Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Fania- thanks- I am doing rather well, trying for a new baby, and still in nursing school. Got about 2 years to go, but I can probably do it in one with honors. Grades are not suffering from my poor attendance. That article really pissed me off but good. I OWN a tree, which Nick climbs every bloody day- so I suppose I am a bad parent? Gee, then why don't the countless professionals I worked with for Kayleigh, and later for Nick, and now Lindsey think so? Maybe this guy is just talking out of his rectum to hear his cranium rattle. I'm going off digest in about a week, so then I'll be back... consider yourselves warned... Love Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 --- In , " Tammy \ " the owlpenguin\ " " I OWN a tree, which Nick climbs > every bloody day- so I suppose I am a bad parent? ****hmmmmm, must be the wrong kind of tree. <g>**** > I'm going off digest in about a week, so then I'll be back... consider > yourselves warned... > Love > Tammy Glad to hear it, Tammy. I just thought about you this week and was about to ask if anyone had heard from you. Been to Doylestown lately? Don't forget to let me know if you are coming for a visit....if time allows. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 I deal with this too. I call it scrambled brain syndrome. I heard that Crofford, MD, was working on this aspect of CFIDS and tried to contact her at the U of MI only to have one appointment which took almost a year to get. And, then, she left for another state. So, back to square one. Have any of you noticed how much these symptoms have in common with some variants of ADD? There is a questionnaire on www.amenclinic.com that can help determin what kind of ADD someone has. mjh In a message dated 6/17/2005 7:44:28 AM Eastern Daylight Time, writes: Dear Adrienne / Katrina: I can relate to everything you are saying. Since I no longer work and are less exposed to society...I find myself having trouble communicating when I am around people. This is very embarrasing for me. I know people are probably thinking I have been drinking or using drugs. My brain feels like I have lost the acuity I used to have. I frequently have trouble finding words and my memory is shot for events or details that I want to remember to tell my husband about from earlier in the day. My thinking is very slow and I often become confused and flustered when asked questions at the doctor's office. Dates particularly baffle me and doing the check book without a calculator is impossible. I have trouble finishing anything (I used to be a real multi-tasker). I get distracted trying to do the smallest things such as writing a check or making the bed. I seem to flit from one thing to another - leaving things half-finished in my wake. All this is so different than the way I used to be. I often find myself just sitting staring and being not particularly bothered by it. These changes are all very frightening for me. I have hypercoagulable syndrome and am on Coumadin. Sometimes I wonder if I have had a stroke or am having TIAs that have been undetected. Other times, I wonder if these changes are due to drug side effects (I am on several) or just to the fact that I really don't have much mental stimulation going on because I am at home- In any case, I don't feel neurologically intact and I know that there must be some real physical deterioration going on to cause such profound symptoms. Teena mjh http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 The hippocampus is the part of the brain involved in information retrieval of data stored in memory. The hippocampus uses a lot of energy, ATP, in performing this task. If the hippocampus does not have enough ATP, it's not going to work like it supposed to. There was research finding showing that the hippocampus of people with CFS/FMS, particularly the right, was generating more lactic acid. This was in one of Cheney's presentations, I think the 1999 Dallas presentation. Lactic acid is a byproduct of glycolysis which is an indicator that the hippocampus is very likely not getting enough ATP since it is having to rely upon glycolysis to make some. From all my observations, there is no permanent brain damage associated with CFS/FMS. Restore functioning to the hippocampus and all those things stored in memory that were thought forgotten are now once again retrievable. This block to brain metabolism could be due to a number of different things. Without oxygen the cell cannot make ATP, so anything that could impede oxygen delivery could contribute to the condition, ie low blood flow, elevated blood pH, increased blood viscosity, low blood volume. Or, the block could be due to some missing element that is required in one of the metabolic processes. All the best, Jim > I deal with this too. I call it scrambled brain syndrome. I heard that > Crofford, MD, was working on this aspect of CFIDS and tried to contact her > at the U of MI only to have one appointment which took almost a year to get. > And, then, she left for another state. So, back to square one. > > Have any of you noticed how much these symptoms have in common with some > variants of ADD? There is a questionnaire on www.amenclinic.com that can help > determin what kind of