Re: mitoldies:Adrienne/Celia/ question re Carnicore

[Guest guest]

Celia,

Its carnitor the dr put you on. I know it can cause stomach upset but ive

know it to help some with dysmotility also. ive been put on l-carnitiene

which is the type you can get in stores, but was taken off of it by my new

neuro till we do all the tests and see if i need the rx form. CoQ10 is also

good, i was on that for awhile and it seemed to help alot with energy but

again dr took me off of it cuz he wants to see how i am w/o most my meds and

all. You are right about how the symptoms wax and wan with

gastroparesis/dysmotility so tests cant always be accurate. I am going to try

domperidone i think once i get my other meds back in order after going to the

hospital. I take trazadone sometimes but didnt like how it made me feel, but

maybe ill try a low dose of it with my pain meds and see how i do with that.

About the antibiotics, i cant take too many of them because of sulfa allergy

(bactrim is a sulfa med) and also i seem to have alot of probs with many

other antibiotics. but i havent tried neomiacin, might be worth looking into

that one. I have the dialations too of my esophogus and pylorus every few

months. it does help for a bit, but not too long so ive stopped getting them

done as much. Anyways, you are right about energy for xmas- i havent even

started xmas shopping and hope to get home from the hospital in time to do

so, it is stressful and harder to keep up on the gp site and even this one.

im gonna go on 'no mail' starting this weekend and dont know when ill get

back to this group. my neuro said id be in the hospital at least 4-5 days and

possibly more. anyways, im just glad im in a crash basically and they will be

able to see me at my worse. i hope that you are getting enough rest and all.

youre in my thoughts.

take care,

adrienne

[Guest guest]

Hi,

I am glad to hear that you had a good visit with your Neuro. Some pointers on the Carnitor...it can/does cause some people stomach upset and nausea. And I have found that it needs some type of Fat to work in your system. Most people on Carnitor that I know eat something high in fat with each dose of Carnitor. Did your Neuro give you a prescription for the Carnitor or are you going to buy it over the counter? The prescription one is much much better. I eat cinnamon crackers with cream cheese on top when I take my Carnitor and it really helps with the stomach upset and GI problems. and I just recently found cheesecake flavored cream cheese and it is awesome.Try it!!

About the CoQ10...it is also a good supplement.Alot of people buy it from Tishcon via the internet...I can't remember the website address but I am sure that someone will jump in and let you know. I tried the OTC (over the counter) ones and they didn't work for me at all. I gave up until someone suggested that I try the ones from Epic and there was a big difference.

And you are so right to take one supplement at a time. This way you will know if you have any side effects from that supplement. If you take more than one at a time you won't know which one is giving you a problem if there is one. Please start out slow and work your way up. And give it some time...with some people it takes a few weeks to a month to feel any results, so hang in there!!!

You mentioned possibly using Bactrim for your bacteria overgrowth...just a bit of info for you...if you are allergic or have any side effects from any Sulfur drugs than you won't be able to use Bactrim. I found out the hard way. Actually I never knew I was allergic to sulfur drugs until I went on Bactrim for a very bad UTI. Just want you to know.

Good luck with the supplements and let us know how you do.

Hugs,

Ann-Marie

:Adrienne/Celia/ question re Carnicore

> Dear Adrienne, Thanks for the nice long post. I had a good visit at > the neuro and he is going to try me on Carnicor (sp?) He alos said I > could try Co Ensyme Q but I thought I would try the one first and then > add the other. Does anyone have any advice on this and also the timing > of taking the Carnicor. I am really hoping it will help with the > energy, muscle issues and MAYBE have some effecton my gastroparesis. > I'm sorry your GI doesn't seem very helpful, although I'm sure with > you being on so many medications and with so many problems it must be > hard for him to prescribe for you. I'd still give the domperidone a > chance, since it is tried and true for a long time (versus the > zelnorm) i hope you can get some pain releif. i use trazadone combined > with an anagysic (because apparently it "tricks" the brain into > thinking there is more analgesic than there is. Amytriptiline can have > the same effect, but something somewhere tells me that may be > contraindicated) The Gi changed my antibiotic for the bacterial > overgrowth back to cipro (thanks for the advice there, Malia). I just > hope it works, because in the summer it wasn't being too effective. If > this happens, i am going to get him to try the other antibiotics > mentioned: neomicin and bactrin were they?. I wouldn't worry too much > about the esophageal mamography. Like the GES it can vary day to day > depending on how the gi tract is working that day. My esophageal > manometry has never shown anything much but the Gi treats me anyway. I > have dilatations done every 3 months which helps with the swallowing > problems. Myabe it's the same with the pH test too (never had that > one) Domperidone does not have the yukky side effects of Reglan, so > don't worry on that score. Good luck on yur hospital visit next week- > hope you can get some answers and improved control of your symptoms. > Celia (PS I too am gling to lurk more and post less on the > gastroparesis site. I just have too little energy to prepare for > Christmas, plus make several trips to Ottawa in the time before > Christmas. I'm sure it will be there for us when we "return")> > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >

[Guest guest]

I would suggest you think about starting the CoQ10 first and then add the Carnitor. Carnitor can cause bacterial over-growth in the gut, so it might be good to get the CoQ on board first. They work synergistically, so I always take them together. I split mine four times a day.

laurie

Reply-To:

Date: Thu, 05 Dec 2002 18:44:51 -0000

To:

Subject: :Adrienne/Celia/ question re Carnicore

Dear Adrienne, Thanks for the nice long post. I had a good visit at

the neuro and he is going to try me on Carnicor (sp?) He alos said I

could try Co Ensyme Q but I thought I would try the one first and then

add the other. Does anyone have any advice on this and also the timing

of taking the Carnicor. I am really hoping it will help with the

energy, muscle issues and MAYBE have some effecton my gastroparesis.

