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Here you can read more about MCS :


http://www.freenet.edmonton.ab.ca/~jmay
http://www.healthgate.com/HealthGate/MEDLINE/search.shtml
http://www.2nature.org/erc and search on "air pollution"
http://www.ourlittleplace.com/
http://www.execpc.com/~goodscnt/misc/safety.html
http://www.best.com/~immune


Here you can read more about MF/CTCL of PUVA

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SPECIFIC INFORMATION ABOUT MF/CTCL AND PUVA

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OncoLink cutaneous t-cell lymphoma page:
http://oncolink.upenn.edu/disease/t-cell


PDQ data base-NCI information on mf:
http://noah.cuny.edu/cancer/nci/cancernet/100098.html


Abstracts of articles from Cancetlit database:
http://cancer.med.upenn.edu/cancernet/95/oct/710400.html


The Cutaneous Lymphoma Cooperative Group
Judi VanHorn, Editor
c/o Department of Dermatology
University of Cincinnati
PO Box 670523
Cincinnati, OH 45267-0523
Phone: (513) 558-6805.

This organization provides a quarterly newsletter and will send you a large packet of information re: mycosis fungoides/CTCL.

 

 

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INFORMATION ON SPECIFIC TOPICS PERTAINING TO MF/CTCL

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"Malignant Melanoma in Patients Treated for Psoriasis with Methoxsalen (Psoralen) and Ultraviolet A Radiation (PUVA)" --abstract of article in New England Journal of Medicine by R.S. Stern, et. al.

"Should PUVA be abandoned?"-- Editorial on PUVA and melanoma risk from New England Journal of Medicine by K. Wolff: http://www.nejm.org/public/1997/0336/0015/1090/1.htm or http://www.nejm.org and click on "Search Past Issues" icon.


Cancernet article on Pruritus (itching). Note, especially, the section called INTERVENTIONS:
http://www.noah.cuny.edu/qksearch.html Click on CANCER; look under Symptoms; Click on PRURITUS
or try http://oncolink.upenn.edu/pdq_html/ Click on section entitled "Cancer Screening, Prevention, and Supportive Care Statement"; Scroll down to chart entitled "Other PDQ Topics"; click on Pruritus


Thrive@Health Medical Database-For brief article on pruritus type "pruritus" into search engine window. Look for article entitled "Postgraduate Medicine 1996 Jan: Treating pruritus":
http://pathfinder.com/thrive/health/lookitup.html


Medline article containing info on mf and histoplasmosis:

  1. First go to medscape at http://www.medscape.com
  2. Then register, (it's FREE), by clicking the link at the top of the page.
  3. Then click on: Infectious diseases
  4. Next click on: Keywords link (near top of page)
  5. Next click on: Antifungal
  6. Next click on: Infections in Oncology-Fungal Infections in Cancer Patients. The article is dated Aug 12, 1996

Abstract of article on Breast Implants and ctcl:
http://www.newsfile.com/protect/women/public/2383673.htm


Article on methotrexate:
http://www.rxlist.com/cgi/generic/mtx.htm


Phototherapy equipment company- PhotoTherapeutiX, 1260 Palmetto Ave., Suite C, Winter Park, FL 32789 (800)-290-7577 Fax: 407-628-4160
http://www.photothrx.com


Article: Clinical Applications of All-Trans-Retinoic Acid in Hematologic Malignancies- includes a brief description of the use of retinoids in the treatment of mycosis fungoides: http://daisy.moffitt.usf.edu/cancjrnl/v2n6/    Click on document entitled pharmacotherapy.htm


Abstract of article on long term risks of Retinoid herapy from the Archives of Dermatology:
http://www.ama-assn.org/sci-pubs/journals/archive/derm
Follow links to vol_131/no_11/abstract.htm


National Psoriasis Foundation
http://www.psoriasis.org


NPF (National Psoriasis Foundation) article on uva/uvb:
http://www.psoriasis.org/pharmnews/8-2/uva_uvb.html


