Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 You will get posts from people with a whole lot more technical and depth experience than I can provide....... but I had severe atopic eczema from birth to twenty years so I can commiserate with you. A book you might find helpful re the brain issues is The Edge Effect, Braverman MD he provides specifics on how to improve brain function. I do not notice Magnesium and B complex in your supplements. These are critical for both brain and cardiac function. With your touchy gut, getting enough Magnesium via supplement can be a challenge as loose stools want to be avoided. I've posted a list of high Magnesium foods..... millet being one of them. Sublingual or transdermal Mg may be the route for you. SAM-e, an amino acid, may provide a whole lot of support. FIsh oil needs to be about 9 grams a day and every day, not now and then, but consistently. ANother fat important for good brain function is found in virgin coconut oil. By the way, orange juice has a good amount of both potassium and magnesium. As a child, I was very allergic to oranges.... but not to lemons and grapegruit. Think about that. mjh " The Basil Book " _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) Posted by: " " _einfachzumerken@... _ (mailto:einfachzumerken@...?Subject=Re: What%20should%20I%20do%20next?) _notmyd4y _ (notmyd4y) Sun Aug 27, 2006 1:45 am (PST) First of all I¡¦m very happy to have found this group. There are so many interesting people, news, articles, discussions, tips and opinions. However at the moment I¡¦m not able to get through all of this and by that I don¡¦t know what step to take next. Like many of us I don¡¦t have a good doctor. As a result of that I want to ask you for help. I¡¦m sure it is somewhat annoying to read individual symptoms and to give advice you already gave lots of times here. However I would really appreciate it if someone could tell me what she or he thinks about my symptoms, possible diagnoses and possible treatments. Right at the moment I have two things in mind, one is impedance cardiography the other is SNP Panel I. Especially to those who already did impedance cardiography or SNP I, what changed after you got the results? What were the first things you did or possible treatments? Do you feel better now? Do you think it was worth it? Do doctors recognize diastolic cardiomyopathy as an illness? Do they know that a lower cardiac output can lead to all the symptoms Cheney talks about? My data: Age: 22 Gender: male Weight: 120 pounds Height: 6,1 feet Symptoms: - fatigue (not housebound) - bad concentration/- bad concen- bad concentration/<WBR>retentivenes Tyrosine against it) - light/noise sensitivity, people are irritating to me (probably due to low threshold potentials. I take magnesium malate twice a day against it) - chronic sore throat, swollen eyes, huffed nose - low stomach acid, low digestive enzymes, Leaky Gut Syndrome „³ strong digestion problems (I take Enzymes, HCL Betaine, Glutamine) - food intolerances (especially against high glycemic index foods, milk, nuts and of course suger. I try to eat low carb. if I eat wrong foods I get strong atopic eczema. I have no problems with protein.) - low heat/cold resistance (heat is worse) - mercury has probably played a role in the development of CFS for me, that¡¦s why I let remove all of my 8 amalgam fillings by a specialist (magnesium was low, selenium also, homocystein was increased „³ I take whey protein, nac, glutamine and some molybdenum in order to detoxify) I take Whey protein and NAC in order to increase glutathione, moreover I take a couple of grams of calcium ascorbate and some Vitamin E every now and then, in addition to that I take NADH and some folic acid. I take melatonin only when I can¡¦t sleep. My cognitive impairment only seems to improve a little when I take fish oil but not always. The cognitive impairment is my biggest problem. I had to pause my studies and I¡¦m not able to resume them as long as this problem exists. It¡¦s really hard to describe but I think many of you know what I mean when I speak of cognitive impairment, processing speed, brain fog etc. Someone described it pretty good by saying it¡¦s like waking up of narcosis and getting stuck there. I have absolutely no pain at all. Two times I thought I had found the solution to my problems. The first time was when we had friends at our house and my mother pressed some fresh orange juice. I drank about 5 glasses because it tasted so good. In this night I could sleep well, my nose was not blocked, my eyes were not swollen in the morning and I felt so good. My brain was working much better and I was sure that if I could keep this process up I would get healthy again in some months. I drank lots of orange juice again but on day 2 or 3 there was absolutely no reaction, eyes were swollen (probably due to atopic eczema and MCS, I have itching eyes all the time, no matter in which house I sleep, it is worse in some rooms but it certainly has to do with food intolerances, it gets worse if I eat wrong foods) again and I felt as bad as always. I took some antihistaminics but they were of no use. The second time was 2 days after I got the rest of my amalgam tooth fillings removed. I bought some Whey protein, Vitamin C and E, Coenzyme Q10. On day 2 I felt even better as I did on the first time. I had so much energy I even was windsurfing for 2 hours. I was so optimistic to get healthy again. My brain did so well, for the first time in some years I was able to feel in what moods people were and have great conversations with them. I knew what they wanted to talk about and I had no problem adapting to it. I could write important letters for university. I had my normal life back. It was really great. But again this effect lasted about 2 days. I could not reproduce it. Like a car with no fuel. You buy some fuel, drive 1-2 days and maybe because you have no cooling water the car overheats and you are there where you started also fuel is not more the problem. I¡¦m looking forward to reading your comments. Greets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 Hi , This list goes through many phases of many approaches and people are doing a variety of protocols and combinations of protocols. Most of us are taking things that overlap with others, whatever their main approach is. I am in a much later stage than you so I have accumulated quite a bit of neurological and other damage over the years. I am thinking you will be able to avoid this, no matter which approach you take because so much more is known now, and there are many more people's experience to draw from. I have tried some things on my own through the years, with some good results, but usually will look things up that have helped the most people, or with the closest symptoms to mine. Sort of take a consensus of results you might say. Then use that and intuition to make my decisions. This has been a good approach for me, to avoid treatments