]

Hi Gina,
Just because your hubby does not show an effect yet does not mean that he has the placebo. Everyone tolerates a medication differently and everyone has a different opinion of the med having an odor or not, and if it has a taste or not. I have been on it 28 days and have not noticed any changes for the better, but I also do not expect anything to change for a long time. The als has done it's damage to me over the last year I do not expect the ceftriaxone to really show any changes for at least 6 months. So please keep a positive attitude and hang in there. We bought a little plastic basket and take the med and the pump and ect.... with us whenever we go anywhere I do not stay home because I am on the med we adapt to the situation.

Judy

[GinaM]

Hi Judy, thanks for the words of encouragement. We are trying to stay positive but it is difficult when you see a consistent decline in function. When I say we are tied to home, I mainly mean for distance traveling. Our families are several states away and we tried to travel with it over Thanksgiving but in the course of the drive some of the medicine began to thaw and didn't refreeze well. We are definitely going to stay with it and hope for some change in the current progression.

[serenade]

Gina,
Talk to whoever is in charge of your study, you are permitted to miss a dose or be off it for a week if needed. All you need to do is use the saline once a day till you go back on the med. The ceftriaxone can thaw but needs to be kept in a frig or on a cold pack. I think the problem is when it sits out in room temp for to long that it becomes unusable, In the info they gave you it states how long it can be out at room temp before it turns bad. I just can't remember right now.
Have a wonderful holiday and hang in there!
Judy

[Kenm3344]

Hello All,

I am new to this form and just started the Ceftriaxone trial on 12/15/2009 the same day my catheter was installed. The catheter site is still sore but getting better So far no issues or reaction to the Ceft, ursodiol or placebos. I understand the need to the placebo however it has been driving me mad not knowing. I can not afford the meds on my own and of course the insurance will not pay for a unapproved treatment so the trial is my only hope for some kind of treatment . I would hate to find out after one year that I have on the placbo. I am fixated on if I have the placebo or not and am trying to work through this issue and telling myself this trial may help someone in the future.

This is what I know: This study uses a placebo. The placebo looks like the study drug, but contains no ceftriaxone. The placebo used for this study is a low dose of pediatric multi-vitamin in solution. If you are selected to receive ceftriaxone as your study drug, you will also receive a medication (ursodiol) in the form of a tablet that you will take two times a day. This medication is being used to lower the risk of developing gallbladder problems, which is an expected side effect of ceftriaxone. If you are selected to receive placebo study drug, you will receive a placebo medication (instead of ursodiol) in the form of a tablet that you will take two times a day. This placebo medication will look like ursodiol, but will contain no active drug.

[Big Mike]

It's interesting that they are using Ursadiol to help break up gallstones, as it currently undergoing testing itself as a potential ALS therapeutic treatment.

[serenade]

Well that doubles my chance's for something positive to happen!
Merry Christmas!!!

[searocks]

Hi all. This is my first post here. I too am in the Ceftriaxone trail. I started on December 8, 2009. When I went back for my 1 month study visit, I had the planned sonogram of my gall bladder and stones have developed. I have also developed diarrhea. The clinic had me go off the study drug for the next 30 days while staying on the pill(really a gel cap) in hopes of dissolving the stones. I'm assuming I am receiving the real thing instead of placebo. For now, I just flush the catheter twice daily and take the gel cap twice daily. After a few days of not being on the drug, my diarrhea has cleared up.
Some comments on my drugs are that there is a cat urine type of odor in the ceftriaxone and the Ursodiol does not dissolve in water. I tried it. I break open the gel cap and mix it with yogurt since I have difficulty swallowing the capsule.
My only concern is gall stones. They can be very bad for you. I have enough issues without worrying about gall stones.
We will weigh the pros and cons after 30 days and decide on continuing the trial or not. I keep hearing rumbling of other interesting trials coming up soon. Perhaps something else will be better for me.

Zane

[halfin]

Thanks for the information, Zane. I am closest to UCLA as a study center for this trial, and I called them Tuesday to ask about it. They said they have not started yet at this location, there is still some paperwork to finish, but they expect to receive approval in a week or two. I am hoping to participate and will try to find out more when I visit UCLA next week for my 3 month ALS clinic visit.

[range]

Hello there I am new on this forum and living in the Netherlands (Europe) i have since last november ALS it's a big disaster if they told you . in Europe there are not so many investigations and trials as in the United States. Only in Belgium on the university of Leuven they do trails white Talampanel and VEGF.
I read on those Belgium forums a lot about ceftriaxone and i will started white my neurology in approximately 2 weeks from now. So no placebo for me and been the first person how do do's trial because i have like any people how has ALS nothing to lose .
I hope ceftriaxone will stopped for a while and give me more time .I has it in my leaks so walk is almost not possible .
May be at the end of this year the medicine Talampanel is coming on the market.
My insurance will pay on the Doctor advice the ceftriaxone trial. because the rules are different than in your country
I let you know the results i a few weeks.
Be optimistic there is alway's hope for everone

[joelc]

Welcome to the forum. I hope you have success with your trial.