ADD someone has. > > mjh > > In a message dated 6/17/2005 7:44:28 AM Eastern Daylight Time, > writes: > Dear Adrienne / Katrina: > > I can relate to everything you are saying. Since I no longer work and are > less exposed to society...I find myself having trouble communicating > when I am around people. This is very embarrasing for me. I know people > are probably thinking I have been drinking or using drugs. My brain feels > like I have lost the acuity I used to have. I frequently have trouble > finding words and my memory is shot for events or details that I want to > remember to tell my husband about from earlier in the day. My thinking is > very slow and I often become confused and flustered when asked questions > at the doctor's office. Dates particularly baffle me and doing the check > book without a calculator is impossible. I have trouble finishing > anything (I used to be a real multi-tasker). I get distracted trying to > do the smallest things such as writing a check or making the bed. I seem > to flit from one thing to another - leaving things half-finished in my > wake. All this is so different than the way I used to be. I often find > myself just sitting staring and being not particularly bothered by it. > These changes are all very frightening for me. I have hypercoagulable > syndrome and am on Coumadin. Sometimes I wonder if I have had a stroke or > am having TIAs that have been undetected. Other times, I wonder if these > changes are due to drug side effects (I am on several) or just to the > fact that I really don't have much mental stimulation going on because I > am at home- In any case, I don't feel neurologically intact and I know > that there must be some real physical deterioration going on to cause > such profound symptoms. > > Teena > > mjh > http://foxhillfarm.us/FireBasil/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Who cares today whether in theory it is fixable tomorrow? Younger people than me, I suppose. Adrienne Re: Digest Number 4256 The hippocampus is the part of the brain involved in information retrieval of data stored in memory. The hippocampus uses a lot of energy, ATP, in performing this task. If the hippocampus does not have enough ATP, it's not going to work like it supposed to. There was research finding showing that the hippocampus of people with CFS/FMS, particularly the right, was generating more lactic acid. This was in one of Cheney's presentations, I think the 1999 Dallas presentation. Lactic acid is a byproduct of glycolysis which is an indicator that the hippocampus is very likely not getting enough ATP since it is having to rely upon glycolysis to make some. From all my observations, there is no permanent brain damage associated with CFS/FMS. Restore functioning to the hippocampus and all those things stored in memory that were thought forgotten are now once again retrievable. This block to brain metabolism could be due to a number of different things. Without oxygen the cell cannot make ATP, so anything that could impede oxygen delivery could contribute to the condition, ie low blood flow, elevated blood pH, increased blood viscosity, low blood volume. Or, the block could be due to some missing element that is required in one of the metabolic processes. All the best, Jim > I deal with this too. I call it scrambled brain syndrome. I heard that > Crofford, MD, was working on this aspect of CFIDS and tried to contact her > at the U of MI only to have one appointment which took almost a year to get. > And, then, she left for another state. So, back to square one. > > Have any of you noticed how much these symptoms have in common with some > variants of ADD? There is a questionnaire on www.amenclinic.com that can help > determin what kind of ADD someone has. > > mjh > > In a message dated 6/17/2005 7:44:28 AM Eastern Daylight Time, > writes: > Dear Adrienne / Katrina: > > I can relate to everything you are saying. Since I no longer work and are > less exposed to society...I find myself having trouble communicating > when I am around people. This is very embarrasing for me. I know people > are probably thinking I have been drinking or using drugs. My brain feels > like I have lost the acuity I used to have. I frequently have trouble > finding words and my memory is shot for events or details that I want to > remember to tell my husband about from earlier in the day. My thinking is > very slow and I often become confused and flustered when asked questions > at the doctor's office. Dates particularly baffle me and doing the check > book without a calculator is impossible. I have trouble finishing > anything (I used to be a real multi-tasker). I get distracted trying to > do the smallest things such as writing a check or making the bed. I seem > to flit from one thing to another - leaving things half-finished in my > wake. All this is so different than the way I used to be. I often find > myself just sitting staring and being not particularly bothered by it. > These changes are all very frightening for me. I have hypercoagulable > syndrome and am on Coumadin. Sometimes I wonder if I have had a stroke or > am having TIAs that have been undetected. Other times, I wonder if these > changes are due to drug side effects (I am on several) or just to the > fact that I really don't have much mental stimulation going on because I > am at home- In any case, I don't feel neurologically intact and I know > that there must be some real physical deterioration going on to cause > such profound symptoms. > > Teena > > mjh > http://foxhillfarm.us/FireBasil/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 You should care. It's not a theory. It was an observation. Those that got better had cognitive function return to normal. You should care about that. It means that when you get better, your brain function too will most likely return to normal. All the best, Jim > Who cares today whether in theory it is fixable tomorrow? Younger people than me, I suppose. > Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 I am glad there is someone around to help me set my thinking/caring priorities. " When I get well??? " I have been chronic for 24+ yrs. Before that intermittent for about 20 yrs. Mostly all I get is tireder. A Re: Digest Number 4256 You should care. It's not a theory. It was an observation. Those that got better had cognitive function return to normal. You should care about that. It means that when you get better, your brain function too will most likely return to normal. All the best, Jim > Who cares today whether in theory it is fixable tomorrow? Younger people than me, I suppose. > Adrienne This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Yeah, after 26 yrs of it, I can't find my list of what to do when I 'get well' either. I'm pretty sure the job I had has filled by now :-), the career field changed to where I'm now an obsolete dinosaur, past menopause, should have grandkids but never had energy have KIDS, so 'when I get well' (where's the cure??? ) life is not going to 'pick up where it left off'. We have to make the best of what we have and find ways to live with it. Marcia Re: Digest Number 4256 You should care. It's not a theory. It was an observation. Those that got better had cognitive function return to normal. You should care about that. It means that when you get better, your brain function too will most likely return to normal. All the best, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 We have to make the best of what we have and find ways to live with it. I agree, but I would add, continue to explore ways to maximize my health. Fortunately, being sick doesn't completely eliminate the possibility of experiencing the real important things in life such as joy, and love. I am working at maximizing that, too. Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 My now 17 yo son was considered as possibly having ADD 3 years ago, plus having a lot of anxiety/depression. . . in the past 10 months he developed physical symptoms 90% overlapping with my own (CFIDS). He was just tested for Lyme, he is positive for long-term and active infection. So. . . again, lyme and other similar infections probably need to be considered, especially if one gets little help from any psychotropic or paradoxical reactions to them. His neurological symptoms showed up long before physical ones. ViktoryaLynn > I deal with this too. I call it scrambled brain syndrome. I heard that > Crofford, MD, was working on this aspect of CFIDS and tried to contact her > at the U of MI only to have one appointment which took almost a year to get. > And, then, she left for another state. So, back to square one. > > Have any of you noticed how much these symptoms have in common with some > variants of ADD? There is a questionnaire on www.amenclinic.com that can help > determin what kind of ADD someone has. > > mjh > > In a message dated 6/17/2005 7:44:28 AM Eastern Daylight Time, > writes: > Dear Adrienne / Katrina: > > I can relate to everything you are saying. Since I no longer work and are > less exposed to society...I find myself having trouble communicating > when I am around people. This is very embarrasing for me. I know people > are probably thinking I have been drinking or using drugs. My brain feels > like I have lost the acuity I used to have. I frequently have trouble > finding words and my memory is shot for events or details that I want to > remember to tell my husband about from earlier in the day. My thinking is > very slow and I often become confused and flustered when asked questions > at the doctor's office. Dates particularly baffle me and doing the check > book without a calculator is impossible. I have trouble finishing > anything (I used to be a real multi-tasker). I get distracted trying to > do the smallest things such as writing a check or making the bed. I seem > to flit from one thing to another - leaving things half-finished in my > wake. All this is so different than the way I used to be. I often find > myself just sitting staring and being not particularly bothered by it. > These changes are all very frightening for me. I have hypercoagulable > syndrome and am on Coumadin. Sometimes I wonder if I have had a stroke or > am having TIAs that have been undetected. Other times, I wonder if these > changes are due to drug side effects (I am on several) or just to the > fact that I really don't have much mental stimulation going on because I > am at home- In any case, I don't feel neurologically intact and I know > that there must be some real