that can cause setbacks, damage, or lead to dead-ends. In the early years, I took pretty high dose Acyclovir for awhile, which is what broke my pattern of daily sore throats. If I take a short dose now, it can kick start systems out of pretty messed up place For heat, and preferably daily for several reasons, Gookinaid has been a great tool. Others make a " homebrew " or I think Blasi Recup for the same reasons. For sensory overload, I take about 1/2 of Klonopin at night and sometimes 1/4 in day. Dr. Cheney says that it is neuroprotective and keeps the neurons from overfiring/getting fried. I really have brain problems if I skip the night dose. It's a very potent drug, especially at " normal " doses, tho and takes careful thought , as it is hell to withdraw from if taking much of it. He also recommends a couple of drops of Doxepin at night as a histamine blocker. (Histamine may be causing your itching and swelling). I have never stuck with it for long, but may try again soon. IM B-12 helps to detox the brain and has helped my brain fog and energy. I also do Magnesium shots daily, mixed with Taurine. MG in all forms is great for heart, muscles and other things. I did have the Impedance Echocardiogram, administered by Dr. Cheney in 2005. The tests showed the Diastolic Dysfunction/Cardiomyopathy that he is finding in over 90% of his patients. He has been testing, studying and treating this for about a year and a half. (and CFS patients for over 20 years). He began the current cardiac after seeing the papers from the NIH Cardio studies of Natleson and Peckerman. Several CFS Cardio papers are posted on the website of the ME Society of America. I had already been doing some of the things he has talked about over the years, including whey to raise glutathione. Which ones do you take? The most potent are ImmunoPro and RenewPro, both made by WellWisdom. AS you may have seen, taking non-denatured whey is important. He believes the Cardiac problems are from low cellular energy, and different from best known DD. I have been treating the Cardiomyopathy for over a year, and am definitely better in that area. I have done this from a variety of angles. Mainly in the Category of improving microcirculation, which affects all organ and tissue of body. Dr. Cheney told me to take 1 Idebenone for every Coq10, because alone it can actually stir up free radicals. You can google the 2 together or search these archives for more explanation. So far. no one is having any luck with local Cardiologists, either in getting the tests, or haveing them administered properly. Diastolic Dysfunction is a newer field, and not the kind we have. The Impedance machine is only 5 years old. So only techs and MDs recently out of school have trained on it. One thing to try is find who is teaching it in Med School, then go to their recently graduated students. They would know the field somewhat and might be more open/ Dr. Cheney is giving a lecture soon, with updated report. Someone may post notes and there will be DVDs made. He will share what's been happening in his cell signal study and patient results. . Did you get his video of June 05 lecture? Hawthorne directly targets the heart and detoxes heavy metals. I take Boluoke to break up fibrin in the blood. Have you had that tested? Other people here can better compare alot of notes on food allergies. I have had the same temporary boost from several things you named. {That's actually a common story...temporary boost in this disease.} I switch between juices...OJ, vegie, like carrot. I'm working on many areas with many many treatments, so these are just a few. My brain is very screwy right now and fading ..I hope this makes sense. Katrina > > First of all I¡¦m very happy to have found this group. > There are so many interesting people, news, articles, discussions, > tips and opinions. > However at the moment I¡¦m not able to get through all of this and by > that I don¡¦t know what step to take next. Like many of us I don¡¦t > have a good doctor. > As a result of that I want to ask you for help. I¡¦m sure it is > somewhat annoying to read individual symptoms and to give advice you > already gave lots of times here. However I would really appreciate > it if someone could tell me what she or he thinks about my symptoms, > possible diagnoses and possible treatments. > Right at the moment I have two things in mind, one is impedance > cardiography the other is SNP Panel I. > Especially to those who already did impedance cardiography or SNP I, > what changed after you got the results? What were the first things > you did or possible treatments? Do you feel better now? Do you think > it was worth it? Do doctors recognize diastolic cardiomyopathy as an > illness? Do they know that a lower cardiac output can lead to all > the symptoms Cheney talks about? > > > My data: > > Age: 22 > Gender: male > Weight: 120 pounds > Height: 6,1 feet > > Symptoms: > - fatigue (not housebound) > - bad concentration/retentiveness/apprehension (I take Omega 3¡¦s and > Tyrosine against it) > - light/noise sensitivity, people are irritating to me (probably due > to low threshold potentials. I take magnesium malate > twice a day against it) > - chronic sore throat, swollen eyes, huffed nose > - low stomach acid, low digestive enzymes, Leaky Gut Syndrome „³ > strong digestion problems (I take Enzymes, HCL Betaine, Glutamine) > - food intolerances (especially against high glycemic index foods, > milk, nuts and of course suger. I try to eat low carb. if I eat > wrong foods I get strong atopic eczema. I have no problems with > protein.) > - low heat/cold resistance (heat is worse) > - mercury has probably played a role in the development of CFS for > me, that¡¦s why I let remove all of my 8 amalgam fillings by a > specialist (magnesium was low, selenium also, homocystein was > increased „³ I take whey protein, nac, glutamine and some molybdenum > in order to detoxify) > > I take Whey protein and NAC in order to increase glutathione, > moreover I take a couple of grams of calcium ascorbate and some > Vitamin E every now and then, in addition to that I take NADH and > some folic acid. I take melatonin only when I can¡¦t sleep. > My cognitive impairment only seems to improve a little when I take > fish oil but not always. > > > The cognitive impairment is my biggest problem. I had to pause my > studies and I¡¦m not able to resume them as long as this problem > exists. It¡¦s really hard to describe but I think many of you know > what I mean when I speak of cognitive impairment, processing speed, > brain fog etc. Someone described it pretty good by saying it¡¦s like > waking up of narcosis and getting stuck there. > I have absolutely no pain at all. > Two times I thought I had found the solution to my problems. The > first time was when we had friends at our house and my mother > pressed some fresh orange juice. I drank about 5 glasses because it > tasted so good. In this night I could sleep well, my nose was