Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Others can share their experience, but for me Carnitor produced significant improvement in a long-standing abdominal pain syndrome within 48 hours. It has also boosted ATP levels in my muscle, though not enough that I noticed any improvement in muscle function. We know about the ATP improvement because I was part of a research project in which muscle biospies were taken before and after treatment with Carnitor. I now take 2 gms a day, but have been on 3 gms most of the last 15 years. (Tabs are 330 mg. each, so doses mentioned are approximate.) I also take riboflavin 100 mg. a day. That produced marked improvement in muscle weakness and pain within 48 hours--very dramatic response, more so than for most mito patients. Riboflavin is the best " pain pill " I've ever found. In fact I have not found any other patient, other than my son, who has responded so dramatically to riboflavin, though a few cases have been reported in the medical journals. On the flip side, I have known one or two patients who felt riboflavin made their symptoms worse. I do not take CoQ10 as I have a marked negative reaction to it. This is unusual but happens with some mito patients according to Dr. Alfred Muench, a European researcher. There is another mito patient on the list who also had a negative reaction to Q10--a, as I recall. Alpha lipoic acid also caused a negative reaction for me. I take Klor-Con, rx potassium, 25 meq 3 times a day. It has helped significantly with symptoms of neuropathy and attacks of muscle weakness precipatated by lying down after activity. (My blood levels of potassium have been found low on various occasions.) I take 400 mg. Vit E and 500 Vit C. Have not noticed any particular effect, except that the Vit E seems to boost immunity--fewer infections. Note: My doctor has always started each supplement separately so we can interpret any reactions, positive or negative. This is essential, in his opinion, because there are few if any objective tests useful for monitoring the effects of the cocktail. Hope this helps. Barbara > I would like any info about the " Mito Cocktail " > regarding dosage on a daily basis and whether taken with > or in-between meals. Also, about how long it took to > see an improvement in symptoms. > > My appointment with the neuromuscular specialist is not > until JAN 2003, and I am in so much pain. Figure I have > nothing to lose until then. > > What dosage and when do you take: > > C0-Q10, Carnitor(L-Carnitine), Alpha Lipoic Acid, Vits. > B1, B2, C, and E and Biotin. > > > Thanks, > Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Jackie There is a list of the supplements on the Mitoldies web site http://groups.yahoo.com/group/ / The are listed with amounts and which ones to try first, second, etc. I would not go very high without checking first with a doctor. Do you have a PCP that can at least oversee this. My suggestion would be to start only one at a time. That way, if you have problems, you'll know what it is from. I did not notice improvement until I had added several supplements (with medical supervision) and increased my CoQ10 to a higher level. This seems to be necessary for our family. I have not noticed much improvement, but I have been fairly stable for over 3 years. For the pain, I was prescribed Lamictal and have Quinine on hand when I have overdone and am having cramping. I hope this helps, but please be careful and get a doctor to work with you on this. laurie > From: jackieweaver@... > Reply-To: > Date: Mon, 15 Jul 2002 17:39:22 +0000 > To: > Subject: Mito Cocktail > > I would like any info about the " Mito Cocktail " > regarding dosage on a daily basis and whether taken with > or in-between meals. Also, about how long it took to > see an improvement in symptoms. > > My appointment with the neuromuscular specialist is not > until JAN 2003, and I am in so much pain. Figure I have > nothing to lose until then. > > What dosage and when do you take: > > C0-Q10, Carnitor(L-Carnitine), Alpha Lipoic Acid, Vits. > B1, B2, C, and E and Biotin. > > > Thanks, > Jackie > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Hi Jackie, I am so sorry to hear that you are having so much pain. Believe me I know what you are going through. I have been in pain for the last 17 yrs. I just recently(the last 2 1/2 yrs.) found a doctor that was able to address my pain issues. Don't get me wrong, I still have pain but it is no where near the level it was before. I didn't and don't expect to be totally pain free with this disease. I feel for you and hope and pray that you can find some relief from your pain. Now on to the cocktail....I was dx'd in 1995 and just now started the cocktail. As you know I see the same doctor that you will be seeing in Feb. I know she will be putting you through tons of blood work and tests when you do see her. And if you do go for a muscle biopsy you will have to GO OFF the SUPPLEMENTS for at least ONE month if not more. I know I mentioned in an email to you that she herself doesn't do the muscle biopsy but she does and will recommend a muscle biopsy if she believes it is necessary. I am on CoQ10, Vit.C, Vit. B2, Vit BComplex 100, Carnitor, Creatine Serum. Actually I still haven't started the Carnitor. The pharmacy could only get it in pill form and with all the information from the list here I just not sure if I should start the Carnitor. My suggestions to you: 1.) Please try to find a Pain Management Doctor that can address your pain issues for you. This is soo very important. If you have less pain you will feel so much better about life. With pain comes depression. Alot of doctors think that it is the depression that causes the pain, but I don't and neither does my pain doctor. 