Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Nina, The consensus is NON denatured whey. The majority use products by WellWisdom...they are ImmunoPro or RenewPro. RP is easier to mix and has a sweetener. Very sensitive people begin with a TINY amount...less than 1/8 teaspoon. I have Sulphur sensitivity, but can take ImmunoPro Others can ask or explain more... I have been where you are...and I really, really hope it will get better. Be very gentle with yourself, Katrina > > I am very sick and can barely read. Please help me find the posts that > tell me what kind of whey product to try. I am confused about un and > non and which brands are which. I also need to know why some cant take > it and how to tell if I am one and what do I about that if I can't > take it. Something about a sulphur. Ten years ago I got experimental > L-Glutathione and ATP injections and it was like an instant net of > searing agony, a fire over my whole body. Only klonopin made it stop. > > I have no doctor to help me even though Salvato dx'd me ten years ago. > Apparently doctors think I am not sick, or mental. I am offered only > NSAIDS. I am bedridden and weak and in pain and very confused as to > how to help myself. > > And I am alone, and desperate, and cannot navigate this site. Please > point me where I need to go. Please. > > Thankyou, nina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 If you want to get permanently horribly worse taking whey protein without first determining serum cysteine is a great way to go about it. If you'd rather not play russian roulette (the odds are actually worse, it is like playing with 2 or 3 bullets in the cylinder) you can get this test done through Great Smokies labs for about $35. Cysteine is an entirely different compound than cystine and cystine is not relevant. This can also be figured out by a couple of weeks of very careful dietary experiment but the test is inexpensive enough most people do it that way. Andy > I am very sick and can barely read. Please help me find the posts that > tell me what kind of whey product to try. I am confused about un and > non and which brands are which. I also need to know why some cant take > it and how to tell if I am one and what do I about that if I can't > take it. Something about a sulphur. Ten years ago I got experimental > L-Glutathione and ATP injections and it was like an instant net of > searing agony, a fire over my whole body. Only klonopin made it stop. > > I have no doctor to help me even though Salvato dx'd me ten years ago. > Apparently doctors think I am not sick, or mental. I am offered only > NSAIDS. I am bedridden and weak and in pain and very confused as to > how to help myself. > > And I am alone, and desperate, and cannot navigate this site. Please > point me where I need to go. Please. > > Thankyou, nina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 I will get PERMANENTLY worse??? Can I get Great Smokies to test me without a doctor's help? And I live on $300 a month after rent and untilities. So inexpensive is relative. Thankyou for anwering. But now I am really worried. > > If you want to get permanently horribly worse taking whey protein without first > determining serum cysteine is a great way to go about it. > > If you'd rather not play russian roulette (the odds are actually worse, it is like playing with > 2 or 3 bullets in the cylinder) you can get this test done through Great Smokies labs for > about $35. > > Cysteine is an entirely different compound than cystine and cystine is not relevant. > > This can also be figured out by a couple of weeks of very careful dietary experiment but > the test is inexpensive enough most people do it that way. > > Andy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 It depends on what state you live in I believe whether Genova (Great Smokies) will do the tests without a docs scrip for it. I live in CA and need one for any testing. nina_infinite <nina_infinite@...> wrote: I will get PERMANENTLY worse??? Can I get Great Smokies to test me without a doctor's help? And I live on $300 a month after rent and untilities. So inexpensive is relative. Thankyou for anwering. But now I am really worried. > > If you want to get permanently horribly worse taking whey protein without first > determining serum cysteine is a great way to go about it. > > If you'd rather not play russian roulette (the odds are actually worse, it is like playing with > 2 or 3 bullets in the cylinder) you can get this test done through Great Smokies labs for > about $35. > > Cysteine is an entirely different compound than cystine and cystine is not relevant. > > This can also be figured out by a couple of weeks of very careful dietary experiment but > the test is inexpensive enough most people do it that way. > > Andy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Andy, that was unkind to issue your warning in such a panic-inducing way to someone who is clearly already overwhelmed. Plus it was inaccurate since most people don't test their cysteine before trying whey. Nina, I'm sorry you are doing so badly. Do you have any friends or family members who could help you do some research? The short answer is that most people who can't tolerate whey have a sulfur sensitvity. If you are very sensitive to sulfur, you will also be sensitive to sulfur-containing foods such as brocolli, garlic, onions, and eggs. Also, if you feel worse after eating protein, you may have an ammonia issue. There are various degrees of these issues. If you're less sensitive, ammonia can build up from whey over a few months and cause problems. So if you have problems with any of these things, I wouldn't try whey right now. Given your past reaction to glutathione injections, it might not be the best thing to try anyway. I'm not sure what you've tried since it sounds like you've been sick a long time, but it also sounds like you aren't taking anything right now. Have you tried the more basic things which are less likely to cause problems, like magnesium and B-12? If you do decide to try whey (whether or not you do a cysteine or glutathione test first), make sure to start with very small amounts and build up very slowly. I know it's all very overwhelming. I hope you find some things which help you feel better. Trina andrewhallcutler <AndyCutler@...