Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Good Morning Ladies, Debra, I agree with everything you say.. I read a very interesting research article yesterday which I will try to refind..in one of the UK journals..they are already starting to sub-divide Mito... As you know over here they have a 3 year project.the mitochondria in health and disease that will encompass a lot more diseases than we all immediatly think of.- The Autoimmune aspect is rapidly surfacing...I voiced my personal opinion to a specialist advisor that I wouldn't be surprised if 10 years down the line some mito's will be found to be autoimmune based like they think possibly MS is now...As she replied..what was thought to be 'fact' about mito. even 5 years ago has already been shown to be wrong..the inheritance patterns and everything else..and the mitochondrias involvement in other diseases is causing a lot of excitement.Who knows what the future holds. You Debra were originally diagnosed as Lupus, one person on braintalk was diagnosed as mito. but it then was proven beyond all doubt they had Lyme.. from these boards I have learnt it is possible to have other illness as well or as part of the Mito. diagnosis and it is only by ensuring we get optimal treatment for these things that we can help our bodies. In my own case I sit here typing in my wheelchair..BUT when my GP gave me HRT I felt better..when I was using the Progesterone I suddenly felt NORMAL and was able to walk around..this set my 'enquiring' GP on a hunt which is where he and I did the matrix scorecard together he found, which has led to an appt next week for adrenal function...I consider myself so lucky with him..It was his idea after listening to me, the patient, to give me hydrocortisone to try when I felt ill particularly in the mornings..abdominal pains ,nauseaous, tired, rapid pulse etc...I tried 1 tablet one morning..it worked... :-) I hope my next round of tests will guide him and my consultant on the best way forward. It is this building of trust between Doctor and patient that is so important..I trust him and I think he trusts me..Everytime he gave me yet another BP med I was violently ill...the list of what not to give me is horrendous for BP..basically DON'T...but he believed me when I told him how my body, felt, reacted...He then 'chatted' with one of the retired GP's with all those years of experience and knowledge gained..my youngster was immediatly directed thyroid/adrenals...I love that sort of partnership but fear it happens all too rarely. How many youngsters who do enquire get laughed at by the elders..but how much knowledge could these elders impart? These medics guard so jealously their positions at times.Suppose it's like our sons and husbands, young bull old bull. As for being a 'lost cause' I became that years ago..still am as the poor things can't give me one of their definite labels just Mito. Cyto. This is where I found the neuro aspect left me 'cold' I am not interested in a genetic molecular diagnosis but in maintaning optimal wellness.Lets treat what is being shown to be wrong !!! When they listen are live quality can be improved. Gillian -- In , " Debra Beckmann " wrote: > I think through this two ways...the younger newer doctors have an energy that older, tried, and true doctors have lost, but the newer doctors lack the experience the older doctors cherish. YES, MOST DEFINITELY, mito is surfacing as never before and SOON is going to actually be taught in med school because it is the basis for many, many, problems. It has stayed in the background because few hospitals/labs and no doctor's offices have the equipment to test for weird or unusual symptoms. When one patient comes in and every system has something wrong the poor doctor has no idea where to start looking. I think of myself as healthy until I fill out a health survey...then I am tempted to just write " lost cause " across the whole thing. > > There are physicians in all fields that are interested in research and will spend PRIVATE time looking for an answer. It is a precious relationship when a doctor recognizes his/her patient as a human and not a client! Once this relationship is built then the physician can rely on the patient's ability(mito patients know their bodies well and accurately) to assist in treatment. I had one very young doctor ask if I was certain I had Lupus as it has been used as a catch-all the past few years...no joke, it is looking like I was one of those mis-diagnosed and I got Lupus pulled out of the hat. > > Debra > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Good Morning Ladies, Debra, I agree with everything you say.. I read a very interesting research article yesterday which I will try to refind..in one of the UK journals..they are already starting to sub-divide Mito... As you know over here they have a 3 year project.the mitochondria in health and disease that will encompass a lot more diseases than we all immediatly think of.- The Autoimmune aspect is rapidly surfacing...I voiced my personal opinion to a specialist advisor that I wouldn't be surprised if 10 years down the line some mito's will be found to be autoimmune based like they think possibly MS is now...As she replied..what was thought to be 'fact' about mito. even 5 years ago has already been shown to be wrong..the inheritance patterns and everything else..and the mitochondrias involvement in other diseases is causing a lot of excitement.Who knows what the future holds. You Debra were originally diagnosed as Lupus, one person on braintalk was diagnosed as mito. but it then was proven beyond all doubt they had Lyme.. from these boards I have learnt it is possible to have other illness as well or as part of the Mito. diagnosis and it is only by ensuring we get optimal treatment for these things that we can help our bodies. In my own case I sit here typing in my wheelchair..BUT when my GP gave me HRT I felt better..when I was using the Progesterone I suddenly felt NORMAL and was