physical deterioration going on to cause > such profound symptoms. > > Teena > > mjh > http://foxhillfarm.us/FireBasil/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Hi Marcia: I'm sorry that you're feeling so down, and if I understand correctly, life wouldn't change if one were to get better. I don't mean to sound like a pollyanna but I still have hope (even though I've been very sick especially since my surgery) and I most certainly am getting close to my mid 60's. Yes, I can and do get discouraged sometimes, especially if I focus on what will or can I do when and if I ever get well. ly, I'm sick of being sick and I don't mind being one of those elderly ladies that just enjoys the smell of the flowers and enjoys the sun-if that's what God wants me to do. natasha Re: Digest Number 4256 You should care. It's not a theory. It was an observation. Those that got better had cognitive function return to normal. You should care about that. It means that when you get better, your brain function too will most likely return to normal. All the best, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Dear Adrienne, This is a great attitude. THANK YOU! Michele G > > We have to make the best of what we have and find ways to live with it. > > I agree, but I would add, continue to explore ways to maximize my health. > > Fortunately, being sick doesn't completely eliminate the possibility of experiencing the real important things in life such as joy, and love. > I am working at maximizing that, too. > Adrienne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Sorry, disagree, we are all going to get better. Maybe not from the same treatment, but eventually several good treatments will be available. However, until then, I agree completely w/ the comments below. Mike C > > > > We have to make the best of what we have and find ways to live > with it. > > > > I agree, but I would add, continue to explore ways to maximize my > health. > > > > Fortunately, being sick doesn't completely eliminate the > possibility of experiencing the real important things in life such as > joy, and love. > > I am working at maximizing that, too. > > Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Adrienne-I agree and good for you. Yup, I can be a very good couch potato but if I can't move I can't move. I do what I can; I can look out my windows and hear the birds, enjoy the sunlight, and just be grateful to God that He's given me hope for the future. When I can move I've gotten in my car and gone to a mountain stream and just sit on the rocks and enjoy the sound of the water and scenery-this really is a very beautiful state. I love to drive around and just look at the mountains and how the sun, clouds, snow, fog, etc reflect (I guess that would be the right word) all of these elements sit on the mountains- just some of my thoughts-yes, I've had this disease for a good 25 years and possibly most of my life. natasha Re: Digest Number 4256 Sorry, disagree, we are all going to get better. Maybe not from the same treatment, but eventually several good treatments will be available. However, until then, I agree completely w/ the comments below. Mike C > > > > We have to make the best of what we have and find ways to live > with it. > > > > I agree, but I would add, continue to explore ways to maximize my > health. > > > > Fortunately, being sick doesn't completely eliminate the > possibility of experiencing the real important things in life such as > joy, and love. > > I am working at maximizing that, too. > > Adrienne This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Adrienne: Great positive attitude. It has been proven that positive attitudes are helpful in dealing with a lot of illnesses. For most of us with CFS/FMS, it is not a death sentence but an exercise in frustration. I am trying to fit as much joy and love in my life and that of my family as I can. I have lived with a depressed person for 30 years and find it can drag me down if I let it~I have to choose to not let it and share love and joy with others and help them, thus helping myself in the process. That is why I give myself permission to do something for myself every day (not being selfish, just being positive)~whether it is to do a chore around the house that I enjoy, reading all day or part of the day, painting, gardening, taking a long bath, or an extra or extra-long nap because I need extra rest. I have found that very helpful in lessening my stress load, which has been indeed heavy the past four years especially. The other thing that is helpful is to do something for someone else as I am able~that may be a telephone call, a personal visit, a hug, a letter, a secret encouraging note, listening (which I'm not very patient at as I am a fixer) to someone in need, etc. in La Selva Beach Re: Re: Digest Number 4256 We have to make the best of what we have and find ways to live with it. I agree, but I would add, continue to explore ways to maximize my health. Fortunately, being sick doesn't completely eliminate the possibility of experiencing the real important things in life such as joy, and love. I am working at maximizing that, too. Adrienne Quote Link to comment Share on other sites More sharing options...
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