Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 >Three months ago we went on the candida diet. No dairy except for >yogurt with live cultures, no pastas, no refined wheat products, no >yeast products, no sugar and no fruit. Seemed to help a little. Steve >is lactose intolerant and the yougurt seemed to be upsetting his >stomach and giving him wicked gas and cramping so we stopped the >yougurt since he was taking the probiotics anyway. So we wound up with >what amounts to a wheat, but not gluten free and dairy free diet. you can get soy yoghurts if he can eat soy milk. these do have probiotics-- check at the health food store if this is of interest. as you hopefully know, many probiotics are made with milk, but you CAN get milk free ones too. I don't know anything about other stuff you asked (I'm sure someone else will). Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 > you can get soy yoghurts if he can eat soy milk. these do have > probiotics-- check at the health food store if this is of interest. > as you hopefully know, many probiotics are made with milk, but > you CAN get milk free ones too. > > I don't know anything about other stuff you asked (I'm sure someone > else will). > Thanks Moira. I'd checked all the supplements to make sure they were wheat free, color/flavor, free, etc. but didn't think about checking for dairy. I just checked the probiotics and they seem to be ok. They are wheat,soy, color, flavor free and natural cultures of the bacteria in a rice maltodextrin, not corn, carrier. He's not big on dairy products anyway so I think we'll skip the soy stuff for now. Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 The limb heaviness and fatigue, as well as stomach pains are all symptoms my son had before we added B12 supplements. After a couple of weeks, these symptoms were much better:) Lust my .02 [ ] Tired all the time I can't seem to find the answer any where else so I figured ya'll maybe able to shed some light for us. We've been folling a modified Feingold diet for about a year. No preservatives, no artificial colors/flavors, etc. The salicylates in the foods didn't seem to be a problem so we added those back into the diet. Three months ago we went on the candida diet. No dairy except for yogurt with live cultures, no pastas, no refined wheat products, no yeast products, no sugar and no fruit. Seemed to help a little. Steve is lactose intolerant and the yougurt seemed to be upsetting his stomach and giving him wicked gas and cramping so we stopped the yougurt since he was taking the probiotics anyway. So we wound up with what amounts to a wheat, but not gluten free and dairy free diet. After reading last week about the gluten connection on here and in some of your links we've gone to a gluten free diet as well. The good news is his tremor in his right hand has decreased remarkably. He was actually able to use the puter and the mouse last night without tremoring. He's having increasing periods where he feels more calm and relaxed now, he can't remember when the last time was he felt this calm. BUT,(isn't there always a but?), at the same time he feels unusually tired/lethargic. He says his arms feel heavy, almost too heavy to lift. And he's been having wicked stomach pains again. Could this be from the change in diet? Will this clear up as he's on the diet for a longer period? Any help is appreciated. Thanks. Vickie ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 Hi Vickie... Could be that he's going through withdrawl from the diet change. My child regressed a bit after starting the diet and it didn't last long. I'm sure the diet he was on affected his dopamine levels based on the fact that he had tremors. But since he's started the new diet and the tremors in his hand have subsided, it seems as though the change in his dopamine levels may be triggering fatigue. Just a thought... > > you can get soy yoghurts if he can eat soy milk. these do have > > probiotics-- check at the health food store if this is of interest. > > as you hopefully know, many probiotics are made with milk, but > > you CAN get milk free ones too. > > > > I don't know anything about other stuff you asked (I'm sure someone > > else will). > > > > Thanks Moira. I'd checked all the supplements to make sure they were > wheat free, color/flavor, free, etc. but didn't think about checking > for dairy. I just checked the probiotics and they seem to be ok. They > are wheat,soy, color, flavor free and natural cultures of the bacteria > in a rice maltodextrin, not corn, carrier. > He's not big on dairy products anyway so I think we'll skip the soy > stuff for now. > > Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 > The limb heaviness and fatigue, as well as stomach pains are all symptoms my son had before we added B12 supplements. After a couple of weeks, these symptoms were much better:) > Lust my .02 Thanks, all the little .02 cents add up to a $1 and a program that works. How much B-12 is he taking? Steve is already taking B-12, 150mcg/3x day right now but maybe it's not enough for him. Not sure how much to increase it to though. It's nice to know there is somewhere we can go and get help from others who've BTDT before us. Our families and friends don't understand when we tell them Steve's having a bad day and can't lift his arms. Or why we can't just up and go do something with them on the spur of the moment anymore. That for us it takes several hours sometimes to be " spontaneous " and that's on a GOOD day, lol!! Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 > Any medication issues? Adding a medication, dropping one? > > JoAnne Nope, he's not on any prescribed meds. The PD meds made him sleep all the time and didn't stop the tremoring so he opted not to take them. Not to mention vivid hallucinations were one of the side effects. He has been on them in 3 years. And the supplements he's taking he's been taking for several months now. My gut feeling is it's something to do with the change in the diet. Either a withdrawal type thing or maybe a blood sugar level thing? But I'm not real sure. I'm going to see if eating smaller, more frequent meals helps. Thanks again everyone for your help!! Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2002 Report Share Posted April 10, 2002 Vicki, Gluten can take a while to remove from the system . I have heard many moms with chronic fatigue report major improvement on the GFCF diet and maybe this is similar. I would also test his yeast levels and see if he has an overgrowth that requires more than dietary changes. It often seems that after changing the diet that the yeast problems show themselves more and yeast can make you VERY tired as well have pain in the stomach etc. Yeast also does not allow nutrients to absorb so he could have deficiencies that make him weak. tracy [ ] Tired all the time I can't seem to find the answer any where else so I figured ya'll maybe able to shed some light for us. We've been folling a modified Feingold diet for about a year. No preservatives, no artificial colors/flavors, etc. The salicylates in the foods didn't seem to be a problem so we added those back into the diet. Three months ago we went on the candida diet. No dairy except for yogurt with live cultures, no pastas, no refined wheat products, no yeast products, no sugar and no fruit. Seemed to help a little. Steve is lactose intolerant and the yougurt seemed to be upsetting his stomach and giving him wicked gas and cramping so we stopped the yougurt since he was taking the probiotics anyway. So we wound up with what amounts to a wheat, but not gluten free and dairy free diet. After reading last week about the gluten connection on here and in some of your links we've gone to a gluten free diet as well. The good news is his tremor in his right hand has decreased remarkably. He was actually able to use the puter and the mouse last night without tremoring. He's having increasing periods where he feels more calm and relaxed now, he can't remember when the last time was he felt this calm. BUT,(isn't there always a but?), at the same time he feels unusually tired/lethargic. He says his arms feel heavy, almost too heavy to lift. And he's been having wicked stomach pains again. Could this be from the change in diet? Will this clear up as he's on the diet for a longer period? Any help is appreciated. Thanks. Vickie ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 For over a year, Mike got B12 injections every day. Then, we were able to switcg to B12 with intrinsic factor by metagenics.I think since Steve's has gotten to the point of affecting function, you should see a neurologist to rule out other things:) [ ] Re: Tired all the time > The limb heaviness and fatigue, as well as stomach pains are all symptoms my son had before we added B12 supplements. After a couple of weeks, these symptoms were much better:) > Lust my .02 Thanks, all the little .02 cents add up to a $1 and a program that works. How much B-12 is he taking? Steve is already taking B-12, 150mcg/3x day right now but maybe it's not enough for him. Not sure how much to increase it to though. It's nice to know there is somewhere we can go and get help from others who've BTDT before us. Our families and friends don't understand when we tell them Steve's having a bad day and can't lift his arms. Or why we can't just up and go do something with them on the spur of the moment anymore. That for us it takes several hours sometimes to be " spontaneous " and that's on a GOOD day, lol!! Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 > For over a year, Mike got B12 injections every day. Then, we were able to switcg to B12 with intrinsic factor by metagenics.I think since Steve's has gotten to the point of affecting function, you should see a neurologist to rule out other things:) Steve has a neurologist, he's seen a total of 3, including the top guy at Harvard's Movement Disorders Clinic. They say he has Parkinson's. They have repeatedly refused to consider anything but Parkinson's disease. They ALL refuse to believe it MIGHT be mercury poisoning since he never worked with it in an industrial setting. He has 14 LARGE amalgam fillings which were originally placed when he was 10-12 and he's now 54. They just try to push the Parkinson's meds and do their damnedest to get him into drug studies. We're in the same boat a lot of the parents on this list are in. WE are convinced it's heavy metals but no one wants to even admit it it's possible and can't find a doc who will even consider it. Right now we're trying to find a dentist in our area who will remove the fillings correctly. In the meantime we're using supplements and diet to try and get him feeling the best he can so we can start removing the fillings ASAP. We have an appointment with ANOTHER dentist today. This one seems promising so everyone keep your fingers crossed for us. We've found someone in the area who might be willing to help with the chelation once the fillings are out. Until this last week he's shown more improvement and has felt better on the diet and the supplements than he EVER felt on the Parkinson's meds. Then we went to a gf/cf diet from just a candida diet. That's why I think it's most likely diet related. Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Dear Vickie, Why dont you write J. Fox and tell him your thoughts. Make sure he gets the letter as probably the Parkinson Foundation will have made sure " their " advisors " look after " him. [ ] Re: Tired all the time > > > For over a year, Mike got B12 injections every day. Then, we were > able to switcg to B12 with intrinsic factor by metagenics.I think > since Steve's has gotten to the point of affecting function, you > should see a neurologist to rule out other things:) > > Steve has a neurologist, he's seen a total of 3, including the top guy > at Harvard's Movement Disorders Clinic. They say he has Parkinson's. > They have repeatedly refused to consider anything but Parkinson's > disease. They ALL refuse to believe it MIGHT be mercury poisoning > since he never worked with it in an industrial setting. He has 14 > LARGE amalgam fillings which were originally placed when he was 10-12 > and he's now 54. They just try to push the Parkinson's meds and do > their damnedest to get him into drug studies. We're in the same boat a > lot of the parents on this list are in. WE are convinced it's heavy > metals but no one wants to even admit it it's possible and can't find > a doc who will even consider it. Right now we're trying to find a > dentist in our area who will remove the fillings correctly. In the > meantime we're using supplements and diet to try and get him feeling > the best he can so we can start removing the fillings ASAP. We have an > appointment with ANOTHER dentist today. This one seems promising so > everyone keep your fingers crossed for us. We've found someone in the > area who might be willing to help with the chelation once the fillings > are out. > > Until this last week he's shown more improvement and has felt better > on the diet and the supplements than he EVER felt on the Parkinson's > meds. Then we went to a gf/cf diet from just a candida diet. That's > why I think it's most likely diet related. > > Vickie > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 > Dear Vickie, > > Why dont you write J. Fox and tell him your thoughts. Make sure he > gets the letter as probably the Parkinson Foundation will have made sure > " their " advisors " look after " him. > > We did write him through his foundation but I seriously doubt he'll get the letter. I'm sure the docs who talked him into having a part of his brain destroyed to " control " his tremors instead of trying to find out what causes them and fix that don't want him to know about other causes. I cannot conceive of someone having such an invasive procedure done to his brain until AFTER exploring and exhausting all other possibilities. We watched him on Larry King Live this past Monday and I must say that the visable symptoms J. Fox displays are MUCH worse than Steve's are. The only visible symptom Steve has is tremors in his right arm/hand. I can't beleive that he considers the way he is now is an improvement. Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 After reading some posts I figured I would add my 2 cents worth. I am 33 and a single mom. Until about 2 weeks ago I worked at least 40 hours a week and maintained my house. I got laid off on the 19th. I can't tell you how much I have been sleeping. It makes me wonder how the heck I worked for so long. Since I am moving in 2 months I'm not planning on looking for a new job. I am going to take the next couple of months to relax a little bit and to take my time going through stuff and packing. I have no idea how I would have accomplished every thing if I still had to work full time. Gordon said something in his post about how he's entering the final stages of his life and how he feels for those of us who are younger and having to go through all these nasty things our bodies are putting us through. I like to look at it from a different perspective. I feel for those of you who are older. I know that there will be something developed in " my time " to help ease the pain and degeneration that comes along with PA. I have time left to hold out hope. I just wish the help would come sooner so that those of you who have suffered longer would be able to enjoy it as well. Mike, as far as the zombie feeling goes...I had that also when I was on Enbrel. It has almost gone away completely since I have been off of it. I am extremely tired after I do my weekly Methotrexate injection. I do it on a Friday morning and I am pretty useless on Saturday. As for those who are afraid to ask for help...I was the same way. I had to be superwoman. I had to do everything for myself and everyone else. I now realize how dumb that was. I know have my daughter (she's 11) help and I also get some help from my friends. It's not a sign of weakness to ask for assistance. People who care about you are more than willing to help. Especially since we all know that what comes around goes around. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 : You are wise beyond your years and are a wonderful role model for your daughter. I also try to maintain your positive attitude, and usually do not succumb to the pain, tiredness and other side effects of either the disease or medications. Keep it up, from one of the " older " ones (55 and still going). Toadessa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Hiya, Leah. Looks like it's time for a complete physical workup. There are so many possible causes of tiredness. Certain medications, certain pathologies (illnesses). Make an appointment with your primary care physician. Be as specific as you can with your symptoms: what kind of tired (exhaustion, weakness, sleepiness, lack of energy), when does it happen, what medications you are taking, what supplements you are taking, what you are eating, what kind of exercise you do. Are there any other symptoms? Palpitations, arrhythmia, difficulty breathing or catching your breath, dizziness (and what kind--room spinning around, blackouts, fainting spells). If your doctor disregards your symptoms, find a new doctor. Mike Tired all the time > >Hello all: > How is everyone here? I am 26 years old and I feel very tired all >the time. I take naps during the day. My dad thinks I may be amenic. >if I am amenic what do they do for it? > Leah > > > > > > >Please visit the Zapper homepage at >http://www.ZapLife.org > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Mike is right that there are many causes of anemia and therefore many treatments. The most common cause of anemia in young women is iron deficiency anemia and iron supplements will usually be prescribed. However, extra iron won't fix an anemia that is NOT caused by iron deficiency so a visit to your doctor is certainly in order. Brenta Tired all the time>>Hello all:> How is everyone here? I am 26 years old and I feel very tired all >the time. I take naps during the day. My dad thinks I may be amenic. >if I am amenic what do they do for it?> Leah >>>>>>>Please visit the Zapper homepage at>http://www.ZapLife.org > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Dolores, You sound a lot like my cousin's daughter who has SAD. She uses a light box during the winter months up here in Canada. When you are in such a sunny place it seems unlikely but who knows. Our bodies are so unique. From what I understand SAD can be due to low Vit D levels and those living in sunny climates do not always have high Vit D levels. It may be worth your while to have your levels checked - 25(OH)D test. take care, carol_DM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2011 Report Share Posted March 25, 2011 Hi Carol, You could be right about the D levels. Remember that for two years I was on MP and we had to keep our D levels low and wear NoIR glasses in the house. I bought dark shades and put black shades on the lamps. I was told that light would ruin my amygdula or something like that if I went out during the day. So, we only went out at night. I still stay out of the sun due to hyperpigmentation which is still prominent only on my arms as I wear an umbrella, rain or shine. and keep the dark glasses on. We never go to the beach. I swim in the backyard pool at sunset and evenings when it is warm. Haven't been in since October.  Right now am having a problem with my eyes. Have seen 4 opthalmologists in the past few weeks and each one adds something different or contradicts the other. Seems like according to them, I grew cataracts in an instant.One doc decided to do a lazer treatment in one eye and I immediately lost most of the vision in that eye. Now they want to do both eyes and I am in a tizzy as to which one I should follow. I tell Mike I want to go back to NYU Eye & Ear Institute,but don't want to go alone as we have a dog now to care for plus can't afford the extra expenses. My Minocin cost me & 54.00 today for 60 pills.  That is a thirty day supply as I take two per day.  I will have the D levels checked. That is probably it as I don't do dairy either. I am lactose intolerant. Thanks, Dolores & Mike From: Bob & Carol Zarn <bczarn@...> Subject: rheumatic Re: tired all the time rheumatic Date: Friday, March 25, 2011, 10:16 AM  Dolores, You sound a lot like my cousin's daughter who has SAD. She uses a light box during the winter months up here in Canada. When you are in such a sunny place it seems unlikely but who knows. Our bodies are so unique. From what I understand SAD can be due to low Vit D levels and those living in sunny climates do not always have high Vit D levels. It may be worth your while to have your levels checked - 25(OH)D test. take care, carol_DM Quote Link to comment Share on other sites More sharing options...
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