For VERY graphic pictures of later stage mf/Sezary,

  1. consult University of Erlangen (Germany?) photo database: http://www.erlangen.de/
  2. Then click on button labeled "Gesundheit". (This button is located on the second row from the bottom. The word Gesundheit means Health).
  3. Next, click on Kliniken.
  4. At the top of the Kliniken page you will see a button labeled Suche. Click it on. (Suche means Search.)
    You should now be at the Query Interface to the FAU Harvest Server Broker.
  5. Type "mycosis fungoides" (without quotes) into the window. You should get 15 hits. Just click on the highlighted link for each hit. Not that the last one is a general image index.

Information on various hypotheses for development of mf:
http://info.med.yale.edu/cgi-bin/wwwwais Just enter the key words "mycosis fungoides". Leave the index set at SEARCH THE YALE-NEW HAVEN MEDICAL CENTER WEB. Then select the first article entitled Lynn_D._Wilson_M.D._M.P.H..html


Article on pathogenesis of ctcl:
http://www.medscape.com
You will need to fill out a registration form to secure a medscape ID and Password to access this information. To get ID and Password, click on the HELP button at the bottom of this page. (It's a bit of work, but worth it.) This database is intended for medical professionals, but is available to consumers as well. Currently, there is no fee.
Once you have registered, return to the original Web page you started with, click on Oncology, then click on current abstracts. Check listings under Abstracts section.


Information about Targretin:
http://www.lymphoma.org/  Click on Clinical Trials Information icon. Then look under Non-Hodgkins T cell.

 

 

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CLINICAL TRIAL INFORMATION

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Link to Seragin clinical trials:
http://oncolink.upenn.edu Click on Clinical Trials. Then search using the key words fusion toxin.


Seragen home page:
http://www.netsci.org/Resources/Biotech/Seragen/top.html


News story about fusion toxin treatment for mf/ctcl:
http://wlbt.teclink.net/health/fusion.html
Contains some misleading info.


General clinical trial information at CenterWatch web site:
http://www.centerwatch.com


BioCryst Pharmaceuticals-manufacturers of BCX-34:
http://www.bio.com/companies/biocryst.html


News info on BCX-34
http://www.businesswire.com/webbox/bw.050396/106392.htm or try just http://www.businesswire.com

Information on Phase I clinical trial to evaluate VIMRxynO (synthetic hypericin) as a topically applied, light-activated therapy for specific skin diseases including psoriasis, cutaneous T-cell lymphoma, warts, and Kaposi's sarcoma.

http://www.vimrx.com Click on PRESS RELEASES, then click `97 ABSTRACTS.

 

 

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UV PROTECTIVE CLOTHING

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SunSmart-A Canadian company:
http://www.interspin.com/sunsmart/index.htm


Sun Precautions-an American company:
http://www.solumbra.com/presltr.htm or, for their home page
http://www.solumbra.com/sphome.htm#home

Toll free number: 1-800-882-7860
Address: Sun Precautions, Inc.
2815 Wetmore Ave.
Everett, WA 98201

 

 

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GENERAL RESOURCES FOR CANCER

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CancerGuide; Steve Dunn's Cancer Information Page:
http://cancerguide.org/  One of the BEST general guides to cancer. A MUST read!


Database of information on cancer and other topics:
http://seidata.com/ Hit PIT button, then hit NetWellness button.
Also try http://seidata.com/marriage/rcancer.html
But it may no longer be active. Let me know if it is.


Another large database of information on cancer:
http://www.noah.cuny.edu/qksearch.html Click on CANCER


Physician's Data Query (PDQ):
http://oncolink.upenn.edu/pdq_html/


Oncolink at University of Pennsylvania:
http://oncolink.upenn.edu/disease/t-cell


Oncolink-general address:
http://oncolink.upenn.edu/


Cancer Care:
http://www.cancercareinc.org.


