Sources of Information for MCS Folks

There are some excellent and inexpensive sources of information where you can get started on your education about MCS. Unless you get extremely lucky and find a doctor who knows about MCS, you will most likely be on your own. I tried to include the URL in each hyperlink in case you need to print this out for a friend who may not have direct access to a computer. I also will not take any payments to promote products that I like and use. I don't mind samples (or trips to Europe), but companies can't bribe me--it's MCS Safety First with me!

"Our Toxic Times"
A montly publication from the Chemical Injury Information Network (CIIN)
PO Box 301
White Sulphur Springs, MT 59645-0301
Chemical Injury Information Network @ biz-comm.com/CIIN/
This publication is considered by many to be the "gold standard" for information about MCS. This one is $15 a year (low income), $30 a year regular subscription, and $75 for professionals. This newsletter has terrific advertisements as well as great articles. Please keep in mind that this amazing publication is put out by a husband and wife team and it usually has a financial loss at the end of the year. If you can give a substantial donation in addition to your subscription, please do so. It will go to good use.

N.E.E.D.S., Inc.
P.O. Box 580
6010 Drott Drive
East Syracuse, NY 13057
1-800-634-1380 Fax 1-800-295-NEEDS
www.needs.com
Email: needs@needs.com
They have everything under the sun and at VERY reasonable prices, too! Ask the knowledgeable staff if you want something you don't see in the catalog. I can't say enough good things about this company. For a change, they treat MCS people like ROYALTY! What a delightful change from the way most of us are treated by the general public and the medical profession.

MCS Information Exchange
2 Oakland Street
Brunswick, ME 04011

Allison Johnson publishes a cumulative survey of MCS treatments, stories, and non-judgemental information that folks have tried. No one treatment is suggested--only raw data is given and you can decide for yourself what may be worth your time. Purchasing the entire survey is strongly suggested, as each new publication builds on the previous publications. Send a SASE to the above address to find out the going rate for the full package. Currently, it is running about $20 for everything, and it is well worth it. Allison recently sent out a notice that she is working on a video that explains the facts about MCS. Ask her about that if you would be interested.

MCS Referral & Resources
508 Westgate Road, Baltimore MD 21229-2343
Phone: 410-362-6400, Fax 410-362-6401
MCS Referral & Resources @ www.mcsrr.org/
Professional outreach, patient support, and public advocacy devoted to the diagnosis, treatment, accommodation, and prevention of Multiple Chemical Sensitivity Disorders.
These folks are worth their salt! They are very, very busy so please be patient if it takes a while for someone to get back to you.

Lowry Drug Company, Inc.
750 Hartness Road
Statesville, NC 28677, USA
704-873-2247 or 800-456-8806
Fax 704-873-4050
Compounded medications made to your and/or your doctor's specifications can be ordered through the mail. The products offered are medical lollipops, medicated lozenges,topical and oral sprays, creams, lotions and gels, modified release doses, opthalmic products, alternate dosage forms, unavailable preparations, oral troches, hospice formulations, pediatric dosages, geriatric dosages, nasal sprays, lip balms, suppositories, urethral inserts, preservative/dye/binder-free preparations and nutritional supplements. While they are in a small town in a state not exactly known for progressive health care (hello--this state produces more tobacco in the USA than any other state), but this place is a rare jewel that should make us North Carolinians proud. If you use their services, please tell them how you learned about the pharmacy.

I know that many people with MCS live in countries other than the USA, which is where this website is written. For my Australian friends with MCS (believe it or not, I actually made it to that beautiful country with MCS and I LOVED it there!), I realize that you have some issues which are specific to your country. Help is at hand for you, thanks to:
Diana Buckland, who is working on a
GLOBAL RECOGNITION CAMPAIGN She is working to get people to recognize Multiple Chemical Sensitivity and other chemically induced illnesses, diseases & injuries affecting civilians and military personnel. You can contact her at:
MCS Global Recognition Campaign @ mcs-global.org or at:
Diana Buckland dbucklan@bigpond.net.au
4 Mia St. Kallangur 4503 Queensland Australia

Orange Glo International
PO Box 3998
Littleton, CO 80161
www.greatcleaners.com
1-800-781-7529
I use a lot of the products from this company, but I will warn you that they are made from orange oil and leave a strong orange smell for a SHORT while. Their Oxyclean laundry detergent products have no smell and the stain remover capability is as good as chlorine bleach (just make sure the water is hot to activate it!). I can't live without these products, but strong natural smells don't bother me. At least TRY looking through the catalog to see if there is anything that would interest you and talk to the staff--they are quite knowledgeable about the products. I really do recommend the Oxyclean to use instead of bleach when I do my laundry for both my whites and colors! Warning--the wood finishing products have petroleum distillates in them, and the smell lasts forever. Stick to the de-greasing and laundry formulations. I can testify that the Orange Clean product (a degreaser) got grease stains from firefighter's boots out of my carpet that had been there for over a decade! The cleaner did NOT give me asthma and it merely smelled like strong oranges (which dissipated within 10 minutes). If you can't tolerate any citrus smells, stick to the Oxyclean detergent (both liquid and powder) and the Oxyclean bleach--NO SMELLS and they do the job!!! I even found a product called Kaboom that got the hard water stains off my white porcelain bathtub without overwhelming me with fumes! I haven't tried the soap or hand cleaner yet, so I can't comment on them.