not > blocked, my eyes were not swollen in the morning and I felt so good. > My brain was working much better and I was sure that if I could keep > this process up I would get healthy again in some months. I drank > lots of orange juice again but on day 2 or 3 there was absolutely no > reaction, eyes were swollen (probably due to atopic eczema and MCS, > I have itching eyes all the time, no matter in which house I sleep, > it is worse in some rooms but it certainly has to do with food > intolerances, it gets worse if I eat wrong foods) again and I felt > as bad as always. I took some antihistaminics but they were of no > use. > The second time was 2 days after I got the rest of my amalgam tooth > fillings removed. I bought some Whey protein, Vitamin C and E, > Coenzyme Q10. On day 2 I felt even better as I did on the first > time. I had so much energy I even was windsurfing for 2 hours. I was > so optimistic to get healthy again. My brain did so well, for the > first time in some years I was able to feel in what moods people > were and have great conversations with them. I knew what they wanted > to talk about and I had no problem adapting to it. I could write > important letters for university. I had my normal life back. It was > really great. But again this effect lasted about 2 days. I could not > reproduce it. > Like a car with no fuel. You buy some fuel, drive 1-2 days and maybe > because you have no cooling water the car overheats and you are > there where you started also fuel is not more the problem. > I¡¦m looking forward to reading your comments. > > Greets > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 -2 things you didn't mention, how long have you had 'CFS' and did you lose weight? 6 feet and 120 lbs. sounds really underweight. I am 125 pounds (up from 115) but I am only 5' 9 " (I lost 40 lbs.). Also, juicing has helped many w/ digestive problems as well as made them feel better. If you have had some success w/ the orange juice, you might want to try carrot and other juices although u may lose more weight temporarily. Just Google 'juicing' for more info. Finally, the Yasko protocol and genetic testing are recent threads on this list. There has been some success w/ her treatments, but it could be that she is the 'flavor of the month' and in another 2-3 months some other treatments will become the topic of choice on this list. However, I truly hope Yasko develops into a treatment protocol that helps a lot of us greatly. Mike C (also, are u saying you have post-exertional fatigue?) In , " " <einfachzumerken@...> wrote: > > First of all I¡¦m very happy to have found this group. > There are so many interesting people, news, articles, discussions, > tips and opinions. > However at the moment I¡¦m not able to get through all of this and by > that I don¡¦t know what step to take next. Like many of us I don¡¦t > have a good doctor. > As a result of that I want to ask you for help. I¡¦m sure it is > somewhat annoying to read individual symptoms and to give advice you > already gave lots of times here. However I would really appreciate > it if someone could tell me what she or he thinks about my symptoms, > possible diagnoses and possible treatments. > Right at the moment I have two things in mind, one is impedance > cardiography the other is SNP Panel I. >snip<< > > My data: > > Age: 22 > Gender: male > Weight: 120 pounds > Height: 6,1 feet > > Symptoms: > - fatigue (not housebound) > - bad concentration/retentiveness/apprehension (I take Omega 3¡¦s and > Tyrosine against it) > - light/noise sensitivity, people are irritating to me (probably due > to low threshold potentials. I take magnesium malate > twice a day against it) > - chronic sore throat, swollen eyes, huffed nose > - low stomach acid, low digestive enzymes, Leaky Gut Syndrome „³ > strong digestion problems (I take Enzymes, HCL Betaine, Glutamine) > - food intolerances (especially against high glycemic index foods, > milk, nuts and of course suger. I try to eat low carb. if I eat > wrong foods I get strong atopic eczema. I have no problems with > protein.) > - low heat/cold resistance (heat is worse) > - mercury has probably played a role in the development of CFS for > me, that¡¦s why I let remove all of my 8 amalgam fillings by a > specialist (magnesium was low, selenium also, homocystein was > increased „³ I take whey protein, nac, glutamine and some molybdenum > in order to detoxify) > > I take Whey protein and NAC in order to increase glutathione, >snip<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2006 Report Share Posted August 27, 2006 It sounds like you might get a lot out of a book called " Mold Warriors " by Dr. Rich Shoemaker. Amazon's got it. Start there. You don't say where you live; but if you tell us that, we might also be able to point you to a knowledgeable doctor. Sara On Aug 27, 2006, at 1:45 AM, wrote: > First of all I¡¦m very happy to have found this group. > There are so many interesting people, news, articles, discussions, > tips and opinions. > However at the moment I¡¦m not able to get through all of this and by > that I don¡¦t know what step to take next. Like many of us I don¡¦t > have a good doctor. > As a result of that I want to ask you for help. I¡¦m sure it is > somewhat annoying to read individual symptoms and to give advice you > already gave lots of times here. However I would really appreciate > it if someone could tell me what she or he thinks about my symptoms, > possible diagnoses and possible treatments. > Right at the moment I have two things in mind, one is impedance > cardiography the other is SNP Panel I. > Especially to those who already did impedance cardiography or SNP I, > what changed after you got the results? What were the first things > you did or possible treatments? Do you feel better now? Do you think > it was worth it? Do doctors recognize diastolic cardiomyopathy as an > illness? Do they know that a lower cardiac output can lead to all > the symptoms Cheney talks about? > > > My data: > > Age: 22 > Gender: male > Weight: 120 pounds > Height: 6,1 feet > > Symptoms: > - fatigue (not housebound) > - bad concentration/retentiveness/apprehension (I take Omega 3¡¦s and > Tyrosine against it) > - light/noise sensitivity, people are irritating to me (probably due > to low threshold potentials. I take magnesium malate > twice a day against it) > - chronic sore throat, swollen eyes, huffed nose > - low stomach acid, low digestive enzymes, Leaky Gut Syndrome „³ > strong digestion problems (I take Enzymes, HCL Betaine, Glutamine) > - food intolerances (especially against high glycemic index foods, > milk, nuts and of course suger. I try to eat low carb. if I eat > wrong foods I get strong atopic eczema. I have no problems with > protein.) > - low heat/cold resistance (heat is worse) > - mercury has probably played a role in the development of CFS for > me, that¡¦s why I let remove all of my 8 amalgam fillings by a > specialist (magnesium was low, selenium