The Leukaemia Research Fund-(BRITISH)
http://phoenix.jr2.ox.ac.uk/LRF/
Also check out:
http://www.leukaemia.demon.co.uk/websites.htm


http://www.cancerhelper.com/

Welcome to CancerHelper.com, we are here to give you all the general information you need to understand cancer. We give you an overview of cancer and some of the risk factors you should be on the lookout for. In addition, there is information on how you can detect cancer early to give you better chance of leading a healthy life along with some general symptoms that may be signs of different types of cancer. Finally, we review some treatment options that are available to those with cancer to let you know what to expect and help prepare you for what lies ahead. Browse the site to find all the information you need to learn about cancer in general.

 

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HOSP./UNIVERSITY DEPARTMENTS of DERMATOLOGY, ONCOLOGY, etc.

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List of medical schools worldwide that are online:
http://www.noacsc.ohio.gov/mercer/pw/phs/medschol.htm


Arizona health sciences center:
http://www.ahsc.arizona.edu/


Boston U. Medical Center Department of Hematology-Oncology:
http://med-med1.bu.edu/oncol.html


H. Lee Moffitt Cancer Center in Tampa Florida:
http://daisy.moffitt.usf.edu/


John's Hopkins Oncology Center:
http://www.med.jhu.edu/cancerctr/hematol/hemmain.htm


M.D. Anderson Hospital, Texas:
http://www.mdacc.tmc.edu/~immuno/duvic.html


Mie University Department of Dermatology, Japan:
http://www.medic.mie-u.ac.jp/derma


for campus phone number to Stanford U. mf clinic see:
http://directory02.stanford.edu/virtual/campusinfo/ or http://www-directory.Stanford.ORG/virtual/campusinfo/
Search database using key words: mycosis fungoides


U. of Arkansas Medical Center (UAMC):
http://www.uams.edu/
Department of Dermatology is not on line as yet. For latest phone number and location of Dr. Patrick Carrington, department of Dermatology, (presumed) specialist in mf/ctcl, click on The UAMS Campus Phone Book. Current phone listing is 501-686-5110


U. of Cinncinatti
http://www.med.uc.edu/htdocs/medicine/uccom.htm
Dermatology department is on line, but no information is available on mf support group. Also see Barrett Cancer Center. In addition, many health related links.


U. of Iowa Dermatology Department:
http://tray.dermatology.uiowa.edu/home.html


U. of Michigan Medical Center Department of Dermatology:
http://www.med.umich.edu/derm/index.htm


Yale University Department of Dermatology:
http://info.med.yale.edu/dermatology/


Yale Department of Dermatology-photophoresis info:
http://info.med.yale.edu/dermatology/clinical Then open directory entitled: photopheresis.html


List of Skin Diseases Research Core Centers:
http://www.nih.gov/niams/reports/directrp.htm

 

 

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GENERAL INFORMATION ABOUT LYMPHOMA/LEUKEMIA

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Lymphoma Research Foundation of America Inc.:
http://www.lymphoma.org/


Mike's Lymphoma Resource Page:
http://www.alumni.caltech.edu/~mike/lymphoma.html


Non-Hodgkin's Lymphoma Page:
http://www.westvirginia.net/~sigley/NHL_Web_Site.htm


Granny Barb's Leukaemia Links:
http://www.acor.org/diseases/hematology/Leukemia/

 

 

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ARCHIVE AND SUPPORT GROUP INFORMATION

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Article by Lynne Lamberg entitled: "Online Support Group Helps Patients Live With, Learn More About the Rare Skin Cancer CTCL-MF", in May 14, 1997 issue of The Journal of the American Medical Association, (pages 1422-23). Full text is available online at the AMA website:
http://www.ama-assn.org/jama
You need to register at the website (it's free), then click on "latest issue" or select May 14, 1997 from the list, or check their archives.