> wrote: If you want to get permanently horribly worse taking whey protein without first determining serum cysteine is a great way to go about it. If you'd rather not play russian roulette (the odds are actually worse, it is like playing with 2 or 3 bullets in the cylinder) you can get this test done through Great Smokies labs for about $35. Cysteine is an entirely different compound than cystine and cystine is not relevant. This can also be figured out by a couple of weeks of very careful dietary experiment but the test is inexpensive enough most people do it that way. Andy > I am very sick and can barely read. Please help me find the posts that > tell me what kind of whey product to try. I am confused about un and > non and which brands are which. I also need to know why some cant take > it and how to tell if I am one and what do I about that if I can't > take it. Something about a sulphur. Ten years ago I got experimental > L-Glutathione and ATP injections and it was like an instant net of > searing agony, a fire over my whole body. Only klonopin made it stop. > > I have no doctor to help me even though Salvato dx'd me ten years ago. > Apparently doctors think I am not sick, or mental. I am offered only > NSAIDS. I am bedridden and weak and in pain and very confused as to > how to help myself. > > And I am alone, and desperate, and cannot navigate this site. Please > point me where I need to go. Please. > > Thankyou, nina > --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 It is possible it was the ATP that affected you. I get glutathione IV weekly and do fine with it, but the one time I tried a half dose of the standard glutathione/ATP intramuscular shot supposedly so good for chronic fatigue, I had a horrific and awful reaction. I was sick all night and finally threw up. > > > > If you want to get permanently horribly worse taking whey protein > without first > > determining serum cysteine is a great way to go about it. > > > > If you'd rather not play russian roulette (the odds are actually > worse, it is like playing with > > 2 or 3 bullets in the cylinder) you can get this test done through > Great Smokies labs for > > about $35. > > > > Cysteine is an entirely different compound than cystine and > cystine is not relevant. > > > > This can also be figured out by a couple of weeks of very careful > dietary experiment but > > the test is inexpensive enough most people do it that way. > > > > Andy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 On Aug 30, 2006, at 6:15 PM, jill1313 wrote: > It is possible it was the ATP that affected you. I get glutathione IV > weekly and do fine with it, but the one time I tried a half dose of > the standard glutathione/ATP intramuscular shot supposedly so good for > chronic fatigue, I had a horrific and awful reaction. I was sick all > night and finally threw up. I've had ATP substituted in some of my shots, and didn't care for it, either. It didn't make me sick, just a little uncomfortable. When I went back to AMP, it was MUCH better. I understand AMP is preferred by a lot of practitioners for a lot of different reasons these days. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 I hadn't heard about AMP. Are you doing better now? I guess while you were laid up you blogged . > > > It is possible it was the ATP that affected you. I get glutathione IV > > weekly and do fine with it, but the one time I tried a half dose of > > the standard glutathione/ATP intramuscular shot supposedly so good for > > chronic fatigue, I had a horrific and awful reaction. I was sick all > > night and finally threw up. > > I've had ATP substituted in some of my shots, and didn't care for it, > either. It didn't make me sick, just a little uncomfortable. > > When I went back to AMP, it was MUCH better. I understand AMP is > preferred by a lot of practitioners for a lot of different reasons > these days. > > Sara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Hey everyone, I'm knew here, and couldn't help but comment. I too had a series of Glutathion which have always given me a lift, but the last one made me horribly sick, vomiting and in bed for 7 days. Apparently the doctor changed the type he used. I hadn't understood there were " types " of glutathion, but this explains it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 What next, ? Will he change back and will you continue to take them? Adrienne Re: Re: wheys , sensitivities Hey everyone, I'm knew here, and couldn't help but comment. I too had a series of Glutathion which have always given me a lift, but the last one made me horribly sick, vomiting and in bed for 7 days. Apparently the doctor changed the type he used. I hadn't understood there were " types " of glutathion, but this explains it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 Sorry Andy, with all due respect, I have to agree with Katrina. Besides your blunt delivery, two issues need to be addressed: Where is the proof or studies that show that is a person with already high (or is it just normal) levels of cysteine, who then takes whey makes a PWC PERMANENTLY, HORRIBLY worse? And secondly, I had a plasma amino acid test from Great Smokies about five years ago, and it was a hell of a lot more expensive than $35. Perhaps you're talking about just testing cysteine levels? d. p.s. one more question: You said cysteine is " an entirely different compound " than cystine " . I thought cystine was made from cysteine? > If you want to get permanently horribly worse taking whey protein without first > determining serum cysteine is a great way to go about it. > > If you'd rather not play russian roulette (the odds are actually worse, it is like playing with > 2 or 3 bullets in the cylinder) you can get this test done through Great Smokies labs for > about $35. > > Cysteine is an entirely different compound than cystine and cystine is not relevant. > > This can also be figured out by a couple of weeks of very