Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Sherri, keep me posted on how you do on it. My daughter seems, according to Dr. Cheney's phases of the illness, to be a phase 3 patient and I don't think this would help her. It seems to have helped many people, but none that are essentially bedridden. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Gail I didn't know that Immunocal will not be on the MLM for much longer. I think that is great news. How did you find this out? How long till it isn't MLM,do you know? I think the price will go down then,don't you think? Won't that be good. That is a lot of why people can't take it....it is too expensive. Re: Immunocal >From: GAILRONDA@... > >In a message dated 4/21/99 10:35:11 PM Eastern Daylight Time, >S@... writes: > ><< personal gripe is that it cost too much. >> >Steve, that's one huge truth. I did find out that Immunocal will not be on a >multi-market selling scale for too much longer. PWAs use it and find it >beneficial to most. >Gail > >------------------------------------------------------------------------ >Has ONElist changed your life? >http://www.ONElist.com >Visit our homepage and share with us your experiences at ONElist of the Week! >------------------------------------------------------------------------ >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 April 22, 1999 Report Share Posted April 22, 1999 In a message dated 4/22/99 2:12:59 PM Eastern Daylight Time, oobadooba@... writes: << I didn't know that Immunocal will not be on the MLM for much longer. I think that is great news. How did you find this out? How long till it isn't MLM,do you know? I think the price will go down then,don't you think? Won't that >> I was dicussing this with a man who has an inside track on Immunocal from the AIDS end of this. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Sherrie, I didn't know about Cheney's newest research and it certainly puts more hope into a lot of people! Thanks! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 GAILRONDA@... wrote: > > From: GAILRONDA@... > > Sherri, keep me posted on how you do on it. My daughter seems, according to > Dr. Cheney's phases of the illness, to be a phase 3 patient and I don't think > this would help her. It seems to have helped many people, but none that are > essentially bedridden. > Gail Gail, did you know that beginning in May Cheney will be initiating a study in which polypeptides processessed from fetal cow brains will be injected into CFS patients? Sounds a little bizarre, I know...what with " mad cow disease " and all. But, these are specially bred cattle from Canada and the polypeptides that are derived from the fetal brains are apparently checked and rechecked along the way for purity, etc. The process has already been approved by the FDA. In fact, it is already being used successfully in California. Cheney has been in contact with the brain specialist in California who regenerates the brains of brain-injured children by using this technique (if I remember correctly, there is a " growth " factor in the polypeptides that renews damaged brain tissue). Since the brain specialist is having much success with this technique, Cheney is going to do a study to see if this might help patients in his " Phase III " of CFIDS. I'm hoping he gets positive results (I volunteered, but he had already filled his study quota). Maybe this will be something that will turn out to help all of us! My husband bought my a sign to go above my computer that says: " Of all the things I've lost, I miss my brain the most. " That sign just about says it all! Good luck to your daughter! Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Message text written by INTERNET:onelist >I hope my concerns have not been express in an overly negative way. Take care Steve< I think you've shared something important. Packaging and hype can make prices really out of control. I'm planning on trying the immunocal or it's equivelant and if I can do it affordably, so much the better. If it's close to $100 a month, I simply don't have it, so will at least look into another brand and once I'm familiar with it, will research products that really are the same thing. Do you mean immunocal doesn't list all the ingredients? Christa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 <<<<<<<<<<<<<<<<< Ellice I have heard of others on immunocal who had nausea and achiness for a few days after starting it....I am one of them.....detoxing quickly can cause this. Maybe this is what is happening to you? I did this too,but after a few days,slowly got to feeling better. Start out slow if you need to, and work your way up to a pack a day,then 2 packs a day. After almost 4 months I am up to 2 packs a day now. It is slow,but there are many differences in my health since Immunocal. Don't give up too soon. Maybe starting out slower will help. Hope this helps. >>>>>>>>>>>>>>>>>>>> Hello, I have read many posts from those who are using Immunocal. Can anyone tell me what is in this supplement, and what it's purpose is? Thanks, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 1999 Report Share Posted April 30, 1999 Jane Immunocal is a product that is clinically proven to raise your glutathione levels. GTH is the most important antioxidant and detoxifier in the body...highest need is in the liver,but it is needed all over, in the cells. Immunocal helps the body produce it in the cells. Without enough GTH,you have a host of symptoms.....similar to CFIDS/FM etc.