Archives of all the cancer lists:
http://cure.medinfo.org/


Web page for BMT-Talk:
http://www.ai.mit.edu/people/laurel/Bmt-talk/bmt-talk.html


Web page for Hem/Onc:
http://walden.mo.net/~lackritz/hemonc.html


list of support groups-try OncoLink from the U. of Penn:
http://cancer.med.upenn.edu/


Search the Internet for other newsgroups/mailing lists by using Deja News:
http://www.dejanews.com or, by using Reference.com: http://www.reference.com
or, by using Liszt:http://www.liszt.com

 

 

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MISCELANEOUS LISTINGS

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National Library of Medicine:
http://www.nlm.nih.gov/


Merck Manual:
http://www.Merck.com

Be forewarned that this supposedly authoritative tome may contain some outdated and inaccurate survival statistics for mycosis fungoides.


Comprehensive overall Dermatology ressource: Society of Dermatology Physician Assistants
http://www.pacifier.com/~jomonroe
Email: jomonroe@pacifier.com.

Contains link to some 80 Dermatology Web sites


Table of contents for 18 Dermatology journals:
http://www.info-med.co.uk/adref/derm/derm_t.htm


New England Journal of Medicine:
http://www.nejm.org/


FDA (Food and DRUG Administration):
http://www.fda.gov/fdahomepage.html


NORD (National Organization on Rare Disorders):
http://www.pcnet.com/~orphan/


"The Median Isn't the Message" by Jay Gould:
http://cancerguide.org/median_not_msg.html
Discusses the nature of survival statistics and cancer and why we should NOT pay as much attention to them as we ordinarily do. Written by a renowned scientist and 15 year survivor of mesothelioma, formerly considered a virtually nonsurvivable cancer. EVERY CANCER PATIENT SHOULD READ THIS FIRST!!


"Confronting Cancer Through Art"; an online exhibition:
http://www.oncolink.upenn.edu/.


Health Information Highway:
http://www.stayhealthy.com/index.htm
Contains lots of interesting medical links.


WALGREEN nationwide RX service:
1-800-Walgreen ( 1-800-925-4733)

WALGREEN's Home page:
http://www.walgreens.com/index.html


Traveling far from home for treatment? Check out the National Association of Hospital Hospitality Houses Inc.:
http://visit-usa.com/hhh/


Information concerning employment discrimination and cancer:
http://www.aomc.org/cancerandADA.html and http://www.usdoj.gov/crt/ada/adahom1.htm


The Foundation for Infinite Survival- This is a life-extension organization. But do not be put off by the "wierdness" of it. Check it out for their info services:
http://fis.org/index.html


Talking Books, a commercial site, offers a biography of actor Paul Eddington, who had mf:
http://www.orma.co.uk/catnonf.htm#eddington


Melatonin information, commercial site:
http://www.teleport.com/~jor/


Note that people with lymphoma are advised NOT to use Melatonin.


Articles on hypnosis:
http://pathfinder.com/@@XhQ37AYAnZorR3a2/thrive
Click on Look-it-up database, then use keyword: hypnosis


Information on Essiac:
http://www.livelinks.com/sumeria/

 

 

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GENERAL HEALTH INFO DATABASES

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Interactive Patient Help File:
http://medicus.marshall.edu/help
Check out parent directory.


Women's Health Weekly Public Database:
http://www.newsfile.com/homepage/psearch.htm


RxList-searchable index on drugs and medication interactions:
http://www.rxlist.com


U.S. Government Department of Health and Humam Services:
http://odphp2.osophs.dhhs.gov/consumer.htm


The Health Gazette:
http://www.freenet.scri.fsu.edu/HealthGazette/gazette.html


The Virtual Hospital:
http://www.vh.org/


HealthAnswers:
http://www.healthanswers.com


Columbia Health Care "Virtual Body" and "Virtual Hospital":
http://www.columbia.net


MedAccess-general health information as well as details on physicians and nursing homes:
http://www.medaccess.com


Mayo Health Oasis-general health information:
http://www.mayo.ivi.com


HealthGate-general health information:
http://www.healthgate.com


Healthgate-free access to medline and cancerlit databaases as well as general health information:
http://www.healthgate.com/


