Guest guest Posted March 23, 1999 Report Share Posted March 23, 1999 In a message dated 03/23/1999 10:02:54 AM EST, you write: << Some lady at his work was touting this stuff called Noni juice as an excellent supplement for treating PPS and a host of other ailments.....Anyone else hear of it and tried it? Let me know. >> Hi April. Yes, I've heard of Noni Juice. I was watching Rosie O'Donnell last fall and she has a staff member who had a problem with her ankle (I believe) that kept her for the most part in a wheelchair and in constant pain. Her docs didn't know how to help her. Someone saw the show and sent her some Noni Juice to try. She claimed in did help her somewhat. Between that and her new docs treatments, she is pain free and walking--no--running around! I went to Rosie's site to get more info on her new doc because I have had serious problems with a pinched nerve for the last two years and wanted to find out the name of his book. When I checked the message boards, there were many postings about it. I haven't been there lately, but I'm sure they are still there. Rosie's cast member's name is Janette and the show aired Dec. 9/97. This info may be helpful if U go to the message boards at Keyword " Rosie " --check it out! Hope this helps.................Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 1999 Report Share Posted March 23, 1999 Noni Juice is from Hawaii and/or some other tropical area. I know that's the big 'marketing' thing about it. The rep's tell you that because it's from such a 'clean' place, it's healthy! I can't remember (DUH!) if it's actually from a 'noni' fruit or something else. I never tried it though. After realizing the pricing, I thought 'Noni that for me!' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 1999 Report Share Posted March 23, 1999 April, one of the doctors, Darryl See, M.D. of California, said he found Noni Juice to be a potent antioxident and suggested patients try it. It's not going to be a miracle cure, but may help a bit. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 1999 Report Share Posted March 23, 1999 GAILRONDA@... wrote: April, one of the doctors, Darryl See, M.D. of California, said he found Noni Juice to be a potent antioxident and suggested patients try it. It's not going to be a miracle cure, but may help a bit. Gail see also talks about the glyconutrients from mannatech, and about garlic and the pycnogenol, pine bark, grape seed extract family and echinacea too. there is data from him out there to review searching pubmed. nancy mcfadden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 1999 Report Share Posted March 23, 1999 I have been reading all the interferon posts with great interest and am getting excited for those of you who are about to try it. Please keep us CLOSELY informed each step of the way good or bad so we can all learn from your experience. It really does sound like one of the safest treatest options to date. I am also VERY cautious as about the theory that you need to get *worse* before you get *better*. Whenever someone has told me that in the past it meant I was about to get worse till I couldn't stand it any more.....there was no getting better. I am wondering , or anyone else, if you know of a Dr. in Oregon, or even Washington (state) that uses or is knowledgeable about this treatment????? Also, have any of you tried it already and did not benefit from it? (sorry if I missed it or forgot!) Good luck to those of you trying it, I hope you see the improvement that and Shari did!!!!! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 1999 Report Share Posted April 13, 1999 Hi Sue -- The issue of subtypes of alpha interferon is very interesting; unfortunately, I don't know nearly as much about it as I'd like to. I know that Alferon-N, the liquid stuff that I take, contains nine subtypes of natural human alpha interferon; the lozenges that Amarillo Biosciences makes only has three sub-types, which if I understand correctly the company chose to use for their specific effects on the immune system. I've wondered if their use of only three sub-types could be the reason why no side effects have shown up in their clinical trials, whereas with the liquid stuff some people experience side effects -- maybe it's one of the six extra sub-types that's causing the problem. Or maybe that has nothing to do with it! interferon From: rhbailey@... I thought those of you who are taking oral alpha intereferon might be interested in this excerpt from " A Commotion in the Blood--Life, Death, and the Immune System, " by S. Hall, Henry Holt & Co., 1997: No one argues that the drug is perfect against the diseases it currently fights, but some people do argue that the molecule is being used imperfectly. " During evolution, nature created one beta interferon, one omega interferon, one gamma interferon, but there are THIRTEEN different alpha interferons, " said Kari Cantell. " This is a very rich potential source for clinical use, and it has been very poorly exploited so far. It's a pity that the pharmaceutical companies have focused their efforts on only one type, alpha-2 interferon, so I think there's still a lot to be done. " Sue B. ------------------------------------------------------------------------ Did you know that we add over 1,000 new e-mail communities every day? http://www.ONElist.com Explore a new hobby, discover a new friend, laugh at a new joke! ------------------------------------------------------------------------ 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 15, 1999 Report Share Posted May 15, 1999 Christie, it actually