From Our Readers – Comments & Suggestions 06-02-10

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Undisclosed Chemicals in Perfumes

The Campaign for Safe Cosmetics and the Environmental Working Group analyzed a few top “celebrity name” perfumes & body sprays, and they found 38 chemicals in them that are not listed on the label (one product had 24). [See “Not so Sexy – Hidden Chemical in Perfume and Cologne.”]

A lot of the chemicals they found “have never been assessed for safety in personal care products,” and some of them are “associated with allergic reactions & hormone disruption.” They also show that almost 20% of the chemicals that ARE listed in these types of products have never been safety-tested either. – A

[Note: check out the EWG’s SkinDeep Cosmetics Safety Database to see the ingredients and safety ratings for thousands of branded cosmetic and personal care products.]


Support Groups for Interstitial Cystitis (Painful Bladder Syndrome)

The Interstitial Cystitis Association website has contact info on lots of support groups in the US and other countries []. You can also find links to some online support groups and blogs, and tips for getting a local support group started. I found some really helpful news & information, including a “doctor finder.” – E


Perfume & Sore Throat?

Does anyone else get this? Like you smell some awful perfume and “boom” instant sore throat. Or, going near the candle section at Wal Mart or Target. My family does not believe that I can immediately get a sore throat from something I smell. Is it just me or are there others that share this? – M


New, Stronger Warnings on Tramadol

I know many of us are helped by tramadol [trade names Ultram® & Ultracet®], so we should be aware of the stronger label warnings (on risks of interactions, overdose, “mis-use” and suicide) that have been communicated to doctors. Here’s the news release I found with links to the letters that were sent out to doctors. – S


Insights Into the Use & Misuse of Mind-Body Therapies

Re: “Secret to success with Mind-Body Therapies?”  by Dr. William Collinge, director of the online FM Wellness project (still recruiting FM & ME/CFS patients free).

Loved the comparing of the old paradigm way of thinking with the new paradigm way of thinking [about positive attitude, hope, and expressing emotions, etc.] I thought it was explained very well. It is not easy making the shift.

For me, there have been three things that have helped the most to facilitate the journey from the old to the new, that being reading A Course in Miracles; second, Don Ruiz’s, Toltec Elder’s book, The Four Agreements; and, third, studying with Rainbow Eagle, who regularly teaches on “Victimology 101,” as he calls it.

Rainbow Eagle has a new book out titled A Native American’s Look Through Christianity, which I think some may find helpful in understanding concepts such as judgment and condemnation, blame and guilt, and other emotions that can keep you stuck…. – R


A Video About MS Everyone Should Watch

Here’s another great YouTube on multiple sclerosis – “The Show Must Go On” – A


Sun Screens to Steer Clear Of

Check out the Environmental Working Group’s 2010 Sunscreen Safety Information. They have a list of the safest sunscreens, a database where you can find information on just about any sunscreen product, and a “Hall of Shame” with a focus on ‘baby’ anti-sunburn UVB-blocking products that, however, don’t block damage from deep-penetrating UVA rays. – W


Funny Idea Got Me to Start Walking

I was talking to my PCP and she suggested walking. She asked me if I had a dog, as then you have no choice but to walk. I told her I am not allowed dogs in my duplex and she said, “How about a pretend dog?” So I have been walking my pretend dog and I don’t have any mess to clean up!

Do you remember the leashes that made it look like you are walking an invisible dog? I wonder if they still make them? – G


Walking Was Great But Wrong Shoes Did Me In

I started out at a block using my cane. At the end of the year I was walking 3 miles 5 days a week…no cane. I would stress the importance of proper footwear. I ended up with plantar fasciitis from the wrong shoes… – M

Note: to learn about plantar fasciitis, watch this Mayo Clinic video –


Discovery Channel Videos for Healthcare Pros Can Help Us Too

They are meant for healthcare providers to earn CME (Continuing Medical Education). Patients could find them interesting too.

It’s a big list: I pasted some of the titles and descriptions here that were applicable to us.

Improving Treatment of Chronic Pain
Available for credit through February 13, 2012
A panel of medical experts advise physicians on the treatment of chronic pain among patients.

Fibromyalgia: From Diagnosis To Treatment
Available for credit through May 24, 2010
This program addresses the pathophysiology factors involved in the proper diagnosis and treatment options for fibromyalgia.

Managing the Link Between Depression and Pain (no longer available for CME credit)
Learn the latest information on depression and pain. We bring together a group of experts to discuss physical symptoms of depression, biochemical causes of pain and depression, and appropriate treatment options.

Appropriate Use Of Opioid Therapy For Patients With Pain
Available for credit through December 31, 2010
A discussion on effective pain management for patients with acute and moderate to severe chronic pain who have not responded adequately to other therapies.