HealthWorld Online-general health information:
http://www.healthy.net


Thrive-general health information
http://www.pathfinder.com/HLC


Medsite Navigator:
http://www.MedsiteNavigator.com/


Medical Matrix-for general medical information:
http://www.medmatrix.org/


Today's Research News:
http://biomednet.com./hmsbeagle/


AOL NETFINDs-a new web search engine that is available to members and non members:
http://www.aol.com/netfind


Healthfinder-provides reliable health info with links to more than 550 other Web sites, links to on line documents, including health publications and technical literature. Connection to on-line discussion and self help groups. Data bases that can be searched by topic: and FAQS on selected topics:

http://healthfinder.gov


Reuters medical news website:
http://www.reutershealth.com


AMA Medical News Site
http://www.ama-assn.org/insight/


Here are some web addresses for free searching of Medline:
http://www.ncbi.nlm.nih.gov/PubMed/
http://www.healthgate.com/Healthgate/MEDLINE/search.shtml
http://www.medscape.com/misc/FormMedlineInfLive.html
http://biomednet.com/db/medline

 

 

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Here you can meet my friends :

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( http://www.blazingtattles.com ). (Claire Gilbert)
Claire Gilbert has MCS like I have. Claire sends out *Blazing Tatles*


( http://www.ourlittleplace.com/ ) (Jacki Barineau)
Jacki does have MCS too. Jacki has put up a site in memory of Julia Kendall, who passed away far too young. Julia fought for right for people with MCS, and to get people to understand the damages made by use of chemicals of all kinds.


( http://www.freenet.edmonton.ab.ca/~jmay ) (Julie May)
Julie has MCS, and does know a lot about MCS.


( http://www.best.com/~immune/stephanie/) (Stephanie)
Her you can read the story about Stephanie - a very young girl, who got extremely sick after being exposed to perfume. Jeanne, Stephanie's mom, fights hard to make Stephanie's life as safe as possible.


My friend Mel Winkelbauer has a site where she tells a little about herself and her familu - You find the site here :
http://www.erie.net/~melwink/

 

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Other interesting links

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http://members.aol.com/wsmcsn/index.htm
Washington State Multiple Chemical Sensitivity Network


http://www.coem.com/index.html#menu
Center for Occupational & Environmental Medicine


http://www.cancerbacup.org.uk/info/lymphedema.htm
Cancer information from England


 

http://www.ciin.org
Chemical Injury Information Network


http://www.mcsrr.org/
MCS Referral & Resources


http://www.soapworks.com/
Soapworks - safe soap/cleaning products


http://www.angelfire.com/art2/joan/mcs.htm
Multiple chemical sensitivity sweat shirts and t-shirts. Create an awareness!


http://www.burningissues.org/
Burning Issues/Clean Air Revival


http://www.chem-tox.com/
Chemicals found in Indoor Air


http://www.independentliving.org/STANDARDRULES/StandardRules1.html
Standard Rules on the Equalization of Opportunities for Persons with Disabilities
(FN's Standardregler om Lige Muligheder for Handicappede - tiltrådt af Danmark i 1994)


http://www.geocities.com/HotSprings/Spa/4415/index.html
The Multiple Chemical Sensitivities Primer - Where to start looking for information about MCS


http://www.n-i.com/NCchem/
North Carolina Chemical Injury Network


http://www.epa.gov/docs/opptintr/chemfact/index.html
Chemicals in the Environment: OPPT Chemical Fact Sheets


http://caq.com/caq53.gws.html
Gulf War Syndrome Covered Up


http://www.ssa.gov/SSA_Home.html
USA's Social Security Online


http://www.cdc.gov/
Centers for Disease Control and Prevention (CDC)


http://www.ou.edu:80/cems/
School of Chemical Engineering and Materials Science at the University of Oklahoma.