helps more....this means that it doesn't matter if your CFIDS/ME was caused (or triggered, perhaps, since the cause is unknown) by a virus or by a toxic chemical....the same thing shows when testing for a biological PKR or whether testing for an up-regulated RNase-L, the immune pathway found to be upregulated in patients, at least during the first eight to ten years. In other words, we've all ended up with the same illness whether we had a toxic exposure or a virus! To use Tom Hennessey's words when talking about gulf war syndrome: " different insult, same result! " Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 Hi, Thanks, I am glad this article helped. Now if I could just convince a doctor to use interferon! Do you know if this has ever been done long distance? I realize that is probably not an option, but I thought I would ask. I have not found a doctor who will take all the info seriously - even my RHEUM who has sjogrens! Would welcome any suggestions. If I could travel, I would!!! take care, Christie tab@... ICQ# 24506195 At 09:47 PM 5/15/99 EDT, you wrote: >From: GAILRONDA@... > >Christie, it actually helps more....this means that it doesn't matter if your >CFIDS/ME was caused (or triggered, perhaps, since the cause is unknown) by a >virus or by a toxic chemical....the same thing shows when testing for a >biological PKR or whether testing for an up-regulated RNase-L, the immune >pathway found to be upregulated in patients, at least during the first eight >to ten years. In other words, we've all ended up with the same illness >whether we had a toxic exposure or a virus! To use Tom Hennessey's words >when talking about gulf war syndrome: " different insult, same result! " >Gail > >------------------------------------------------------------------------ >Got an opinion? > >Make it count! Sign up for the ONElist Weekly Survey now. >------------------------------------------------------------------------ >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 25, 1999 Report Share Posted May 25, 1999 Sorry, yet another stupid question. Who is Dr. Zhang and how do I access info. Thanks, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 hi sandy, did you see arlene's note? you can find him at www.zhang-clinic.com in peace, talyne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 I was literally phobic of needles when I was given kutapressin. You can get over your fear of needles through systematic desensitviation. Start by getting used to handling the syringe and needle will watching TV. Then move on to giving shots of water to an orange, net put the orange under your clothing and pretend to give yourself a shot. Do each of these step hundreds of times. If kutapressin makes you feel better it will be sooo worth it. If not then at least you know and you can move on to something else. LOL Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 1999 Report Share Posted September 7, 1999 Dear Nelly, Is interferon in low doses used in Europe for CFIDS/FM and related disorders? Thanks, Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 1999 Report Share Posted September 19, 1999 Hi Swingdaboat: What symptoms were relieved by the interferon. Isn't this a cancer treatment too? xo Shell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 You can get your interferon thru Catchings Pharmacy 800-356-1620 in Texas. All they need is your MD RX!!!! As far as the doses go--everyone seems to be on really different doses. MY advice is more is NOT better......go SLOW....I've been on it since April and I'm only on 250UX2/day....any higher makes me wicked sick.....where others are on 250UX5/day.....good luck! Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 Hi, I was perscribed the lozenges which come from Canada. These are being used in the clinical studies for sjogrens and apparently dose is more exact. It has been a bit of a runaround today. I had to call Joe Cummins, CEO of Amarillo Biosciences, and he had to call Dr Ship here to ask to a note confirming that he would moniter my progress. This is necessary now because the FDA has been seizing interferon lozenges coming into USA. Then I had to fax my script to Dr. Cummins. Nuts, isn't it? But at least I will get to try it! Have you been reading about PWC actually having Lyme? I was diagnosed with it is 94, and was on antibotics. Then I had retinal infarct and Dx became lupus, so I dropped the Lyme. I probably should go back to Lyme doc for testing again before taking interferon in case it might have an effect on testing. Thanks for the advice - I will take it slower than the doc wants me to because of various reactions of people on it. take care, CHristie > >You can get your interferon thru Catchings Pharmacy 800-356-1620 in Texas. >All they need is your MD RX!!!! >As far as the doses go--everyone seems to be on really different doses. MY >advice is more is NOT better......go SLOW....I've been on it since April and >I'm only on 250UX2/day....any higher makes me wicked sick.....where others >are on 250UX5/day.....good luck! >Ann > >>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 October 8, 1999 Report Share Posted October 8, 1999 Hey Christie--good luck w/the interferon! Although I take the liquid form (not lozenges) I keep it frozen until about 10minutes before taking it......to allow " defrost " time. I too was bedridden before the Interferon.not now though! Lots of luck to you! Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 I;m curious Christie--why did you stop the whey protein? Its just " protein " like in a piece of chicken,etc...the interferon is a medication..