Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Gillian, Can't answer a lot of your questions, but can say that statins, such as Simvastatin, can lower coenzyme Q10 levels in muscle, which may affect the results of mitochondrial enzyme activity, if those assays were run as part of your testing. One researcher I am in touch with has published a statin study and she tells me they have found that not everyone who takes statins has lowered coenzyme Q10, but only a percentage of patients have this side effect. So it would not be certain that Simvastatin would affect your enzyme measurements, but certainly possible. As I understand it, there are two pathways for coenzyme Q10 in the mitochondrial respiratory chain. One pathway goes from complex I to complex II and the other goes from complex I to complex III. So theoretically it seems possible that reduced amounts of Q10 could affect the enzyme activity of complexes I, II or III. I don't know if such effects have been documented. I do know they can measure coenzyme Q10 in muscle, and that may have been one of the tests performed on your tissue. As to why they cannot tell you which mito disorder you have, it depends on what testing was done. If they found, for example, mitochondrial proliferation and ragged red fibers, that would indeed confirm a mito disorder, but those findings can occur in various mito diseases and would not pinpoint which one you have. Did they actually measure the activity of various respiratory chain enzymes such as NADH dehydrogenase or succinate dehydrogenase or cytochrome c oxidase? Did they give you percentages of activity for complexes I, II, III, IV, V? Many mito patients are given a diagnosis of " Complex I deficiency " or " Complex III and IV deficiency " etc. Others are given an acronym such as MELAS or MERRF or NARP which stand for groups of symptoms associated with certain known mtDNA mutations. Hope this helps. Barbara > Good Morning all, > > how to start..what I have been reading about the muscle biopsies > here and elsewhere leaves me with some possibly stupid queries.. > > I had an open muscle biopsy (thigh) under local..5 samples taken and > theatre runner had to have one in the lab within so many minutes... > > Would a local in the skin affect ANY of the readings depending what > they were looking for..if so what ??? > > Next most interesting question for you searchers...Would thyroxine > treatment and Simvastatin treatment have any effect on the readings > from the biopsy...these were both longterm medications....I don't > recall being asked what meds I was on .. > > The next morning after the biopsy when the neuro. came to discharge > me he was almost peeing himself in excitement and said it would only > take 2/3 weeks for the FURTHER results to come back..ie they ALREADY > had read the fresh biopsy so why are many results taking so long..is > it because yours are sent away ????... > > One year down the line for me the neuro. who I was handed over to in > NHNN groaned and put his head between his hands when I put a list in > front of him with the bloods taken during my admission and the meds > I was on at the time....plus things we had known about since the > 1970's eg kidney, hypertension, thyroid...and now PA > > Yes all my biopsy DEFINETLY shows a mito. disorder but could the > drugs/meds have thrown the result which is why they can't pin > anything down yet... > > Sorry the post is so long but hope you can help > > Gillian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2004 Report Share Posted September 30, 2004 Gillian I was taken off of some of the antioxidents and CoQ10 for six weeks before my biopsies ordered by mito specialists. They had me continue with my thyroid meds, blood pressure meds, etc. There are many of us who have a diagnosis of mito, but without a specific name. The names like MELAS and MERRF are just a group of symptoms and some with the defect might show signs of one of these or others and others in the family might not. There are only a handful of named disorders (groups of symptoms) and hundreds of different types of mito. Did you get an answer as to which complexes were affected. laurie > > Reply-To: > Date: Thu, 30 Sep 2004 08:00:59 -0000 > To: > Subject: Dumb Question ? > > Good Morning all, > > how to start..what I have been reading about the muscle biopsies > here and elsewhere leaves me with some possibly stupid queries.. > > I had an open muscle biopsy (thigh) under local..5 samples taken and > theatre runner had to have one in the lab within so many minutes... > > Would a local in the skin affect ANY of the readings depending what > they were looking for..if so what ??? > > Next most interesting question for you searchers...Would thyroxine > treatment and Simvastatin treatment have any effect on the readings > from the biopsy...these were