http://galaxy.einet.net/galaxy/Medicine/Medical-Specialties.html
Medical Specialties


http://www.med.nyu.edu/research.html
New York University Medical Center


http://www.interlog.com/~environ/
Environmental Health Group


http://charlotte.med.nyu.edu/niehs/NIEHSCenter.html
NYU NIEHS Center


http://www.envirolink.org/
Envirolink Home Page


http://www.sig.net/~allergy/welcome.html
The On-Line Allergy Center


http://www.epa.gov/docs/EPA-GENERAL/1995/October/Day-04/pr-626.txt.html
Proposed Guidelines for Neurotoxicity Risk Assessment


http://www.danmark.dk/hr/owa/danmark.dk?side=myndigheder
Authorities and organisations in Denmark


http://www.katalog.tele.dk/
E-mail catalog in Denmark


http://www.copenhagenpictures.dk/
Copenhagen pictures


http://www.garlicpage.com/
Info/recepies with garlic


http://www.ing.dk/
Ingeniøren on the net


http://www.astma-allergi.dk/
Danmarks Astma-Allergi Forbund homepage


http://www.astma-kbh.dk/
Astma-Allergi Foreningen in Copenhagen


http://www.cam.org/~intsci/people.html
Want to find someone on the Internet? These are a few tools available to help find E-mail address, organization, host, domain, phone number, etc. through the Internet.


http://www.auh.dk/akh/afd/arbmed/uk/index.htm Clinic of Occupational Medicine, Århus Kommune Hospital
 

FABULOUS ARTICLE ON HOW LIVER FUNCTIONS
http://www.positivehealth.com/permit/Articles/Nutrition/cabot37.htm
 

PORPHYRIA INFO
http://www.mall-net.com/mcs/porphyria.html

HYPERCOAG BLOOD AND CFS INFO
http://hemex.com/cfs/
http://www.ctaz.com/~donavan/evidence.htm

OXYGEN (HYPOXIC CONDITIONS) AND OTHER GOOD IDEAS
http://www.ozemail.com.au/~olbas/chapter2.html
http://www.ozemail.com.au/~olbas/chapter1.html
http://www.phymac.med.wayne.edu/FacultyProfile/penney/COHQ/figco10.htm


http://www.drbronner.com/ - Here you can read about Dr Bronner's Castile soap

Castile soap is some of the best I have ever tried. It dissolves i.e. grease spots - like them around the stove - and it doesn't crave strength. I can only recommend it. Since I bought it, I have had a spray bottle next to the sink with a solution of water and a tiny bit of Dr. Bronners castile Soap - you don't have to use very much - so it last for a long time. - One day Mikael came home with a quite large oil stain on his sweat shiret. As I had read and discovered that castile soap dissolve grease, I poured castile soap all over the stain, WITHOUT RUBBING IT IN, rolled the sweat-shirt together and legt it like that for apx. 3 hours before it went in the washer. When I took it out, the stain was almost gone. THAT was quite an impressive experience - oil is something which is very difficult to get off clothes along with red wine. I haven't had a chance to try it on red wine - will let you know, how it works,

I HAVE NOT BEEN ORDERED OR PAYED TO SAY THIS ABOUT THE RPODUCT - IT IS MY OWN PERSONAL OPINION ABOUT THE PRODUCT.


HERE ARE SOME MEDICAL INFO - MOST IN DANISH
http://www.medicus.dk/aspForside/inter.asp


http://www.mst.dk/homepage/ - The Danish EPA - Environmental protection Agency


http://www.healthatoz.com/ - A search engine concerning health


Safety Alerts - food recall information.

http://www.safetyalerts.com/rcls/category/food.htm


Clinical Considerations for Specific Herb-Drug Interactions & Potential Adverse Effects of Herbs this list may be found at:

http://www.healthmall.com/specific.html


The Danish Veterinary and Food Administration
http://www.levnedsmiddelstyrelsen.dk/java_enab/f_uk.html


Did you know that drinking tea may help you lose weight? A recent scientific study supports green tea's ability to burn fat and increase metabolism.

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