also, homocystein was > increased „³ I take whey protein, nac, glutamine and some molybdenum > in order to detoxify) > > I take Whey protein and NAC in order to increase glutathione, > moreover I take a couple of grams of calcium ascorbate and some > Vitamin E every now and then, in addition to that I take NADH and > some folic acid. I take melatonin only when I can¡¦t sleep. > My cognitive impairment only seems to improve a little when I take > fish oil but not always. > > > The cognitive impairment is my biggest problem. I had to pause my > studies and I¡¦m not able to resume them as long as this problem > exists. It¡¦s really hard to describe but I think many of you know > what I mean when I speak of cognitive impairment, processing speed, > brain fog etc. Someone described it pretty good by saying it¡¦s like > waking up of narcosis and getting stuck there. > I have absolutely no pain at all. > Two times I thought I had found the solution to my problems. The > first time was when we had friends at our house and my mother > pressed some fresh orange juice. I drank about 5 glasses because it > tasted so good. In this night I could sleep well, my nose was not > blocked, my eyes were not swollen in the morning and I felt so good. > My brain was working much better and I was sure that if I could keep > this process up I would get healthy again in some months. I drank > lots of orange juice again but on day 2 or 3 there was absolutely no > reaction, eyes were swollen (probably due to atopic eczema and MCS, > I have itching eyes all the time, no matter in which house I sleep, > it is worse in some rooms but it certainly has to do with food > intolerances, it gets worse if I eat wrong foods) again and I felt > as bad as always. I took some antihistaminics but they were of no > use. > The second time was 2 days after I got the rest of my amalgam tooth > fillings removed. I bought some Whey protein, Vitamin C and E, > Coenzyme Q10. On day 2 I felt even better as I did on the first > time. I had so much energy I even was windsurfing for 2 hours. I was > so optimistic to get healthy again. My brain did so well, for the > first time in some years I was able to feel in what moods people > were and have great conversations with them. I knew what they wanted > to talk about and I had no problem adapting to it. I could write > important letters for university. I had my normal life back. It was > really great. But again this effect lasted about 2 days. I could not > reproduce it. > Like a car with no fuel. You buy some fuel, drive 1-2 days and maybe > because you have no cooling water the car overheats and you are > there where you started also fuel is not more the problem. > I¡¦m looking forward to reading your comments. > > Greets > > > > > > > > > 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 August 27, 2006 Report Share Posted August 27, 2006 Hi Gail, Who is the doctor you see? Thanks, Sue T Gail Ilse-Mayberry <gmilsem@...> wrote: I don't know where you live but I have a good doc in N. California USA. Gail wrote: > > First of all I¡¦m very happy to have found this group. > There are so many interesting people, news, articles, discussions, > tips and opinions. > However at the moment I¡¦m not able to get through all of this and by > that I don¡¦t know what step to take next. Like many of us I don¡¦t > have a good doctor. > As a result of that I want to ask you for help. I¡¦m sure it is > somewhat annoying to read individual symptoms and to give advice you > already gave lots of times here. However I would really appreciate > it if someone could tell me what she or he thinks about my symptoms, > possible diagnoses and possible treatments. > Right at the moment I have two things in mind, one is impedance > cardiography the other is SNP Panel I. > Especially to those who already did impedance cardiography or SNP I, > what changed after you got the results? What were the first things > you did or possible treatments? Do you feel better now? Do you think > it was worth it? Do doctors recognize diastolic cardiomyopathy as an > illness? Do they know that a lower cardiac output can lead to all > the symptoms Cheney talks about? > > My data: > > Age: 22 > Gender: male > Weight: 120 pounds > Height: 6,1 feet > > Symptoms: > - fatigue (not housebound) > - bad concentration/retentiveness/apprehension (I take Omega 3¡¦s and > Tyrosine against it) > - light/noise sensitivity, people are irritating to me (probably due > to low threshold potentials. I take magnesium malate > twice a day against it) > - chronic sore throat, swollen eyes, huffed nose > - low stomach acid, low digestive enzymes, Leaky Gut Syndrome „³ > strong digestion problems (I take Enzymes, HCL Betaine, Glutamine) > - food intolerances (especially against high glycemic index foods, > milk, nuts and of course suger. I try to eat low carb. if I eat > wrong foods I get strong atopic eczema. I have no problems with > protein.) > - low heat/cold resistance (heat is worse) > - mercury has probably played a role in the development of CFS for > me, that¡¦s why I let remove all of my 8 amalgam fillings by a > specialist (magnesium was low, selenium also, homocystein was > increased „³ I take whey protein, nac, glutamine and some molybdenum > in order to detoxify) > > I take Whey protein and NAC in order to increase glutathione, > moreover I take a couple of grams of calcium ascorbate and some > Vitamin E every now and then, in addition to that I take NADH and > some folic acid. I take melatonin only when I can¡¦t sleep. > My cognitive impairment only seems to improve a little when I take > fish oil but not always. > > The cognitive impairment is my biggest problem. I had to pause my > studies and I¡¦m not able to resume them as long as this problem > exists. It¡¦s really hard to describe but I think many of you know > what I mean when I speak of cognitive impairment, processing speed, > brain fog etc. Someone described it pretty good by saying it¡¦s like > waking up of narcosis and getting stuck there. > I have absolutely no pain at all. > Two times I thought I had found the solution to my problems. The > first time was when we had friends at our house and my mother > pressed some fresh orange juice. I drank about 5 glasses because it > tasted so good. In this night I could sleep well, my nose was not > blocked, my eyes were not swollen in the morning and I felt so good. > My brain was working much better and I was sure that if I could keep > this process up I would get healthy again in some months. I drank > lots of orange juice again but on day 2 or 3 there was absolutely no > reaction, eyes were swollen (probably due to atopic eczema and MCS, > I have itching eyes all the time, no matter in which house I sleep, > it is worse in some rooms but it certainly has to do with food > intolerances, it gets worse if I eat wrong foods) again and I felt > as bad as always. I took some antihistaminics but they were of no > use. > The