 

There are some online support groups out there, as well as information on the internet. I have the address for four, and will list any others that are sent to me that seem appropriate.


Send some email to MCS-CI Listserve and send a blank message to subscribe. You can also go to http://www.onelist.com/group/MCS-CI-exile/

Another MCS-related online support group has gotten started. Visit Overlapping Sydromes Chronicles @ www.oschronicles.ca/ to see how you subscribe and what they have to offer. It's a relatively new group, so I don't know a whole lot about it. They cover MCS, myofacial pain, fibromyalgia, chronic pain, and CFIDS.

A reader suggested an interesting Yahoo! MCS site. It's called Share-FAQ and you can get the info about signing up at SHARE-FAQ @ groups.yahoo.com/group/SHARE-FAQ. According to the person who suggested it, it's a real goldmine of info. Sign up, try it, and if you don't like it, you can always unsubscribe! Ah, the ease of getting out of a newsletter when you have a computer!

There is an EXCELLENT newsletter that comes to your computer about once a week called Rachel's Environment and Health News. To start your own free subscription, send E-mail to listserve@lists.rachel.org with the words SUBSCRIBE RACHEL-NEWS YOUR FULL NAME in the subject heading. I like this newsletter a lot, and it keeps you up to date on many different environmental topics. You can visit their comprehensive website (it's even in Spanish if that's how you wish to read it!) at Rachel @ www.rachel.org

If you have a good public or medical library near you that has access to the INFOTRAC system, you're in luck. Go to the "Health" section and use the keywords, "chemical sensitivites." You will be astounded at how much information will pop up on the screen for your perusal! Your librarian will be happy to help you if you aren't a computer genius--just take a copy of this page with you, and he/she will know what to do. Don't overlook the free sources of information that can be right in your city--just ask around; you can even access some of this information from your home if you have a library card. A phone call to the library will let you know if they subscribe to this service and if you need to make an appointment.

 

Books!

Non Toxic, Natural and Earthwise by Debra Lynn Dadd.

Living Healthy In A Toxic World by David Steinman and R. Michael Wisner, with foreword by Kirstie Alley

An Alternative Approach To Allergies (revised edtion) by Theron G.Randolph, M.D. and Ralph W. Moss, Ph.D.

 

Great links to more MCS info!

MCSurvivors @ www.mcsurvivors.com
This site is back and better than ever! It's full of extremely useful information. Why reinvent the wheel?

Jacki B's Wonderful MCS Web Site @ www.supernet.net/~jackibar/mcs.html
Another good compilation of MCS links, information, and coping tips. Once again, I will be lazy and make you go there! I hate to retype everything I find!

Environmental Health Network @ users.lanminds.com/~wilworks/ehnindex.htm
This site has some terrific resources if you scroll down past the parts that are mainly of local interest. I enjoyed cruising this site! Head for the "M" page of General Resources for a wonderful listing of just about everything relating to MCS.

Hospital Accomodations for People With MCS @ unix.adept.net/~mcsinfo/support.htm
Suggestions for hospitals regarding specialized care for MCS patients.

Safer Travel Directory @ www.thegarden.net/mcs/safertravel.html
NOTE: This guide is not always up to date. CALL and CHECK with anyplace listed in ANY guide to make sure that they are still offering places for people with MCS.
This is a listing of "safe" hotels, MCS-friendly inns and vacation areas. If you have to travel, this one is a must!
A personal observation is required here: I tried one of the "Evergreen" rooms in an Embassy Suites hotel and the smell made me walk right back out again. I tried three other rooms, and they ALL smelled so strongly, I couldn't stand them. I think the rooms are cleaned for germs and standard allergies, not for people who are chemically sensitive. The friend who was with me (who is NOT chemically sensitive) couldn't stand to be in the rooms either. I would SUGGEST that if you are going somewhere and have booked an Evergreen room, go to one in your town or one within driving distance and check one out first before you go across the country and get an unpleasant surprise. Others with MCS may find these rooms fine, but I got an asthma attack and lost my voice IMMEDIATELY upon entering these rooms. I have had better luck with plain old non-smoking rooms.

Bed and Breakfast places are usually old houses that have fireplaces in them. Be wary of these--call ahead to find out if they have electric, gas or wood cooking stoves and/or fireplaces. I have only found one B&B that is specifically designed for MCS folks, and that is the Pride and Joy Resort @ www.pridejoyresort.com in South Melbourne Beach, FL (321/733-7804). The waiting list to get a room is very, very long--fair warning!

MCS Housing @ http://www.speakeasy.org/~habib/mcs/resources.html
I don't know of any housing information personally, but this site is a great help. Give it a try!

Multiple Chemical Sensitvity Resources @ members.tripod.com/~Barbara_Robertson/MCS.html
A beautifully designed page with a "question and answer" format. This page also has some excellent links and is worth a visit. I may have to hit up the webmistress for some design tips--she's GOOD!

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