[serenade]

Range,

Good luck with your ceftriaxone adventure. If you have questions please ask.

Judy

[range]

Range,

Good luck with your ceftriaxone adventure. If you have questions please ask.

Judy
Hello Judy my name is Jan and i see your message it;s know almost 22.30 in the evening here in Holland and off-course i have some questions. First how high is the dose the will give the people how been doing the trials . I ask you that because we now nothing here in the clinics even the university hospitals can nobody tell or will not tell it about ceftriaxone.I found it on the Belgium site and looks the messages on those als forums. Some people did make some progress and it's feels that it will stopped. Dr jeffery Rosenfeld from Fresno will started a trail but for me too far.So i will do it on my one risk and my neurology will give me the support and keep me under his control. But even him he don't know the daily dose i see 2mg in the morning and 2 mg in the evening.
This week i hope too find the right dose and on 17 march i will see my neurology and then i started .I get 2 times a day rilutek and take 3 times a day green tea extract.
I been 59 years old and i quest for the all the one off us is hard i can only walk behind a rollator.
I stop and wish you a good day .

[brooksea]

Good luck to you Jan. i have no information, but wish you good luck! God help us all!

[serenade]

Range,
You must have an ultrasound of your kidneys and gallbladder before starting ceftriaxone, to rule out having stones or other problems. Also look up side effects for ceftriaxone and ursodiol you must know what reactions to look for.

I do the following:
2g in 20ml sterile water ceftriaxone(printed on the syringe) AM & PM by IV Hickman cath
300 mg ursodiol AM & PM
This must be monitored by blood work, urine screenings and ultrasound of gallbladder and kidneys.

I go on thursday for my 4 month check up to see how well I am doing hope to have a decent report.
I have a son who lives in Prague Czech Republic when I went to visit I went to Amsterdam it was an interesting area and beautiful area.
Best of luck with your journey

[range]

Good morning Judy and everybody on this forum i will tell my neurology all those things that you write too me.
I quest there are approximately 600 patients in Holland and i don't know how much in Europe only in Belgium they do a lot for us people.
It's a same that here i live in the North off Holland the university hospital does-end know the ceftriaxone therapy i think it's cost to much money for them.
I know that i been the first person how will do it and be happy to get the permission for my neurology and JP.
For the rest well we have here a local blood laboratories and they come at my house so thats not a problem.
One question how did you feeling your self know during you used ceftriaxone do you see progress in the positive way??
I can still drive my car and the distance too the hospital is 25 kilometer my wife didn't have a drivers license but see is starting a course for those license.
Were we live is a small village and no supermarket so when see need something i drive here too the supermarket 10 kilometer from our house and wait in the car no problem at al.
I been often in the United States for my work been 30 years Chief Engineer on Container ships and mostly we sailing too the port of Houston and Mobile Texas .
Some times we did go to Los Angeles
The world were my work and i always love my job been white pension since 2001 and did has planes too immigrate too Indonesia my wife come from there but know its better too stay in Holland.
If i can stopped the ALS in the near future than we will going i hope so.
Have a nice day everyone and do not lost the hope
Jan

[serenade]

Hi Jan,
I left a visitor message for you. :)

[Ratman55]

Dear Judy,
I'm pretty sure this has already been said, but I wanted to personally thank you for your courage and willingness to share your experiences with us. I've been following this research very closely, and it obviously has its share of risks and emotional challenges. The word "valiant" comes to mind. This goes for anyone else as well, who has accepted the risks for the benefit of Pals everywhere.
--JK

[serenade]

Aww Ratman how sweet of you to recognize me and the other in the ceftriaxone trial:)

Valiant I am not but a problem solver and solution finder I am! If anything can be learned from my participation in the trial it is far more important to me than the risks associated with the medications. My goal is to make it one year on the ceftriaxone, that would give a grhe 4 month period.eat baseline from my dx one year ago and beginning the trial 4 months ago to figure out rate of progression with and without the medication. In april I will have a full range of test done at the clinic, I plan to compare last years test, 6 month tests and one year tests. I also plan to check out all my test from the trial over the 4 month period and compare scores from the 1st day till the 4 month period. I will post the the out come if they will give me the information.

Interesting that it is my youngest son who will be 30 this year was a little ratman himself 15 years ago he and a friend took care of the rats and mice that were shipped to medical research facilities all over PA. It was a dirty job but he loved it.

Take care Judy and Thank you!