second time was 2 days after I got the rest of my amalgam tooth > fillings removed. I bought some Whey protein, Vitamin C and E, > Coenzyme Q10. On day 2 I felt even better as I did on the first > time. I had so much energy I even was windsurfing for 2 hours. I was > so optimistic to get healthy again. My brain did so well, for the > first time in some years I was able to feel in what moods people > were and have great conversations with them. I knew what they wanted > to talk about and I had no problem adapting to it. I could write > important letters for university. I had my normal life back. It was > really great. But again this effect lasted about 2 days. I could not > reproduce it. > Like a car with no fuel. You buy some fuel, drive 1-2 days and maybe > because you have no cooling water the car overheats and you are > there where you started also fuel is not more the problem. > I¡¦m looking forward to reading your comments. > > Greets > > > > 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 August 27, 2006 Report Share Posted August 27, 2006 hi: i'd like to know who the doc is in n. calif. too. tx, lisa > > > > First of all I¡¦m very happy to have found this group. > > There are so many interesting people, news, articles, discussions, > > tips and opinions. > > However at the moment I¡¦m not able to get through all of this and by > > that I don¡¦t know what step to take next. Like many of us I don¡¦t > > have a good doctor. > > As a result of that I want to ask you for help. I¡¦m sure it is > > somewhat annoying to read individual symptoms and to give advice you > > already gave lots of times here. However I would really appreciate > > it if someone could tell me what she or he thinks about my symptoms, > > possible diagnoses and possible treatments. > > Right at the moment I have two things in mind, one is impedance > > cardiography the other is SNP Panel I. > > Especially to those who already did impedance cardiography or SNP I, > > what changed after you got the results? What were the first things > > you did or possible treatments? Do you feel better now? Do you think > > it was worth it? Do doctors recognize diastolic cardiomyopathy as an > > illness? Do they know that a lower cardiac output can lead to all > > the symptoms Cheney talks about? > > > > My data: > > > > Age: 22 > > Gender: male > > Weight: 120 pounds > > Height: 6,1 feet > > > > Symptoms: > > - fatigue (not housebound) > > - bad concentration/retentiveness/apprehension (I take Omega 3¡¦s and > > Tyrosine against it) > > - light/noise sensitivity, people are irritating to me (probably due > > to low threshold potentials. I take magnesium malate > > twice a day against it) > > - chronic sore throat, swollen eyes, huffed nose > > - low stomach acid, low digestive enzymes, Leaky Gut Syndrome „³ > > strong digestion problems (I take Enzymes, HCL Betaine, Glutamine) > > - food intolerances (especially against high glycemic index foods, > > milk, nuts and of course suger. I try to eat low carb. if I eat > > wrong foods I get strong atopic eczema. I have no problems with > > protein.) > > - low heat/cold resistance (heat is worse) > > - mercury has probably played a role in the development of CFS for > > me, that¡¦s why I let remove all of my 8 amalgam fillings by a > > specialist (magnesium was low, selenium also, homocystein was > > increased „³ I take whey protein, nac, glutamine and some molybdenum > > in order to detoxify) > > > > I take Whey protein and NAC in order to increase glutathione, > > moreover I take a couple of grams of calcium ascorbate and some > > Vitamin E every now and then, in addition to that I take NADH and > > some folic acid. I take melatonin only when I can¡¦t sleep. > > My cognitive impairment only seems to improve a little when I take > > fish oil but not always. > > > > The cognitive impairment is my biggest problem. I had to pause my > > studies and I¡¦m not able to resume them as long as this problem > > exists. It¡¦s really hard to describe but I think many of you know > > what I mean when I speak of cognitive impairment, processing speed, > > brain fog etc. Someone described it pretty good by saying it¡¦s like > > waking up of narcosis and getting stuck there. > > I have absolutely no pain at all. > > Two times I thought I had found the solution to my problems. The > > first time was when we had friends at our house and my mother > > pressed some fresh orange juice. I drank about 5 glasses because it > > tasted so good. In this night I could sleep well, my nose was not > > blocked, my eyes were not swollen in the morning and I felt so good. > > My brain was working much better and I was sure that if I could keep > > this process up I would get healthy again in some months. I drank > > lots of orange juice again but on day 2 or 3 there was absolutely no > > reaction, eyes were swollen (probably due to atopic eczema and MCS, > > I have itching eyes all the time, no matter in which house I sleep, > > it is worse in some rooms but it certainly has to do with food > > intolerances, it gets worse if I eat wrong foods) again and I felt > > as bad as always. I took some antihistaminics but they were of no > > use. > > The second time was 2 days after I got the rest of my amalgam tooth > > fillings removed. I bought some Whey protein, Vitamin C and E, > > Coenzyme Q10. On day 2 I felt even better as I did on the first > > time. I had so much energy I even was windsurfing for 2 hours. I was > > so optimistic to get healthy again. My brain did so well, for the > > first time in some years I was able to feel in what moods people > > were and have great conversations with them. I knew what they wanted > > to talk about and I had no problem adapting to it. I could write > > important letters for university. I had my normal life back. It was > > really great. But again this effect lasted about 2 days. I could not > > reproduce it. > > Like a car with no fuel. You buy some fuel, drive 1-2 days and maybe > > because you have no cooling water the car overheats and you are > > there where you started also fuel is not more the problem. > > I¡¦m looking forward to reading your comments. > > > > Greets > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Thanks for your great answer, Katrina. > Sort of take a consensus of results you might say. > Then use that and intuition to make my decisions. This has been a >good approach for me, to avoid treatments that can cause setbacks, >damage, or lead to dead-ends. That is a very good advice I think. > In the early years, I took pretty high dose Acyclovir for awhile, which is what broke my pattern of daily sore throats. > If I take a short dose now, it can kick start systems out of pretty messed up place > I will have a look. > For heat, and preferably daily for several reasons, Gookinaid has been a great tool. Others make a " homebrew " or I think Blasi Recup for the same reasons. > I already read about Gookinaid and " homebrew " . Dr. Cheney