able to walk around..this set my 'enquiring' GP on a hunt which is where he and I did the matrix scorecard together he found, which has led to an appt next week for adrenal function...I consider myself so lucky with him..It was his idea after listening to me, the patient, to give me hydrocortisone to try when I felt ill particularly in the mornings..abdominal pains ,nauseaous, tired, rapid pulse etc...I tried 1 tablet one morning..it worked... :-) I hope my next round of tests will guide him and my consultant on the best way forward. It is this building of trust between Doctor and patient that is so important..I trust him and I think he trusts me..Everytime he gave me yet another BP med I was violently ill...the list of what not to give me is horrendous for BP..basically DON'T...but he believed me when I told him how my body, felt, reacted...He then 'chatted' with one of the retired GP's with all those years of experience and knowledge gained..my youngster was immediatly directed thyroid/adrenals...I love that sort of partnership but fear it happens all too rarely. How many youngsters who do enquire get laughed at by the elders..but how much knowledge could these elders impart? These medics guard so jealously their positions at times.Suppose it's like our sons and husbands, young bull old bull. As for being a 'lost cause' I became that years ago..still am as the poor things can't give me one of their definite labels just Mito. Cyto. This is where I found the neuro aspect left me 'cold' I am not interested in a genetic molecular diagnosis but in maintaning optimal wellness.Lets treat what is being shown to be wrong !!! When they listen are live quality can be improved. Gillian -- In , " Debra Beckmann " wrote: > I think through this two ways...the younger newer doctors have an energy that older, tried, and true doctors have lost, but the newer doctors lack the experience the older doctors cherish. YES, MOST DEFINITELY, mito is surfacing as never before and SOON is going to actually be taught in med school because it is the basis for many, many, problems. It has stayed in the background because few hospitals/labs and no doctor's offices have the equipment to test for weird or unusual symptoms. When one patient comes in and every system has something wrong the poor doctor has no idea where to start looking. I think of myself as healthy until I fill out a health survey...then I am tempted to just write " lost cause " across the whole thing. > > There are physicians in all fields that are interested in research and will spend PRIVATE time looking for an answer. It is a precious relationship when a doctor recognizes his/her patient as a human and not a client! Once this relationship is built then the physician can rely on the patient's ability(mito patients know their bodies well and accurately) to assist in treatment. I had one very young doctor ask if I was certain I had Lupus as it has been used as a catch-all the past few years...no joke, it is looking like I was one of those mis-diagnosed and I got Lupus pulled out of the hat. > > Debra > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Hi Gillian, I really admire the way you have tracked all these clues from your test results and solved (or are solving) some of your metabolic mysteries. This kind of bulldog tenacity is absolutely necessary for mito patients, IMO. And I think all of us are constantly searching for ways to reduce the 'drag effect' the disease has on life in general and really live each day in the fullest way possible. You are probably in good company on the molecular genetic analysis, as I don't think that aspect of scientific understanding is as high a priority for most patients as it is for me. Partly, I picked this up from contacts with researchers, but it also has to do with the peculiar mito genetics in our family. For us, identifiying the underlying mutation of the global mito defect could make a major difference in treatment and outcome, and would also confirm exactly which family members have which defects (there are at least two), which in turn would have a positive impact on the care they receive in the system. But mostly I am a very curious person and I don't like unknowns, metabolic or otherwise. I have learned to live with unknowns, but they stick in my brain like a burr. This is mostly good though, because it has made it possible for us to follow clues Gillian-style and solve at least a few mysteries. Many more to go though. Take care, Barbara > > I think through this two ways...the younger newer doctors have an > energy that older, tried, and true doctors have lost, but the newer > doctors lack the experience the older doctors cherish. YES, MOST > DEFINITELY, mito is surfacing as never before and SOON is going to > actually be taught in med school because it is the basis for many, > many, problems. It has stayed in the background because few > hospitals/labs and no doctor's offices have the equipment to test > for weird or unusual symptoms. When one patient comes in and every > system has something wrong the poor doctor has no idea where to > start looking. I think of myself as healthy until I fill out a > health survey...then I am tempted to just write " lost cause " across > the whole thing. > > > > There are physicians in all fields that are interested in research > and will spend PRIVATE time looking for an answer. It is a precious > relationship when a doctor recognizes his/her patient as a human and > not a client! Once this relationship is built then the physician > can rely on the patient's ability(mito patients know their bodies > well and accurately) to assist in treatment. I had one very young > doctor ask if I was certain I had Lupus as it has been used as a > catch-all the past few years...no joke, it is looking like I was one > of those mis-diagnosed and I got Lupus pulled out of the hat. > > > > Debra > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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