(weak immunity,pain,brain fog,etc etc etc) I also remember reading that chronic stress like allergies,infections ,emotional stress,any kind of stress and genetics etc can deplete your body of GTH. I hope this answered your question. Re: Immunocal >From: SlvrMoon2@... > ><<<<<<<<<<<<<<<<< >Ellice >I have heard of others on immunocal who had nausea and achiness for a few >days after starting it....I am one of them.....detoxing quickly can cause >this. Maybe this is what is happening to you? I did this too,but after a >few days,slowly got to feeling better. Start out slow if you need to, and >work your way up to a pack a day,then 2 packs a day. After almost 4 months I >am up to 2 packs a day now. It is slow,but there are many differences in my >health since Immunocal. Don't give up too soon. Maybe starting out slower >will help. Hope this helps. >>>>>>>>>>>>>>>>>>>>> > >Hello, > >I have read many posts from those who are using Immunocal. Can anyone tell >me what is in this supplement, and what it's purpose is? > >Thanks, >Jane > >------------------------------------------------------------------------ >Wanting to get back in touch with old friends? > >Get re-acquainted through a ONElist community. >------------------------------------------------------------------------ >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 May 11, 1999 Report Share Posted May 11, 1999 <<<<<<<<<< You wrote: My daughter started Immunocal a week ago, one packet per day, and just told me that she is now less bothered by smells and feels less " strange " when she eats anything. >>>>>>>>>>>>>>> Can someone tell me what is in this Immunocal that so many are trying? Or direct me to a website where I can find that info? Thanks, Jane SlvrMoon2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 Dear Sue, That is very, very interesting! I had seen your earlier post on this, and I tried the Walmart nearest to me (about 40 miles away) and they had never heard of it, nor had any of the Rite Aids, but I didn't try asking the pharmacist if he could order it. You just say " I would like to order some immunocal " and they have in their distributor catalog? I live in Northern California, but these are national chains, so I wouldn't think it should make much difference. How much are they charging for immunocal? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 1999 Report Share Posted May 19, 1999 Gail, I am sorry! I know it is no taste treat : ), but it is better if you just have the immunocal with water, and milk if you must. See other posts re: the importance of not digesting this stuff. If you take with food (and yes, sorry, chocolate pudding counts!), you will be producing stomach acid to digest the food, and so will also digest the immunocal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 > Re: [, T.] more on latic > acidIn certain sports they have different way of dealing with lactic acid. > Cyclist will take a rest day and spin with little pressure and high rpms > in order to get a lot of blood and oxygen to the leg muscles also massage > helps eliminate lactic acid. Wieght lifters rotate the muscle group they > use in order to allow for a recovery period. > Like many folks my first experiences with CFS occurred when I was exercising very aggressively.Also many of my relaspes have been brought on by increased exertion. It seems that one factor of CFS is a low lactic acid threshold, the inablity to eliminate lactic acid, or both. I would be interesting to know more about this but I agree that it is not likely to be " the " cause. Itmay also be a reason why some amino acids seem to help some CFSers (afterall immunocal is just and amino acid supplement). I wish I knew more about this and I wonder if there are any drugs or supplements that will help the body eliminate lactic acid. However if such things did exist we would most likely know about them because atheletes would be using them. Maybe anabolic steroids or testosterone or DHEA helps in this area. Also it seems that anything that would increas e red blood cell would help. This could be why kutapressin is helpful to some. Who knows? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 I finally got an answer from Immjnocal.........it's covered, and often prived by the individual's claim but frequently need prior approval in: Arkansas Arizona but may need " medical Necissity form CA TAR form CO B4155 code +x2360+Modifier XD DE IL may need to use B9998 code for time being IN IO ME MA MI MN Missouri may need " exception form " Montana NE NV NH covered only if only ource of nutrition NJ NY ND- NDC Code for ND is 00999423603 OH OR WY Coverage follows medicare duidelines for tube feeding only: HI, ID, MD, MS (chldren orally), RI (children orally), SC, TX (children orally), VT, Wash. D.C., WI Immunocal Code not covered: Alaska, Alabama (children would be given special consideration), CT, FL, GA, KY (with some exceptions), NC, OK (children special consideration), PA, PR, SD, and WV The following states will reimburse by calorie content: KS, LA (exception), NM, TN, UT,VA, WA If this sounds confusing, it's because it is! They faxed me a " distributor copy " of 5/25/99. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 1999 Report Share Posted May 28, 1999 Message text written by INTERNET:onelist >The following states will reimburse by calorie content: KS, LA (exception), NM, TN, UT,VA, WA < Of course I have to be in this category. I'm just starting the immunocal this week and I won't know about ssdi and the insurance until my hearing next thursday. Just for the know... What exactly is reimbursement by calorie? They don't want to know how many I take in each day, do they? Christa R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 When I purchased Immunocal, I bought it from a distributor that sold it at cost ($57.00) to patients of Dr. Ferre/Dr. See. I'm sure if you tell him you have CFS he will sell it to you at this cost. His # is 1-800-257-1131. _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 Hi All, I have had to cut back my Immunocal dosage again. I think it is definitely stirring some immune response as I was getting too hot, sore glands, sore throat and WORSE fatigue. Sleep was worse too and I was only at about 1/2 pack daily. I have been ill over 20 years, so maybe it will take me longer to work up the dose with a minimum of side effects. Am going to stop for a couple days and start again at an even lower dose and keep working with it. When I first started it seemed to give me more energy, would like to capture that again! I think I've been on it a few weeks now. Was wondering how the rest of you are doing with dosages and side effects???? Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 Marcia wrote: I have had to cut back my Immunocal dosage again. I think it is definitely stirring some immune response as I was getting too hot, sore glands, sore throat and WORSE fatigue. Sleep was worse too and I was only at about 1/2 pack daily. I have been ill over 20 years, so maybe it will take me longer to work up the dose with a minimum of side effects. Am going to stop for a couple days and start again at an even lower dose and keep working with it. When I first started it seemed to give me more energy, would like to capture that again! I think I've been on it a few weeks now. Was wondering how the rest of you are doing with dosages and side effects???? Marcia Hi Marcia, I have had the same exp. you have had---got more energy at the beg., then sore glands and some gastro problems. Tapered to one half pack and now taking a break. I'm CFIDS/ME/Wrecking Ball Syndrome-- Class of 1991. Steve in Northern California <>< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Du Pre wrote: > Hi Marcia, > I have had the same exp. you have had---got more energy at the beg., then > sore glands and some gastro problems. Tapered to one half pack and now > taking a break. I'm CFIDS/ME/Wrecking Ball Syndrome-- Class of 1991. > > Steve in Northern California <>< Hi Steve, Welcome to my (Cfids) world! I guess misery loves company! At least I'm not alone, hope you are going to continue with the Imm. too! In spite of the side effects, its the best hope I have going right now! Marcia > > > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 I still occasionally do have side effects like that. It feels like I am fighting something...before,I don't think I could fight anything off. Being sick so long,maybe we have to start over like a child would...building up antibodies to common germs etc.??? It would make sense. PWC often do not build up antibodies and maybe the Immunocal is helping us do just that, now...that may be why we get " sick " while on it...I do feel like it is trying to help me fight things off.. Seems the LEF product does the same thing. I have only been on it a few days. The taste is sort of yucky though. After we can build up normal antibodies,maybe then we won't have the viral troubles and infections that are supposed to be dormant in " normal " people..... eventually,the domino effect that has caused problems in every system in our bodies over all the years we have been ill,may stop. this will be a slow process though. Makes sense to me and that is what I am hoping for..... Take care everyone, Re: Immunocal >From: Marcia Grahn <mgrahn@...