recommends it and I will definetly give it a try. > For sensory overload, I take about 1/2 of Klonopin at night and sometimes 1/4 in day. Dr. Cheney says that it is neuroprotective and keeps the neurons from overfiring/getting fried. I really have brain problems if I skip the night dose. It's a very potent drug, especially at " normal " doses, tho and takes careful thought , as it is hell to withdraw from if taking much of it. > I guess you need a prescription for it. I hate going to doctors I cannot concentrate and always get into discussions with them. Here in Germany there is not one doctor who knows something about CFS. > He also recommends a couple of drops of Doxepin at night as a histamine blocker. (Histamine may be causing your itching and swelling). I have never stuck with it for long, but may try again soon. > I tried histamine blocker but they were not of great use for me. However I will give it another try wth another histamine blocker. > IM B-12 helps to detox the brain and has helped my brain fog and energy. > > I also do Magnesium shots daily, mixed with Taurine. MG in all forms is great for heart, muscles and other things. > I'd love to do B-12 and magnesium/taurine shots but there is no doctor who would prescribe it to me. > I did have the Impedance Echocardiogram, administered by Dr. Cheney in 2005. The tests showed the Diastolic Dysfunction/Cardiomyopathy that he is finding in over 90% of his patients. He has been testing, studying and treating this for about a year and a half. (and CFS patients for over 20 years). > He began the current cardiac after seeing the papers from the NIH Cardio studies of Natleson and Peckerman. > Several CFS Cardio papers are posted on the website of the ME Society of America. > I will take a look at the ME site. I already printed the NIH studie and will show it to the cardiologist. > I had already been doing some of the things he has talked about over the years, including whey to raise glutathione. Which ones do you take? The most potent are ImmunoPro and RenewPro, both made by WellWisdom. AS you may have seen, taking non-denatured whey is important. > At the moment I take Pro Star Whey protein. They say it's produced under low tmperature but ImmunoPro is a much better choice I think. > He believes the Cardiac problems are from low cellular energy, and different from best known DD. > I have been treating the Cardiomyopathy for over a year, and am definitely better in that area. > I have done this from a variety of angles. Mainly in the Category of improving microcirculation, which affects all organ and tissue of body. > How did you improve microcirculation and what else did you do to treat Cardiomyopathy? > So far. no one is having any luck with local Cardiologists, either in getting the tests, or haveing them administered properly. Diastolic Dysfunction is a newer field, and not the kind we have. The Impedance machine is only 5 years old. So only techs and MDs recently out of school have trained on it. > One thing to try is find who is teaching it in Med School, then go to their recently graduated students. > They would know the field somewhat and might be more open/ My father knows a very good cardiologist. I hope he is able to do the diagnosis but we will see. > Dr. Cheney is giving a lecture soon, with updated report. Someone may post notes and there will be DVDs made. He will share what's been happening in his cell signal study and patient results. . > Did you get his video of June 05 lecture? I'm looking forward to seeing the notes and I definetly will buy the DVD. I'd really love to be on that lecture. > Hawthorne directly targets the heart and detoxes heavy metals. > > I take Boluoke to break up fibrin in the blood. Have you had that tested? Not yet. > Other people here can better compare alot of notes on food allergies. > > I have had the same temporary boost from several things you named. {That's actually a common story...temporary boost in this disease.} > > I switch between juices...OJ, vegie, like carrot. > > I'm working on many areas with many many treatments, so these are just a few. > > My brain is very screwy right now and fading ..I hope this makes sense. > > Katrina Well again thanks for your time and the good advice you gave me. It all made sense to me :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Thanks for your answer and your recommendations. How are you doing by the way? Did the symptoms improve? To what degreee? I really consider buying the book (The Edge Effect). Magnesium is crucial. I take Magenisum malate once or twice a day. I'd prefer to get magensium/taurine shots but that is not possible at the moment because I don't have a doctor who would listen to me when I talk about CFS. Good to know that it is necessary to take fish oil every day. I will stick to that. The problem I have with fruits is that they cause atopic ezcema maybe because of the sugar or the acid. Greets > > > > You will get posts from people with a whole lot more technical and depth > experience than I can provide....... but I had severe atopic eczema from birth > to twenty years so I can commiserate with you. > > A book you might find helpful re the brain issues is > The Edge Effect, Braverman MD he provides specifics on how to improve > brain function. > > I do not notice Magnesium and B complex in your supplements. These are > critical for both brain and cardiac function. With your touchy gut, getting > enough Magnesium via supplement can be a challenge as loose stools want to be > avoided. I've posted a list of high Magnesium foods..... millet being one of > them. Sublingual or transdermal Mg may be the route for you. > > SAM-e, an amino acid, may provide a whole lot of support. > > FIsh oil needs to be about 9 grams a day and every day, not now and then, > but consistently. > > ANother fat important for good brain function is found in virgin coconut oil. > > By the way, orange juice has a good amount of both potassium and magnesium. > As a child, I was very allergic to oranges.... but not to lemons and > grapegruit. Think about that. > > mjh > " The Basil Book " > _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi! Well for me it wasn't one special day where everything started. It was a very slow process beginning at puberty. Since 2001 things got really worse then. First brain then strong digestive problems. I had an EBV infection before. I lost 30 pounds. It was a catastrophy. I hope Dr. Cheney and/or Dr. Yasko find a way of treatment. I have post-exertional fatigue most of the time but there are definetly hours where I feel a little better (like a spark of energy) and I don't have post-exertional fatigue to a certain degree. If I go over the top I'm exhausted for the rest of the day and have a 50% chance of getting ill the following day. Thanks for your answer, I google " juicing " now :-) > > > > First of all I¡¦m very happy to have found this group. > > There are so many interesting people, news, articles, discussions, > > tips