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Christie, Where do you get these interferon tablets? Regards, Interferon > From: " C.Tab. " <tab@...> > > Hi all, > > My shipment of interferon just arrived and I have a lozenge under my tongue > as I write! I sure hope it helps. I found another person who benefited > from it, who was nearly bedridden with pain of FM, but now is working! The > lozenges are small so I just took the whole 150 dose and see what happens. > Now I wonder how long before I see any type of reaction! I do have a > question, however. These have to be refridgerated. How does anyone on it > deal with this if you are out of house any length of time. Are they OK for > a while out of fridge or do they need to be kept cold all the time? > > Thanks for any info, and any updates as we were doing before would be > interesting! I stopped the whey protein due to interferon as I want to know > which product is working. > > Take care, > > Christie > > > Christie > > > 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 October 8, 1999 Report Share Posted October 8, 1999 Hi, I got them from a Doctor who is involved with the FM/sjogrens trials. I will call my source and ask if it is alright to have people call or write for a doctor in their area. Afraid to say too much on line right now because these docs don't need any trouble - they are on our side! Most here have gotten it through a forward thinking doctor they have found, but there aren't many! It is available in Canada, however. Also, with a docs script, Catchings Pharmacy in Amarillo will make it in liquid form. Please see 's site at:http://home.earthlink.net/~cfsmail/ifna.html for more info. Please write if you have questions! take care, Christie At 05:41 PM 10/8/99 -0700, you wrote: >From: " Leckie " <leckie@...> > >Christie, > >Where do you get these interferon tablets? > >Regards, > > Interferon > > >> From: " C.Tab. " <tab@...> >> >> Hi all, >> >> My shipment of interferon just arrived and I have a lozenge under my >tongue >> as I write! I sure hope it helps. I found another person who benefited >> from it, who was nearly bedridden with pain of FM, but now is working! >The >> lozenges are small so I just took the whole 150 dose and see what happens. >> Now I wonder how long before I see any type of reaction! I do have a >> question, however. These have to be refridgerated. How does anyone on it >> deal with this if you are out of house any length of time. Are they OK >for >> a while out of fridge or do they need to be kept cold all the time? >> >> Thanks for any info, and any updates as we were doing before would be >> interesting! I stopped the whey protein due to interferon as I want to >know >> which product is working. >> >> Take care, >> >> Christie >> >> >> Christie >> >> > 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. >> > >>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 October 8, 1999 Report Share Posted October 8, 1999 At 08:14 PM 10/8/99 EDT, you wrote: >From: SWNGDABOAT@... > >I;m curious Christie--why did you stop the whey protein? Its just " protein " >like in a piece of chicken,etc...the interferon is a medication..... Well, I wanted to see which one would work. If I do both, then I won't know which is working better. Also have had upset gut and it was hard to get down! Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 1999 Report Share Posted October 15, 1999 Christie asked how to keep the interferon lozenges cold when she leaves the house for any length of time: Here's a poor-man's quickie way to keep something cold -- put a bag of frozen peas or corn (unopened) in a plastic bag along with the pills you need to take with you. Then put that in your pocketbook. (If you have enough space, wrap it in paper towels or something so it doesn't " sweat " on other things in your purse). As long as you remember not to EAT that particular bag of vegies (mark it DON'T EAT THIS!!), you can refreeze it and use it again. (If you want to get fancy, they do make small soft thermos bags -- I know you can get them at K-Mart -- and they make little bags or hard plastic thingies that retain cold after being in the freezer overnight ....) Schweitzer mailto:schweit2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 Hi, Have those on the interferon found relief from respitatory infections with oral interferon use?? And if you have an infection, do you continue taking it?? Thanks, Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 Have the interferon studies that were done it Texas been completed? Are they published? thanks Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 >From: " , T. " <S@...> > >Have the interferon studies that were done it Texas been completed? Are they >published? Hi, They are in phase lll now, but do not know how long these last. For more info go to: http://www.amarbio.com/ This the company doing the trials. Take care, Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2000 Report Share Posted June 12, 2000 > From: " hudecz " <hudecz@...> >Subject: Re: alpha interferon > >If you are not going to take it would you be willing to sell it? >thanks- > Hi, I will keep it until I know more about what is happening with the body! Have it in fridge tho so it will keep! Have you gone to egroups, to this list - there you can change from mail to digests. I even have digest because of all the mail! If you have trouble. please write back. I'm will on the docs that don't believe us... take care, Chrisite Quote Link to comment Share on other sites More sharing options...
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