Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 Some of the individuals that have responded to B12 have had normal or low normal levels others have had low levels. B12 is relatively inexpensive and readily available so it might be worth a trial. If you decide to try remember the dose required is high. Some of my daughters other vitanim levels have been normal yet they require very high oral doses to abort symptoms, ie B2 and migraine headaches. They take 800 mg/day with a nice clinical response. Honestly, I think (just my opinion) that there is so much lack of knowledge in regards to mitochondrial disease and metabolism that physicians just don't know and many aren't willing to " think outside of the box " . For my girls, if it isn't likely to hurt and may help, I;m willing to try. pamelama33 pamelama33@...> wrote: Joanne do you know if the B12 is effective (for anything) if a pathology test says your B12 levels are normal? A couple of doctors have told me there is no use taking it otherwise, while another said you need more.... thks pamela Re: Daughter pelvic pain (gone) depression (new) There are a number (albeit small) of individuals with mitochondrial disease or other metabolic disease with severe depression or other spych issues, that seem to respond very well to extremely high doses of vitatmin B12 taken sublingually. IT isn't overly expensive so it might be worth trying. It doesn't taste great but the clinical response has been remarkable. pamelama33 pamelama33@...> wrote: Hi everyone - asking for your thoughts again for my daughter (22). First an update if you remember her last problem was acute pelvic pain which was thought to be gynaecological as it seemed to come before and into her period. Laparoscopy showed nothing significant. BC pill was tried continuously and it made it much worse so after several dashes to emergency was finally ceased. The pain was helped only by heat. It was unrelenting and I think broke her down as she started blacking out (dx for this was neurocardiogenic vasovagal syncope which some of you had mentioned already). Anyway we started her on Magnesium Orotate 800 mg per day 2-3 months ago and amazingly the pain seems to have gone away! Quite a miracle, so it must have been some sort of cramping or spasm. As part of her mito investigations she has been to a gastroenterologist who is checking her for dysmotility and he thinks that it might be related ie spasm of the colon triggered by hormonal changes. Well hopefully it is gone and she is not willing to stop the Mg Orotate to find out ! With one problem gone another has started and that is severe and frightening depression which is so unlike how she has been in the past. I believe she is in crisis the only thing I am not sure about is whether it is just a direct result of feeling low about not being able to perform over the last few years (she is constantly fatigued and sick, glands up etc) and this affected school years and further study in photography . Or perhaps there is a biochemical reason ie an energy crisis between the mitochondria and the brain (perhaps related to all the pain she has been experiencing over the last year) . I feel the latter must be closer or maybe its a combination. Penny has been on CoQ10 300 mg for a few months now and just started B2 - yet to try Carnitine but that is next. Any other ideas and has anyone had anything similar? She is not really responding that well to SSRI antidepressants at least yet (after a few weeks on them) they are not enough to stop some dramatic episodes of sudden diving into sobbing, shaking, episodes where she is terrified she might hurt herself, temporary inability to function etc. Other times she is quite happy and normal. I feel it has to be related to the mito. My thinking is that no matter what you throw at someone they're not going to work if the energy pathways are not there - does that make sense? I'm not sure whether she needs more rest or more exercise - for sure we always strive for better nutrition. Any ideas or experiences would be appreciated. Would be good to understand the processes like some of you biochemistry wizards .. Pamela (Melas) about Penny (also Melas) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 --- pamelama33 pamelama33@...> wrote: > Joanne do you know if the B12 is effective (for > anything) if a pathology test says your B12 levels > are normal? > There are a number (albeit small) of individuals > with mitochondrial disease or other metabolic > disease with severe depression or other spych > issues, that seem to respond very well to extremely > high doses of vitatmin B12 taken sublingually. IT > isn't overly expensive so it might be worth trying. > It doesn't taste great but the clinical response has > been remarkable. My son is one of those who has had a remarkable response. He has normal B-12. The thing is---it's not going to hurt you. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 velly interesting ... that B12 is therapeutic even though levels are " normal " (what is " normal " anyway). Thks for the info Joanne. pamela Re: Daughter pelvic pain (gone) depression (new) There are a number (albeit small) of individuals with mitochondrial disease or other metabolic disease with severe depression or other spych issues, that seem to respond very well to extremely high doses of vitatmin B12 taken sublingually. IT isn't overly expensive so it might be worth trying. It doesn't taste great but the clinical response has been remarkable. pamelama33 pamelama33@...> wrote: With one problem gone another has started and that is severe and frightening depression which is so unlike how she has been in the past. I believe she is in crisis the only thing I am not sure about is whether it is just a direct result of feeling low about not being able to perform over the last few years (she is constantly fatigued and sick, glands up etc) and this affected school years and further study in photography . Or perhaps there is a biochemical reason ie an energy crisis between the mitochondria and the brain (perhaps related to all the pain she has been experiencing over the last year) . I feel the latter must be closer or maybe its a combination. Penny has been on CoQ10 300 mg for a few months now and just started B2 - yet to try Carnitine but that is next. We Made Changes Your Yahoo! Groups email is all new. Learn More Share Feedback Recent Activity a.. 3New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
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