RE: Autoimmune disease article- a must read

[Guest guest]

Oh, I forgot to mention that from the studies, they believe that on Urso you are 3 times more likely to have liver problems, attacks, etc. Who really knows.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

E-mail to the NIH

The following is the e-mail i received back from the NIH. I hope everyone is following Dr. Lindor's advice to contact the NIH to support funding of research on PSC. The more e-mails the better.

I hope this finds everyone well!

take care,

Ross Heil

Dear Ross,Thank you for taking the time to write to me and to share your personalstory. I know it must be difficult to be diagnosed with PSC and UC butit looks like you are channeling your energies in the right direction.We, too, hope that you will complete your studies and go on to researchPSC. We can use all of the help that we can muster in studying thisdisease!I am sure that you are disappointed that Dr. Lindor's high dose URSOstudy ended the way it did. But as you know, even "negative" studieshave some positive results. Dr. Lindor and his colleagues did anexcellent job of very carefully conducting this clinical trial and theyhave collected a wealth of data that will be used beyond answering thequestion about URSO. While it wasn't the result that we all wanted, itdoes answer an important question: dose high dose URSO benefit patientswith PSC?

Now that we think we know the answer, those patients takinghigh dose URSO can stop - why take an expensive drug that doesn't appearto be of benefit? It also is an opportunity for clinicians andresearchers to look for new/other therapies other than URSO.We at NIDDK share your desire to advance the science for PSC.Unfortunately, we are limited by rules that govern how we distributefunds that are appropriated to us by congress. Decisions aboutredirecting funds from one project to another are not a simple task andmay not be permissible because of federal regulations current laws.But, please be assured that we at NIDDK will do everything we can towork with Dr. Lindor to channel the funds allocated for his presentstudy into advancing the science of PSC. I have taken the liberty of including Dr. Lindor on this email - I hopeyou don't mind. Dr. Lindor and I

have been colleagues for a long timeand share your concerns and passion for finding new treatments for PSCand other serious liver diseases. He can actually give you more advicethan I am allowed to give on how to make PSC a national priority andthus, find new funds and advance the science of finding new treatmentsfor PSC. Best regards,Pat R. Robuck, Ph.D., M.P.H.Director, Clinical Trials ProgramDivision of Digestive Diseases and NutritionNIDDK6707 Democracy Blvd., Room 659Bethesda, MD 20892-5450Telephone: FAX: Email: pr132q@...

-- Ian Cribb P.Eng.

[Guest guest]

I'm skeptical. Their own disclaimer states (http://www.lef.org/about_us/lef_legal_01.htm - my emphasis):

Health-Related Information

The information contained in the lef.org Web site is provided for informational purposes only and is not meant to substitute for the advice provided by your doctor or other health care professional. You should not use the information available on or through the lef.org Web site (including, but not limited to, information that may be provided by healthcare and/or nutrition professionals employed by, or contracting with, The Life Extension Foundation) for diagnosing or treating a health problem or disease, or prescribing any medication. Information and statements regarding dietary supplements have not been evaluated by the Food and Drug Administration unless specifically so stated

Disclaimers

The dietary and other substances discussed on this site may not have undergone evaluation and/or testing by the United States Food and Drug Administration or like agency of any other country. Risks that might be determined by such testing are unknown. Where these substances are dietary supplements, they are not intended to diagnose, treat, cure or prevent any disease. In some jurisdictions, some of these substances may be considered prescription drugs, controlled or contraband substances. Since the information published on the Life Extension Foundation web site is accessible to anyone throughout the world, the Life Extension Foundation does not give legal advice that may apply to any particular consumer. Consumers are cautioned to check with local, regionalized legal counsel and/or health care professional(s) before making any purchases of membership, products and/or services on the lef.org Web site. The policy opinions expressed on this site, and on sites to which it may link, are not necessarily the views of the Life Extension Foundation and are not adopted for commercial purposes.

I think they've pretty much covered everything. I'm all for searching for alternative treatments, but (IMHO) they need to have some basis in fact. I do take SAMe, milk thistle and multivitamins (in addition to Urso, sulfasalazine, Singulair) - with the OK of my hepatologist. I take them due to promising research and trials, not necessarily in the US.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of Lori

Even though this article is not about PSC specifically it addresses the general auto immune disease which PSC is. I am very excited about this article and thought some of you might benefit.