and opinions. > > However at the moment I¡¦m not able to get through all of this and > by > > that I don¡¦t know what step to take next. Like many of us I > don¡¦t > > have a good doctor. > > As a result of that I want to ask you for help. I¡¦m sure it is > > somewhat annoying to read individual symptoms and to give advice > you > > already gave lots of times here. However I would really appreciate > > it if someone could tell me what she or he thinks about my > symptoms, > > possible diagnoses and possible treatments. > > Right at the moment I have two things in mind, one is impedance > > cardiography the other is SNP Panel I. > >snip<< > > > > My data: > > > > Age: 22 > > Gender: male > > Weight: 120 pounds > > Height: 6,1 feet > > > > Symptoms: > > - fatigue (not housebound) > > - bad concentration/retentiveness/apprehension (I take Omega 3¡¦s > and > > Tyrosine against it) > > - light/noise sensitivity, people are irritating to me (probably > due > > to low threshold potentials. I take magnesium malate > > twice a day against it) > > - chronic sore throat, swollen eyes, huffed nose > > - low stomach acid, low digestive enzymes, Leaky Gut Syndrome „³ > > strong digestion problems (I take Enzymes, HCL Betaine, Glutamine) > > - food intolerances (especially against high glycemic index foods, > > milk, nuts and of course suger. I try to eat low carb. if I eat > > wrong foods I get strong atopic eczema. I have no problems with > > protein.) > > - low heat/cold resistance (heat is worse) > > - mercury has probably played a role in the development of CFS for > > me, that¡¦s why I let remove all of my 8 amalgam fillings by a > > specialist (magnesium was low, selenium also, homocystein was > > increased „³ I take whey protein, nac, glutamine and some > molybdenum > > in order to detoxify) > > > > I take Whey protein and NAC in order to increase glutathione, > >snip<< > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 MAnuel, You dismiss the B12 too easily! It took me years to find a doc to prescribe it, and not being more persistant in my search for one was one of the biggest mistakes I have made in the course of this illness. Only when I started fearing dementia did I act adequately. There is documention for its use-in our disorder and others and that would help. If your father has a personal connection to the cardiologist, maybe he will listen, and check out the documentation. Adrienne Re: What should I do next? Thanks for your great answer, Katrina. > Sort of take a consensus of results you might say. > Then use that and intuition to make my decisions. This has been a >good approach for me, to avoid treatments that can cause setbacks, >damage, or lead to dead-ends. That is a very good advice I think. > In the early years, I took pretty high dose Acyclovir for awhile, which is what broke my pattern of daily sore throats. > If I take a short dose now, it can kick start systems out of pretty messed up place > I will have a look. > For heat, and preferably daily for several reasons, Gookinaid has been a great tool. Others make a " homebrew " or I think Blasi Recup for the same reasons. > I already read about Gookinaid and " homebrew " . Dr. Cheney recommends it and I will definetly give it a try. > For sensory overload, I take about 1/2 of Klonopin at night and sometimes 1/4 in day. Dr. Cheney says that it is neuroprotective and keeps the neurons from overfiring/getting fried. I really have brain problems if I skip the night dose. It's a very potent drug, especially at " normal " doses, tho and takes careful thought , as it is hell to withdraw from if taking much of it. > I guess you need a prescription for it. I hate going to doctors I cannot concentrate and always get into discussions with them. Here in Germany there is not one doctor who knows something about CFS. > He also recommends a couple of drops of Doxepin at night as a histamine blocker. (Histamine may be causing your itching and swelling). I have never stuck with it for long, but may try again soon. > I tried histamine blocker but they were not of great use for me. However I will give it another try wth another histamine blocker. > IM B-12 helps to detox the brain and has helped my brain fog and energy. > > I also do Magnesium shots daily, mixed with Taurine. MG in all forms is great for heart, muscles and other things. > I'd love to do B-12 and magnesium/taurine shots but there is no doctor who would prescribe it to me. > I did have the Impedance Echocardiogram, administered by Dr. Cheney in 2005. The tests showed the Diastolic Dysfunction/Cardiomyopathy that he is finding in over 90% of his patients. He has been testing, studying and treating this for about a year and a half. (and CFS patients for over 20 years). > He began the current cardiac after seeing the papers from the NIH Cardio studies of Natleson and Peckerman. > Several CFS Cardio papers are posted on the website of the ME Society of America. > I will take a look at the ME site. I already printed the NIH studie and will show it to the cardiologist. > I had already been doing some of the things he has talked about over the years, including whey to raise glutathione. Which ones do you take? The most potent are ImmunoPro and RenewPro, both made by WellWisdom. AS you may have seen, taking non-denatured whey is important. > At the moment I take Pro Star Whey protein. They say it's produced under low tmperature but ImmunoPro is a much better choice I think. > He believes the Cardiac problems are from low cellular energy, and different from best known DD. > I have been treating the Cardiomyopathy for over a year, and am definitely better in that area. > I have done this from a variety of angles. Mainly in the Category of improving microcirculation, which affects all organ and tissue of body. > How did you improve microcirculation and what else did you do to treat Cardiomyopathy? > So far. no one is having any luck with local Cardiologists, either in getting the tests, or haveing them administered properly. Diastolic Dysfunction is a newer field, and not the kind we have. The Impedance machine is only 5 years old. So only techs and MDs recently out of school have trained on it. > One thing to try is find who is teaching it in Med School, then go to their recently graduated students. > They would know the field somewhat and might be more open/ My father knows a very good cardiologist. I hope he is able to do the diagnosis but we will see. > Dr. Cheney is giving a lecture soon, with updated report. Someone may post notes and there will be DVDs made. He will share what's been happening in his cell signal study and patient results. . > Did you get his video of June 05 lecture? I'm looking forward to seeing the notes and I definetly will buy the DVD. I'd really love to be on that lecture. > Hawthorne directly targets the heart and detoxes heavy metals. > > I take Boluoke to break up fibrin in the blood. Have you had that tested? Not yet. > Other people here can better compare alot of notes on food allergies. > > I have had the same temporary boost from several things you named. {That's actually a common story...temporary boost in this disease.