• Also one on migraines, two on low sexual desire, lots on obesity, lots on diabetes, etc. – W


Affording Your Prescriptions

Everyone is concerned about cutting costs on everything these days, including prescriptions. So I thought I’d share a few tips that might help.

1. See if you can get a generic that is on that list of several hundred drugs available at WalMart for about $4.00 for a 30-day supply. Target and Fred Myers chains also have the same program. Check that list and see if any medication you take is on it, and get your prescription transferred there if it would be cheaper. Also, don’t be shy about printing out the list and asking your doctor about it. Sometimes there are generics or substitutes available for medications you may be currently taking.

2. Check the inserts for your prescription drug’s manufacturer. If you don’t have one, ask your pharmacist for the insert, or look it up online. Contact the maker (they usually have toll-free phone numbers) and see if they have a prescription assistance program – you’d be surprised how many of them do. The good news is that drug makers Pfizer, Merck, Abbott, and AzstraZeneca have created or expanded their Prescription Assistance programs.

3. You may be interested in checking out the Partnership for Prescription Assistance. Their mission is to “help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Many will get them free or nearly free.” Also, take a look at (These are not WebMD sites, and we cannot guarantee content).

4. Use the pharmacy at CostCo, a warehouse store which can buy in bulk so their prescription prices are very low. You do not have to be a CostCo member to use their pharmacy.

5. Ask your doctor about samples or coupons he or she may have available for patients.

I hope those suggestions help a little. – a Staff Member at WebMD


An Anti-Aspartame Activist’s Website is a very informative site on the history of aspartame. Many years ago when I was a gum chewer, probably at least 15, I was a big Trident chewer. Of course, this stuff is sweetened with NutraSweet (Aspartame). This was a period when I was having lots of depression.

However, I got onto to this stuff and found out about it. I sure did get that out of my life. It’s an additive, not a supplement one goes out and buys to help their health. – J


Breast Cancer Vaccine Looks Very Good, Headed for Human Trials!

Have you seen the news that there’s a vaccine that could prevent breast cancer? []. It works very well in mice, and of course it will take time for them to do trials in women. Like vaccines that recognize and fight a virus, it somehow recognizes and targets a protein that is found in most breast cancers.

My grandmother, mother, and aunt have had breast cancer, so I definitely would want to get in on the trials if I can. According to the research abstract, “a-lactalbumin vaccination may provide safe and effective protection against the development of breast cancer for women in their post–child-bearing, premenopausal years, when lactation is readily avoidable and risk for developing breast cancer is high.” – T


CFIDS Association Invitation to Join Webinars, Watch Webinar Videos

The CFIDS Association is giving webinars on topics related to ME/CFS/FM. For a schedule of upcoming webinars you can go to

If you would like to watch videos of webinars that have taken place already you can go to – L


ME/CFS Patients in Norway Rate Benefits of Different Therapies

The MCS America ( Newsletter published a summary of a Norwegian study that asked people with CFS to rate the helpfulness of different therapies []. For example, 96% said a regime they call ‘shielding’ has been highly helpful. On the other hand, 79% ‘experience deterioration’ with graded exercise training. – G


Help for Those with Thyroid Disease

I know it’s been mentioned before, but Mary Shomon’s book Living Well with Hypothyroidism can help you so much. Your library should have it. Answers so many questions and gives helpful advice. – P


Note: This information has not been evaluated by the FDA. It is general and anecdotal, and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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2 thoughts on “From Our Readers – Comments & Suggestions 06-02-10”

  1. Sandy10m says:

    Yes, I have something similar, but with lots of things including perfume, room deodorizers, cigarette smoke, chlorine, and most chemical smells. It takes a minute to get the sore throat, but the bronchitis cough is immediate. It’s called Multiple Chemical Sensitivity, and lots of us have it. It’s a near allergic reaction, due to your immune system being hypersensitive, along with a lot of other things. My doctor (who is very progressive and open-minded) wants me to try LPV therapy (USA) by Dr. Shrader. This is based upon the EPD therapy of Dr. McEwen in England. The therapy resets your immune system back to a normal level of sensitivity. I will try it in a few weeks, and I hope to report back on my success.

  2. bettyg says:

    When reading the above about IC, interstitial cytosis, it made me think of this.

    I don’t know if it’s been posted or not, but there is a wonderful board with 700 illnesses/symptoms online. Each forum is moderated by an individual who has the illness.

    I’m on their lyme disease board. Awhile back they made up a fibro/lyme board since our symptoms overlap. ENJOY 🙂

    bettyg, iowa lyme activist/group leader 🙂

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