> > >Hi All, > >I have had to cut back my Immunocal dosage again. >Was wondering how the rest of you are doing with dosages and side effects???? > >Marcia > > >------------------------------------------------------------------------ >Have you entered ONElist's " Grow to Give " program? > >Deadline is June 19. Join now to win $5000 for your charity of choice. >------------------------------------------------------------------------ >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 1999 Report Share Posted June 8, 1999 There is a distributor - Sam that was selling it at cost for $57.00 to CFS patients (I was referred by Dr. Ferre/Dr. See). His # is 1-800-257-1131. --- onelist wrote: > > ONElist: the best source for group communications. > > Join a new list today! > ------------------------------------------------------------------------ > 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. > > > There are 19 messages in this issue. > > Topics in today's digest: > > 1. Rheumatic Fever > From: CJCIMAGE@... (JODI CARLSON) > 2. Re : Immunocal #3 Report >julian > From: janel@... (JANEL) > 3. Re: Re : Immunocal Susy > From: SUSYDOG@... > 4. Re: Carol - Sick Building Syndrome > From: WELDMANM@... > 5. birth control meds > From: sreinert@... > 6. Buying Immunocal > From: sreinert@... > 7. For Michele - re lactoferrin and colostrum > From: " Carol & Lois Sieverling " > <lsieverl@...> > 8. Re: birth control meds > From: GAILRONDA@... > 9. For JL - re licorice and cortisol, and > bicycle testing with expired gas analysis > From: " Carol & Lois Sieverling " > <lsieverl@...> > 10. Re: For JL - re licorice and cortisol, and > bi cycle testing with expired gas analysis > From: " , T. " > <S@...> > 11. Re: Imuplus is same as immunocal? > From: Stefscreen@... > 12. Re: For JL - re licorice and cortisol, and > bi cycle testing with expired gas analysis > From: ne Kieffer <theocean@...> > 13. Re: For JL - re licorice and cortisol, and > bi cycle testing with expired gas analysis > From: " , T. " > <S@...> > 14. Re: Imuplus is same as immunocal? > From: " , T. " > <S@...> > 15. CHATELAINE READ: Health: Can a diagnosis > make you sick? > From: Brown <pbrown@...> > 16. Canadian government recognition > From: Brown <pbrown@...> > 17. Re: licorice/no sweat' > From: KB46@... > 18. Rite Aid and immunocal > From: Diggins/Jarmolow > <talkcr7@...> > 19. Re: Imuplus is same as immunocal? > From: Marcia Grahn <mgrahn@...> > > > _______________________________________________________________________________ > _______________________________________________________________________________ > > Message: 1 > Date: Mon, 7 Jun 1999 00:44:21 -0700 (PDT) > From: CJCIMAGE@... (JODI CARLSON) > Subject: Rheumatic Fever > > When I was starting my second semester of college, I > got really sick > with what I thought was the flu= runing fever, hurt > all over,but no sort > throat that I remember. Stayed out of classes that > week and saw the > school nurse. At the end of that week, I had a > swollen ankle. I thought > I had sprained it, but could not figure out how > since I had not been out > of bed much. The next morning, my knee on the same > leg was swollen. I > got really scared and called my parents. They called > my old family > doctor, and he said, " go get her immediately-she has > rheumatic fever. > They came and got me that day. I was in the hospital > the next day being > evaluated. By that time, my other ankle was swollen. > It did turn out I > had rheumatic fever. I was in hospital for one month > flat on my back to > avoid heart damage. When I got out a month later, I > weighed 99 pounds > and could not walk up the one step into my parent' s > house. I missed a > semester of college,and took prophylactic > antibiotics for about another > 6 months. Although I recovered with only a slight > heart murmer, I feel I > have never been the same since. I don't know that I > ever had scarlet > fever as a kid, but getting rheumatic fever at age > 18 was no picnic. I > feel that I probably had a weakness from then on > that made me more > suseptible to a trigger event that ushered me into > CFIDS. > > Jodi > > > > _______________________________________________________________________________ > _______________________________________________________________________________ > > Message: 2 > Date: Mon, 07 Jun 1999 11:19:50 +0200 > From: janel@... (JANEL) > Subject: Re : Immunocal #3 Report >julian > > hello n, > I was just now wondering how you were doing. Glad to > hear Immunocal and/or > Interferon seem to be having some effect. > You wrote: > > Many treatments might only work in > > the presence of other things, so it may be > NECESSARY to try different > > things in parallel. eg immunocal might work much > better if your selenium > > status is good, so if I tried selenium and later > immunocal, I might never > > get to the result. > > Yes, that's true, but the combinations are infinite > even when trying to > educatedly guess. Still, you're right, that's the > only way to go. > Nevertheless I do have a pb with attributing, say, a > positive effect from > Immunocal whilst at the same time taking > antibiotics. > > > If I tried every possible Good Idea that I know > of sequentially for at > > least a few months, I would be 198 years old by > the time I finished even > > the current ideas. I want to get better sooner > than that. > > Oh, I know!!!