} > > I switch between juices...OJ, vegie, like carrot. > > I'm working on many areas with many many treatments, so these are just a few. > > My brain is very screwy right now and fading ..I hope this makes sense. > > Katrina Well again thanks for your time and the good advice you gave me. It all made sense to me :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Hi Tamara, You might want to think about taking her for CBT/ERP therapy and or medications. My son (4) has the " bad thought type ocd " and my daughter (9) has ocd. It sounds like you are going to need some help hugs Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 You could increase - I am on 100 mgs. Maybe you could use the Progesterone on the breast with topical iodine. That has worked for cysts. As for energy. Are you doing the B2/B3 (aka ATP CoFactors), Selenium, Magnesium and Celtic Salt flushes? If you have a thyroid L-Tyrosine is a good supporting nutrient. Thyroid hormone is made of it. One thing to check, have your Dr run your ferritin / iron levels. Many of us found that doing higher doses of iodine seem to lower your iron levels (also ferritin). What should I do next? >I have recently started taking Iodoral again in an attempt to get rid > of my horrible fibrocystic lumps. I am up to taking 75mg divided into > 3 doses a day and for about 3 days after I started taking it I felt > great!!! I had energy and the lumps decreased a bit, but now I am > about 3 weeks into it and my energy has hit rock bottom and there has > been no more improvement in the lumps. So I am wondering if anyone has > any suggestions on how to proceed? Can I increase the Iodoral? Thanks > for any suggestions. > > > > > ------------------------------------ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Thank you for the reply! I have done the progesterone with the iodine on the lumps but the iodine irritates my skin very badly! I take Selenium and Magnesium but I have never heard of the B2/B3 combo or taken L-Tyrosine, I will look into that...always optimistic that something will work, maybe this is it!! Thanks again, > > You could increase - I am on 100 mgs. Maybe you could use the Progesterone > on the breast with topical iodine. That has worked for cysts. As for > energy. Are you doing the B2/B3 (aka ATP CoFactors), Selenium, Magnesium > and Celtic Salt flushes? If you have a thyroid L-Tyrosine is a good > supporting nutrient. Thyroid hormone is made of it. > > One thing to check, have your Dr run your ferritin / iron levels. Many of > us found that doing higher doses of iodine seem to lower your iron levels > (also ferritin). > > > > > What should I do next? > > > >I have recently started taking Iodoral again in an attempt to get rid > > of my horrible fibrocystic lumps. I am up to taking 75mg divided into > > 3 doses a day and for about 3 days after I started taking it I felt > > great!!! I had energy and the lumps decreased a bit, but now I am > > about 3 weeks into it and my energy has hit rock bottom and there has > > been no more improvement in the lumps. So I am wondering if anyone has > > any suggestions on how to proceed? Can I increase the Iodoral? Thanks > > for any suggestions. > > > > > > > > > > ------------------------------------ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 The B2/B3 info is on my website - www.naturalthyroidchoices.com under thyroid nutrients. Steph What should I do next? >> >> >> >I have recently started taking Iodoral again in an attempt to get > rid >> > of my horrible fibrocystic lumps. I am up to taking 75mg divided > into >> > 3 doses a day and for about 3 days after I started taking it I > felt >> > great!!! I had energy and the lumps decreased a bit, but now I > am >> > about 3 weeks into it and my energy has hit rock bottom and there > has >> > been no more improvement in the lumps. So I am wondering if > anyone has >> > any suggestions on how to proceed? Can I increase the Iodoral? > Thanks >> > for any suggestions. >> > >> > >> > >> > >> > ------------------------------------ >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 First, thanks to all who responded to my LLMD request - I'll be checking them out. A question: I got my Lyme about 1 1/2 years ago. I had some neurological symptoms then and was treated with oral a/b's for about 45 days. Symptoms all went away and I thought I was cured. NOT! About 7 weeks ago my symptoms came back. Extreme dizziness & fainting, foggy confusion, some temporary facial numbness, terrible pain in legs. I was put on 30 days of IV anti-biotics (rocefrin?) and " most " all of the symptoms have gone away. But I still have pretty frequent minor dizziness even a week after the IV was ended. It seems like the doc thinks this is normal or will go away. My question: Should I wait to see if the dizziness does go away - or should I try to demand further treatment (with A/B's I guess - even though I wonder if too many A/B's aren't bad for me?) Thanks for any ideas. Don Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 Greetings! My question is this and I am having a hard time getting a straight answer.... My first Lyme diagnosis was in 1999...and I believe, I have been undertreated by abx all this time...I am now doing Rife treatments and will stick with that for now. I did get tests last fall from a LLMD who confirmed the Lyme Yet, this past summer, I received a spinal tap (I was in the hospital for severe vertigo) and it came back positive for MS... Is it possible to have Lyme induced MS? I am still treating for Lyme yet, wondering how this all works together... Thank you to consider this question...and any references would be greatly appreciated.! From: Donk <d.knieriem@...> Subject: [ ] what should I do next? Date: Thursday, October 2, 2008, 11:54 PM First, thanks to all who responded to my LLMD request - I'll be checking them out. A question: I got my Lyme about 1 1/2 years ago. I had some neurological symptoms then and was treated with oral a/b's for about 45 days. Symptoms all went away and I thought I was cured. NOT! About 7 weeks ago my symptoms came back. Extreme dizziness & fainting, foggy confusion, some temporary facial numbness, terrible pain in legs. I was put on 30 days of IV anti-biotics (rocefrin?) and " most " all of the symptoms have gone away. But I still have pretty frequent minor dizziness even a week after the IV was ended. It seems like the doc thinks this is normal or will go away. My question: Should I wait to see if the dizziness does go away - or should I try to demand further treatment (with A/B's I guess - even though I wonder if too many A/B's aren't bad for me?) Thanks for any ideas. Don Quote Link to comment Share on other sites More sharing options...
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