both longterm medications....I don't > recall being asked what meds I was on .. > > The next morning after the biopsy when the neuro. came to discharge > me he was almost peeing himself in excitement and said it would only > take 2/3 weeks for the FURTHER results to come back..ie they ALREADY > had read the fresh biopsy so why are many results taking so long..is > it because yours are sent away ????... > > One year down the line for me the neuro. who I was handed over to in > NHNN groaned and put his head between his hands when I put a list in > front of him with the bloods taken during my admission and the meds > I was on at the time....plus things we had known about since the > 1970's eg kidney, hypertension, thyroid...and now PA > > Yes all my biopsy DEFINETLY shows a mito. disorder but could the > drugs/meds have thrown the result which is why they can't pin > anything down yet... > > Sorry the post is so long but hope you can help > > Gillian > > > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 Barbara.. The Q10 business and all the research is just mindblowing....I find there is not much in some journals such as the journal of Neurology, neurosurgery and psychiatry..that tends to be all genetics.. The best ones seem to be the biochemistry ones (husband hates me when the new ones are pay per view) A lot of the supplements taken by Mito. folk are given by thyroidologists and enviromental medicine docs.. but the thyroidologists don't use Q10..they use selenium a lot..along with Bvits, 'C' 'E' magnesium and potassium and often adrenal support, they all seem to overlap !!!!!! I begin to wonder where this Q10 shuttles across the complexes if depending on the 'blockage' it could cause a 'backup' and add to our problems... The articles on mito and defective steroid biosynthesis are also fantastic to read as they may possibly explain some 'symptoms ' experienced by some folks and be potentially manageable in a less hit and miss fashion..which would be wonderful marvellous etc etc.May also explain my cholestral and bio-chemically proven hormone imbalances !!! Gillian > > > > Good Morning all, > > > > > > > > how to start..what I have been reading about the muscle > biopsies > > > > here and elsewhere leaves me with some possibly stupid > queries.. > > > > > > > > I had an open muscle biopsy (thigh) under local..5 samples > taken > > > and > > > > theatre runner had to have one in the lab within so many > > minutes... > > > > > > > > Would a local in the skin affect ANY of the readings depending > > > what > > > > they were looking for..if so what ??? > > > > > > > > Next most interesting question for you searchers...Would > > thyroxine > > > > treatment and Simvastatin treatment have any effect on the > > > readings > > > > from the biopsy...these were both longterm medications....I > > don't > > > > recall being asked what meds I was on .. > > > > > > > > The next morning after the biopsy when the neuro. came to > > > discharge > > > > me he was almost peeing himself in excitement and said it > would > > > only > > > > take 2/3 weeks for the FURTHER results to come back..ie they > > > ALREADY > > > > had read the fresh biopsy so why are many results taking so > > > long..is > > > > it because yours are sent away ????... > > > > > > > > One year down the line for me the neuro. who I was handed over > > to > > > in > > > > NHNN groaned and put his head between his hands when I put a > > list > > > in > > > > front of him with the bloods taken during my admission and the > > > meds > > > > I was on at the time....plus things we had known about since > the > > > > 1970's eg kidney, hypertension, thyroid...and now PA > > > > > > > > Yes all my biopsy DEFINETLY shows a mito. disorder but could > the > > > > drugs/meds have thrown the result which is why they can't pin > > > > anything down yet... > > > > > > > > Sorry the post is so long but hope you can help > > > > > > > > Gillian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 > > I begin to wonder where this Q10 shuttles across the complexes if > depending on the 'blockage' it could cause a 'backup' and add to our > problems... Yes. Arnold Munnich, MD, PhD, Paris, and UMDF Scientific Advisory Board member, says at least some patients with complex IV deficiency get sicker on Q10 precisely because boosting complexes I, II and III can add to the " traffic jam " if IV is defective, and simply increases the amount of incomplete metabolites and the toxic effects. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 Gillian Be careful with the selenium. Our bodies need it, but don't overdo it. I was taking selenium and ended up with my hair falling out and my finger nails softening. This is common with too much selenium. Too little selenium can also cause hair loss, so it is a confusing issue. laurie > > Reply-To: > Date: Sat, 02 Oct 2004 08:08:54 -0000 > To: > Subject: Re: Dumb Question ? > > Barbara.. > > The Q10 business and all the research is just mindblowing....I find > there is not much in some journals such as the journal of Neurology, > neurosurgery and psychiatry..that tends to be all genetics.. > The best ones seem to be the biochemistry ones (husband hates me > when the new ones are pay per view) > > A lot of the supplements taken by Mito. folk are given by > thyroidologists and enviromental medicine docs.. but the > thyroidologists don't use Q10..they use selenium a lot..along with > Bvits, 'C' 'E' magnesium and potassium and often adrenal support, > they all seem to overlap !!!!!! > > I begin to wonder where this Q10 shuttles across the complexes if > depending on the 'blockage' it could cause a 'backup' and add to our > problems... > > The articles on mito and defective steroid biosynthesis are also > fantastic to read as they may possibly explain some 'symptoms ' > experienced by some folks and be potentially manageable in a less > hit and miss fashion..which would be wonderful marvellous etc > etc.May also explain my cholestral and bio-chemically proven hormone > imbalances !!! > > Gillian > > > > > >>>>> Good Morning all, >>>>> >>>>> how to start..what I have been reading about the muscle >> biopsies >>>>> here and elsewhere leaves me with some possibly stupid >> queries.. >>>>> >>>>> I had an open muscle biopsy (thigh) under local..5 samples >> taken >>>> and >>>>> theatre runner had to have one in the lab within so many >>> minutes... >>>>> >>>>> Would a local in the skin affect ANY of the readings > depending >>>> what >>>>> they were looking for..if so what ??? >>>>> >>>>> Next most interesting question for you searchers...Would >>> thyroxine >>>>> treatment and Simvastatin treatment have any effect on the >>>> readings >>>>> from the biopsy...these were both longterm medications....I >>> don't >>>>> recall being asked what meds I was on .. >>>>> >>>>> The next morning after the biopsy when the neuro. came to >>>> discharge >>>>> me he was almost peeing himself in excitement and said it >> would >>>> only >>>>> take 2/3 weeks for the FURTHER results to come back..ie they >>>> ALREADY >>>>> had read the fresh biopsy so why are many results taking so >>>> long..is >>>>> it because yours are sent away ????... >>>>> >>>>> One year down the line for me the neuro. who I was handed > over >>> to >>>> in >>>>> NHNN groaned and put his head between his hands when I put a >>> list >>>> in >>>>> front of him with the bloods taken during my admission and > the >>>> meds >>>>> I was on at the time....plus things we had known about since >> the >>>>> 1970's eg kidney, hypertension, thyroid...and now PA >>>>> >>>>> Yes all my biopsy DEFINETLY shows a mito. disorder but could >> the >>>>> drugs/meds have thrown the result which is why they can't > pin >>>>> anything down yet... >>>>> >>>>> Sorry the post is so long but hope you can help >>>>> >>>>> Gillian > > > > 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. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 Thanks Barbara, I love it when my questions get an answer and my brain has worked something out correctly..CoQ10 is now doubly banned !!! Do any of the mito docs use 'Enada' (NADH) supplement..I tried that as well...baaad news in me. Gillian > > > > I begin to wonder where this Q10 shuttles across the complexes if > > depending on the 'blockage' it could cause a 'backup' and add to > our > > problems... > > Yes. Arnold Munnich, MD, PhD, Paris, and UMDF Scientific Advisory > Board member, says at least some patients with complex IV deficiency > get sicker on Q10 precisely because boosting complexes I, II and III > can add to the " traffic jam " if IV is defective, and simply > increases the amount of incomplete metabolites and the toxic > effects. > > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 > >> > >> > >>>>I begin to wonder where this Q10 shuttles across the complexes > >>>> > >>>> > >>if > >> > >> > >>>>depending on the 'blockage' it could cause a 'backup' and add > >>>> > >>>> > >to > > > > > >>>our > >>> > >>> > >>>>problems... > >>>> > >>>> > >>>Yes. Arnold Munnich, MD, PhD, Paris, and UMDF Scientific > >>> > >>> > >Advisory > > > > > >>>Board member, says at least some patients with complex IV > >>> > >>> > >>deficiency > >> > >> > >>>get sicker on Q10 precisely because boosting complexes I, II and > >>> > >>> > >>III > >> > >> > >>>can add to the " traffic jam " if IV is defective, and simply > >>>increases the amount of incomplete metabolites and the toxic > >>>effects. > >>> > >>>Barbara > >>> > >>> > > > > > > > > > > > > > >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. > > > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
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