Click the link to view article- http://www.lef.org/protocols/prtcl-017.shtml

[Guest guest]

I am not sure, just found it interesting. Now days every website has disclaimers to protect themselves from people that don't seek professional help or lack common sense.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

RE: Autoimmune disease article- a must read

I'm skeptical. Their own disclaimer states (http://www.lef. org/about_ us/lef_legal_ 01.htm - my emphasis):

Health-Related InformationThe information contained in the lef.org Web site is provided for informational purposes only and is not meant to substitute for the advice provided by your doctor or other health care professional. You should not use the information available on or through the lef.org Web site (including, but not limited to, information that may be provided by healthcare and/or nutrition professionals employed by, or contracting with, The Life Extension Foundation) for diagnosing or treating a health problem or disease, or prescribing any medication. Information and statements regarding dietary supplements have not been evaluated by the Food and Drug Administration unless specifically so stated

DisclaimersThe dietary and other substances discussed on this site may not have undergone evaluation and/or testing by the United States Food and Drug Administration or like agency of any other country. Risks that might be determined by such testing are unknown. Where these substances are dietary supplements, they are not intended to diagnose, treat, cure or prevent any disease. In some jurisdictions, some of these substances may be considered prescription drugs, controlled or contraband substances. Since the information published on the Life Extension Foundation web site is accessible to anyone throughout the world, the Life Extension Foundation does not give legal advice that may apply to any particular consumer. Consumers are cautioned to check with local, regionalized legal

counsel and/or health care professional( s) before making any purchases of membership, products and/or services on the lef.org Web site. The policy opinions expressed on this site, and on sites to which it may link, are not necessarily the views of the Life Extension Foundation and are not adopted for commercial purposes.

I think they've pretty much covered everything. I'm all for searching for alternative treatments, but (IMHO) they need to have some basis in fact. I do take SAMe, milk thistle and multivitamins (in addition to Urso, sulfasalazine, Singulair) - with the OK of my hepatologist. I take them due to promising research and trials, not necessarily in the US.

Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota

____________ _________ _________ __

From: @ yahoogroups. com [mailto:@ yahoogroups. com] On Behalf Of Lori

Even though this article is not about PSC specifically it addresses the general auto immune disease which PSC is. I am very excited about this article and thought some of you might benefit.

Click the link to view article- http://www.lef. org/protocols/ prtcl-017. shtml

[Guest guest]

I am not sure, just found it interesting. Now days every website has disclaimers to protect themselves from people that don't seek professional help or lack common sense.

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

RE: Autoimmune disease article- a must read

I'm skeptical. Their own disclaimer states (http://www.lef. org/about_ us/lef_legal_ 01.htm - my emphasis):

Health-Related InformationThe information contained in the lef.org Web site is provided for informational purposes only and is not meant to substitute for the advice provided by your doctor or other health care professional. You should not use the information available on or through the lef.org Web site (including, but not limited to, information that may be provided by healthcare and/or nutrition professionals employed by, or contracting with, The Life Extension Foundation) for diagnosing or treating a health problem or disease, or prescribing any medication. Information and statements regarding dietary supplements have not been evaluated by the Food and Drug Administration unless specifically so stated

DisclaimersThe dietary and other substances discussed on this site may not have undergone evaluation and/or testing by the United States Food and Drug Administration or like agency of any other country. Risks that might be determined by such testing are unknown. Where these substances are dietary supplements, they are not intended to diagnose, treat, cure or prevent any disease. In some jurisdictions, some of these substances may be considered prescription drugs, controlled or contraband substances. Since the information published on the Life Extension Foundation web site is accessible to anyone throughout the world, the Life Extension Foundation does not give legal advice that may apply to any particular consumer. Consumers are cautioned to check with local, regionalized legal

counsel and/or health care professional( s) before making any purchases of membership, products and/or services on the lef.org Web site. The policy opinions expressed on this site, and on sites to which it may link, are not necessarily the views of the Life Extension Foundation and are not adopted for commercial purposes.

I think they've pretty much covered everything. I'm all for searching for alternative treatments, but (IMHO) they need to have some basis in fact. I do take SAMe, milk thistle and multivitamins (in addition to Urso, sulfasalazine, Singulair) - with the OK of my hepatologist. I take them due to promising research and trials, not necessarily in the US.

Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota

____________ _________ _________ __

From: @ yahoogroups. com [mailto:@ yahoogroups. com] On Behalf Of Lori

Even though this article is not about PSC specifically it addresses the general auto immune disease which PSC is. I am very excited about this article and thought some of you might benefit.

Click the link to view article- http://www.lef. org/protocols/ prtcl-017. shtml