2.) Try to get into a different MDA Clinic. Are you scheduled to go to the town Clinic or the one in Philadelphia? I know that there are 2 MDA Clinics in Philly, did they close down one of them? Have you thought about maybe going to New Jersey? There is one in Trenton, NJ listed. And also listed is Edison, Englewood, Long Branch, Newark,and Stratford. Are any of these close enough for you to go to? Another suggestion would be to go to your regular PCP and take him/her some information on MD from the web site and info on the Cocktail and maybe he would be willing to help you until you can see the MDA doctor. Good Luck and if I can be of any help please let me know, I am here for you. BTW, are you going to Maripat's for the picnic this weekend? Gentle Hugs Ann-Marie Mito Cocktail > I would like any info about the "Mito Cocktail" > regarding dosage on a daily basis and whether taken with > or in-between meals. Also, about how long it took to > see an improvement in symptoms.> > My appointment with the neuromuscular specialist is not > until JAN 2003, and I am in so much pain. Figure I have > nothing to lose until then.> > What dosage and when do you take:> > C0-Q10, Carnitor(L-Carnitine), Alpha Lipoic Acid, Vits. > B1, B2, C, and E and Biotin.> > > Thanks,> Jackie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Barbara, you are right. I am the other one on the list that has a bad reaction to Co-Q10. I was so glad to find another person who has that reaction (not that I am glad that it doesn't help you!) I finally have a doctor who is listening to me and is interested about the mito. He is my cardiologist, but he wants to start me on more of the cocktail. I am supposed to start L-Carnitine. Where can I find this? Can I find it in stores or is it easier/cheaper to go on the internet? That is what the cardio-surgeon told. me to try the internet. Any suggestions? Thanks and smiles, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 > I am supposed to start L-Carnitine. Where can I find this? > Can I find it in stores or is it easier/cheaper to go on the internet? > That is what the cardio-surgeon told. me to try the internet. Any > suggestions? > > Thanks and smiles, > a a, I think most of us here take the prescription form, Carnitor. Ask your cardiologist about writing the prescription. You can fill it through whatever pharmacy your insurance offers. Take care, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Barbara, Thanks! I didn't even realize you could get a prescription for it. I guess the cardiologist and cardio-surgeon didn't realize that either. I will e-mail him today to get the prescription. Smiles, a a, I think most of us here take the prescription form, Carnitor. Ask your cardiologist about writing the prescription. You can fill it through whatever pharmacy your insurance offers. Take care,Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Rx Canitor, the only way to go as far as I am concerned. You at least know you are getting the same strength from pill to pill or bottle to bottle if you get the liquid. a C Koch wrote: > > Barbara, you are right. I am the other one on the list that has a bad > reaction to Co-Q10. I was so glad to find another person who has that > reaction (not that I am glad that it doesn't help you!) > > I finally have a doctor who is listening to me and is interested about > the mito. He is my cardiologist, but he wants to start me on more of the > cocktail. I am supposed to start L-Carnitine. Where can I find this? > Can I find it in stores or is it easier/cheaper to go on the internet? > That is what the cardio-surgeon told. me to try the internet. Any > suggestions? > > Thanks and smiles, > a > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Thanks to everyone for the responses on the Carnitor. I did some research and even though GNC does have L-Carnintine, I would rather make sure I am getting the same strength and the right stuff! Smiles, a Rx Canitor, the only way to go as far as I am concerned. You at least know you are getting the same strength from pill to pill or bottle to bottle if you get the liquid. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Also, it is the only l-carnitine that my insurance will pay for. You need to get a prescription. If my picky military insurance will pay for it, almost all should. Janet Sample Re: Re: Mito Cocktail > Rx Canitor, the only way to go as far as I am concerned. You at least know you are getting the same strength from pill to pill or bottle to bottle if you get the liquid. > > > > a C Koch wrote: > > > > Barbara, you are right. I am the other one on the list that has a bad > > reaction to Co-Q10. I was so glad to find another person who has that > > reaction (not that I am glad that it doesn't help you!) > > > > I finally have a doctor who is listening to me and is interested about > > the mito. He is my cardiologist, but he wants to start me on more of the > > cocktail. I am supposed to start L-Carnitine. Where can I find this? > > Can I find it in stores or is it easier/cheaper to go on the internet? > > That is what the cardio-surgeon told. me to try the internet. Any > > suggestions? > > > > Thanks and smiles, > > a > > > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
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