careful dietary experiment but > the test is inexpensive enough most people do it that way. > > Andy > > > I am very sick and can barely read. Please help me find the posts that > > tell me what kind of whey product to try. I am confused about un and > > non and which brands are which. I also need to know why some cant take > > it and how to tell if I am one and what do I about that if I can't > > take it. Something about a sulphur. Ten years ago I got experimental > > L-Glutathione and ATP injections and it was like an instant net of > > searing agony, a fire over my whole body. Only klonopin made it stop. > > > > I have no doctor to help me even though Salvato dx'd me ten years ago. > > Apparently doctors think I am not sick, or mental. I am offered only > > NSAIDS. I am bedridden and weak and in pain and very confused as to > > how to help myself. > > > > And I am alone, and desperate, and cannot navigate this site. Please > > point me where I need to go. Please. > > > > Thankyou, nina > > > > > > > > > --------------------------------- > How low will we go? Check out Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 What next, ? Will he change back and will you continue to take them? Hi Adrienne He has changed back - apparently some other people had a (somewhat milder) reaction, so he's gone back to the original. I'm not having any because I can't afford them. Around $200 a pop (with other things included like vitamins, minerals).I have to make do with supplements, but I have absorption problems, so I just don't know. I stopped working, so the cash flow ceased. I guess we just do what we can do. I measured high mercury, nickel and copper levels, had some chelation, also expensive, but my body just couldn't handle it, so I'm on the supplements. Interestingly since I introduced lots of Kyolic garlic supplement I got a boost. I reckon the viruses are getting a run for their money. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 , Glad the garlic is helping. Thanks for the reminder. Adrienne Re: Re: wheys , sensitivities What next, ? Will he change back and will you continue to take them? Hi Adrienne He has changed back - apparently some other people had a (somewhat milder) reaction, so he's gone back to the original. I'm not having any because I can't afford them. Around $200 a pop (with other things included like vitamins, minerals).I have to make do with supplements, but I have absorption problems, so I just don't know. I stopped working, so the cash flow ceased. I guess we just do what we can do. I measured high mercury, nickel and copper levels, had some chelation, also expensive, but my body just couldn't handle it, so I'm on the supplements. Interestingly since I introduced lots of Kyolic garlic supplement I got a boost. I reckon the viruses are getting a run for their money. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 Nina For whey and cfs/fms go look at ( click on files for tons of great info ) :- Whey-CFS-FMS/?yguid=183763864 > > I am very sick and can barely read. Please help me find the posts that > tell me what kind of whey product to try. I am confused about un and > non and which brands are which. I also need to know why some cant take > it and how to tell if I am one and what do I about that if I can't > take it. Something about a sulphur. Ten years ago I got experimental > L-Glutathione and ATP injections and it was like an instant net of > searing agony, a fire over my whole body. Only klonopin made it stop. > > I have no doctor to help me even though Salvato dx'd me ten years ago. > Apparently doctors think I am not sick, or mental. I am offered only > NSAIDS. I am bedridden and weak and in pain and very confused as to > how to help myself. > > And I am alone, and desperate, and cannot navigate this site. Please > point me where I need to go. Please. > > Thankyou, nina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2006 Report Share Posted September 3, 2006 hi also take the whey products at a time of the day when your body is most receptive or accepting of suppliments. ..i.e. i always do better trying new things near the end of the day when my body is more awake. if u are supersenstive pwc than try with a salt size grain on your tongue and slowly work ur way up . ... at the first sign of crashing or symptoms of increased naseuas , sleeping , temperature than back down to a dose you tolerated a few days pior and stay there awhile than a few weeks or months later try to increase it ..i had to start with chemistry set spoosns and s l o w ly up the dose : the renew product maybe the cheapest and well tolearted many of us started where u are it .its small , slow steps ... hang in there tealk Re: wheys , sensitivities Nina, The consensus is NON denatured whey. The majority use products by WellWisdom...they are ImmunoPro or RenewPro. RP is easier to mix and has a sweetener. Very sensitive people begin with a TINY amount...less than 1/8 teaspoon. I have Sulphur sensitivity, but can take ImmunoPro Others can ask or explain more... I have been where you are...and I really, really hope it will get better. Be very gentle with yourself, Katrina > > I am very sick and can barely read. Please help me find the posts that > tell me what kind of whey product to try. I am confused about un and > non and which brands are which. I also need to know why some cant take > it and how to tell if I am one and what do I about that if I can't > take it. Something about a sulphur. Ten years ago I got experimental > L-Glutathione and ATP injections and it was like an instant net of > searing agony, a fire over my whole body. Only klonopin made it stop. > > I have no doctor to help me even though Salvato dx'd me ten years ago. > Apparently doctors think I am not sick, or mental. I am offered only > NSAIDS. I am bedridden and weak and in pain and very confused as to > how to help myself. > > And I am alone, and desperate, and cannot navigate this site. Please > point me where I need to go. Please. > > Thankyou, nina > Quote Link to comment Share on other sites More sharing options...
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