(Mrs Fawlty) Artistically negotiating > with science is pbly the > only way to go. > > > > c) As far as sorting out what does what, maybe it > doesn't matter so much, > > and I can possibly find out later by stopping > things one by one (once > > " cured " !). > > Yes, and gleefully enjoy deteriorating slowly, > smuggly knowing that it can > all be undone by starting back on the yak earwax! > How voluptuous! > > Thanks for trying stuff so methodically and > reporting, > > Nelly > > > > _______________________________________________________________________________ > _______________________________________________________________________________ > > Message: 3 > Date: Mon, 7 Jun 1999 07:09:54 EDT > From: SUSYDOG@... > Subject: Re: Re : Immunocal Susy > > In a message dated 6/7/99 6:59:41 AM Eastern > Daylight Time, janel@... > writes: > > > Yes, that's true, but the combinations are > infinite even when trying to > > educatedly guess. Still, you're right, that's the > only way to go. > > Nevertheless I do have a pb with attributing, > say, a positive effect from > > Immunocal whilst at the same time taking > antibiotics. > Hi, > Too soon really to tell but I too are on abx's > and trying immunocal, I > had taken it every other day and did like it > === message truncated === _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 I saw progress right away, but I have heard that Cheney says it can take 6 months! This is really curious, all these people getting fevers, when for me it is this very symptom (plus the lymph pain) that is really improved. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Mann wrote: > From: " Mann " <jmann@...> > > I have just started my third week on immunocal and would like some advice. > I have been running low-grade fevers everyday and have almost no energy > though I am sleeping well. I have felt this way many times before I started > the immunocal so it is nothing new. I, of course, am hoping to see some > progress and have ordered another month's supply. How soon did people who > have had some progress on this supplement see some improvement? I am pretty > committed to trying it for the recommeded 3 months but would like some > encouragement. Thanks, > > Hi , I noticed a difference within a few days. But had to lower the dose because it gave me fevers, sore glands, sore throat and MORE fatigue. When I went back to 1/3 pack a day, I got the good benefits again (more energy). Also when I took it during the day it made me more tired, but works better for me taking it right before bed. Also Cheney says its more effective on an empty stomach, but for me it can't be too empty or it upsets my stomach. You may need to adjust the dose, the time of day you take it and whether you take it between meals, with food, etc. to see what works best for you. We are all SO individual!!!! I will try and increase my dose over time slowly so I don't get the negative reactions. I hope you do stick it out a little longer and it works for you. I am really seeing a difference so far, but I have a long way to go to recovery! Hang in there! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 , I seem to feel the same way as Marcia and others, 1 weeks I was on 1 envelope ,then everyother day and it was too much , I have finally settled 4 teasp. right before bed in a tad of applesauce, 1 1/2 weeks now and I think it is slightly helping with overall symtoms. Energy especially, but does not do anything for my sore puffy feeling feet, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 1999 Report Share Posted June 30, 1999 Hi , Try e-mailing them or the 800 number they also may refer someone nearer to you, sounds like it hasn't hit in your neck of the woods yet... Good Luck PS: allergy research has Immunopro sp?and I think they also carry that but I would think either might send it... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 1999 Report Share Posted June 30, 1999 Hi , If you are interested in trying imuplus (a non-denatured whey protein isolate which Cheney says he is " confident " is the same as immunocal) here is a cheaper way to get it than through Sun Ray: go to www.biogene.net Here you can order the imuplus for US$99 for 60 packets, instead of US$110 from Sun Ray. Also, if you go with the immunocal, it will probably be about US$75 for the first 30 packets, but then if you agree to get it for a year (I think that's right), it should be US$60 for 30 packets. I have been using imuplus with absolutely fantastic results, and am just going to try immunocal now for comparison. What imuplus has helped with: fever, painful lymph nodes, fatigue, and though I had no cognitive problems before using it, it has given me an unprecedented level of mental clarity. Quote Link to comment Share on other sites More sharing options...
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