I'm sorry your GI doesn't seem very helpful, although I'm sure with

you being on so many medications and with so many problems it must be

hard for him to prescribe for you. I'd still give the domperidone a

chance, since it is tried and true for a long time (versus the

zelnorm) i hope you can get some pain releif. i use trazadone combined

with an anagysic (because apparently it " tricks " the brain into

thinking there is more analgesic than there is. Amytriptiline can have

the same effect, but something somewhere tells me that may be

contraindicated) The Gi changed my antibiotic for the bacterial

overgrowth back to cipro (thanks for the advice there, Malia). I just

hope it works, because in the summer it wasn't being too effective. If

this happens, i am going to get him to try the other antibiotics

mentioned: neomicin and bactrin were they?. I wouldn't worry too much

about the esophageal mamography. Like the GES it can vary day to day

depending on how the gi tract is working that day. My esophageal

manometry has never shown anything much but the Gi treats me anyway. I

have dilatations done every 3 months which helps with the swallowing

problems. Myabe it's the same with the pH test too (never had that

one) Domperidone does not have the yukky side effects of Reglan, so

don't worry on that score. Good luck on yur hospital visit next week-

hope you can get some answers and improved control of your symptoms.

Celia (PS I too am gling to lurk more and post less on the

gastroparesis site. I just have too little energy to prepare for

Christmas, plus make several trips to Ottawa in the time before

Christmas. I'm sure it will be there for us when we " return " )

[Guest guest]

Ann-Marie

I agree, the cheesecake cream cheese is wonderful.

laurie

Reply-To:

Date: Thu, 5 Dec 2002 15:31:02 -0500

To: < >

Subject: Re: :Adrienne/Celia/ question re Carnicore

Hi,

I am glad to hear that you had a good visit with your Neuro. Some pointers on the Carnitor...it can/does cause some people stomach upset and nausea. And I have found that it needs some type of Fat to work in your system. Most people on Carnitor that I know eat something high in fat with each dose of Carnitor. Did your Neuro give you a prescription for the Carnitor or are you going to buy it over the counter? The prescription one is much much better. I eat cinnamon crackers with cream cheese on top when I take my Carnitor and it really helps with the stomach upset and GI problems. and I just recently found cheesecake flavored cream cheese and it is awesome.Try it!!

About the CoQ10...it is also a good supplement.Alot of people buy it from Tishcon via the internet...I can't remember the website address but I am sure that someone will jump in and let you know. I tried the OTC (over the counter) ones and they didn't work for me at all. I gave up until someone suggested that I try the ones from Epic and there was a big difference.

And you are so right to take one supplement at a time. This way you will know if you have any side effects from that supplement. If you take more than one at a time you won't know which one is giving you a problem if there is one. Please start out slow and work your way up. And give it some time...with some people it takes a few weeks to a month to feel any results, so hang in there!!!

You mentioned possibly using Bactrim for your bacteria overgrowth...just a bit of info for you...if you are allergic or have any side effects from any Sulfur drugs than you won't be able to use Bactrim. I found out the hard way. Actually I never knew I was allergic to sulfur drugs until I went on Bactrim for a very bad UTI. Just want you to know.

Good luck with the supplements and let us know how you do.

Hugs,

Ann-Marie

:Adrienne/Celia/ question re Carnicore

> Dear Adrienne, Thanks for the nice long post. I had a good visit at

> the neuro and he is going to try me on Carnicor (sp?) He alos said I

> could try Co Ensyme Q but I thought I would try the one first and then

> add the other. Does anyone have any advice on this and also the timing

> of taking the Carnicor. I am really hoping it will help with the

> energy, muscle issues and MAYBE have some effecton my gastroparesis.

> I'm sorry your GI doesn't seem very helpful, although I'm sure with

> you being on so many medications and with so many problems it must be

> hard for him to prescribe for you. I'd still give the domperidone a

> chance, since it is tried and true for a long time (versus the

> zelnorm) i hope you can get some pain releif. i use trazadone combined

> with an anagysic (because apparently it " tricks " the brain into

> thinking there is more analgesic than there is. Amytriptiline can have

> the same effect, but something somewhere tells me that may be

> contraindicated) The Gi changed my antibiotic for the bacterial

> overgrowth back to cipro (thanks for the advice there, Malia). I just

> hope it works, because in the summer it wasn't being too effective. If

> this happens, i am going to get him to try the other antibiotics

> mentioned: neomicin and bactrin were they?. I wouldn't worry too much

> about the esophageal mamography. Like the GES it can vary day to day

> depending on how the gi tract is working that day. My esophageal

> manometry has never shown anything much but the Gi treats me anyway. I

> have dilatations done every 3 months which helps with the swallowing

> problems. Myabe it's the same with the pH test too (never had that

> one) Domperidone does not have the yukky side effects of Reglan, so

> don't worry on that score. Good luck on yur hospital visit next week-

> hope you can get some answers and improved control of your symptoms.

> Celia (PS I too am gling to lurk more and post less on the

> gastroparesis site. I just have too little energy to prepare for

> Christmas, plus make several trips to Ottawa in the time before

> Christmas. I'm sure it will be there for us when we " return " )

>

>

> Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.

>

>