From Our Readers – Comments & Suggestions 07-01-09

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The FDA’s Nasal Zicam Recall and Warning

Re: “FDA Advisory – Stop using Zicam intranasal products & throw them away. Risk to sense of smell cited.”

Q: I had weight loss surgery and have been talking zinc tablets for about 20 months to help with hair loss. I now have lost my sense of smell for about 3 months. I quit taking the zinc just a couple of days ago. Will my sense of smell come back? – S

A: As far as we can see, the FDA advisory only applies to zinc-containing products that are sprayed or swabbed directly up inside the nose. The Zicam lozenges taken by mouth are not included. Though we haven’t turned up any info so far that would point to dietary zinc affecting the sense of smell, it’s certainly not impossible. As you know, zinc is vital for a host of metabolic processes, but as with many things, excessive amounts are known to cause problems. For example, some people who have been heavy users of zinc-containing denture cream have had a range of neurological problems.

In any case, the loss of your sense of smell is important, and that, plus your decision to stop taking zinc, deserves a discussion with your doctor. You could be tested for excessive zinc levels, but there are many other possible causes for this problem, including many types of drugs.

Here is an excellent article on Management of Smell and Taste Problems. It covers various possible causes, a long list of drugs known to cause problems, and even the addresses of major U.S. smell & taste centers.

We hope this will be helpful and wish you the best in solving this problem. If you like, please share what you learn.


Baked Kale Chips – Good for My Eyes, and I Can Eat a Bunch

I have macular degeneration, and my retinologist told me that kale is the food with the highest lutein content, so I should try to eat it as often as possible. I got tired of sauted kale, but found this recipe for baked kale chips that I really enjoy.

I tear the tough center stalk off washed & dried leaves, toss them with olive oil, lay on a parchment-covered cookie sheet, sprinkle with sea salt & parmesan or garlic powder, bake at 325 degrees for 7-10 minutes or until edges crispy not black, and eat in front of TV. I’ve also tried them with with vinegar for a change.

There are more ideas and comments at – D


Sugar May Be Our Worst Health Risk

I just watched a new program on PBS with Dr. Michael Roizen.* It was all about staying away from things which prematurely age us and doing what we can to stay healthy and younger than our chronological age.

The doc had a video graphic which shows what happens inside our blood vessels when we eat sugar. The blood vessel wall linings start to crack. The body repairs these cracks with plaque. Eventually, this can narrow the vessels and they will start to clog up with platelets. The whole thing can break loose and cause blindness, strokes, and heart attacks. We all know that sugar isn't good for us, but seeing that video was really an eye opener.

For years, the medical establishment did us a horrible disservice by telling us it was the fat in our diets which was causing heart attacks and strokes. There are bad fats, like anything hydrogenated, which do cause health risks, but sugar is even worse.

In this country, we are addicted to sugar. We consume it constantly and develop insulin resistance. That means that the insulin we produce is no longer effective in handling the sugar in our blood. This can lead to Type II Diabetes. The weight gain from eating a high-carb diet can lead to all kinds of other problems…

But the good news is that we can do something about it. We can get carbs from our fruits and veggies. Products which list anything ending in "ose" contains sugar. Fructose corn syrup is often one of the main ingredients in processed products. Some fruits and veggies are high on the glycemic index and should be eaten in small amounts, only infrequently… I think we are only becoming aware of the dangers of sugar. Like with smoking, the damage isn't immediate nor noticeable. It all goes on inside our bodies until, one day, we suffer a serious health consequence.

My ex had six bypasses done a couple of years ago. He is addicted to sweet food and candy. Before they released him from the hospital, a young "nutritionist" came in to "educate" him about his diet. It was known he is insulin resistant. All she talked about was watching his fat intake. I asked about carbs and she said carbs didn't matter. Did she even look at his chart?

Watching that program was my moment of truth. I am giving up all forms of sugar and limiting my carb intake to fruits and veggies… Just wanted to share this because I know so many of us crave carbs. – M

* Note: We couldn’t locate this video online, but here’s another one by Dr. Roizen on dietary fiber that's both entertaining & informative – "You on a Diet."


Alzheimer’s Live-Alone Criteria – How Do We Know It’s Time to Move Mom?

The best and only information I’ve found on this is the “Live Alone Assessment” developed at the University of Iowa. It was developed because the average social worker has no uniform guidelines to make such a determination.

One of the big problems is there is no way to know how a person will react in an emergency situation. – N


What Does Autism Spectrum Mean?

Well now. That is one very good question! It confuses many people. The term "spectrum disorder" in psychiatry and neurology "is used to indicate the fact that although there is a common denominator, a given type of individual may present with a given pattern of symptoms, reminiscent of the spectrum of distinct colors after refraction of light by a prism." Huh? Well it means everybody has some similar traits and challenges but not everyone experiences the disorder in the same way.

Same holds true for the autism spectrum. There are severe cases (learning and language as well as social problems) and there are very mild, hardly noticeable cases. (Social impairment, concentration issues or repetitive behaviors only.) By the way, did you know that Asperger’s is considered on the autistic spectrum but technically not autism? I know. Confusing. It makes my brain hurt.

But for all practical purposes, yes, the autism spectrum refers to disorders that are autistic in nature, so therefore the terms are often used interchangeably. Also, epilepsy and autism often occur together as do other brain dysfunctions and autism. – C


Please Help Me with My Autism Research Project

I'm a high school student doing a research project for a prestigious competition and I would REALLY appreciate your help by completing my survey. My eight-year-old cousin has autism, and autism is therefore very near and dear to me. I wanted my research project to incorporate autism because I am hoping my results can eventually be beneficial to families. I would REALLY appreciate if you could go to the following link – – and complete the [anonymous] survey about marital satisfaction. It will only take 5-10 minutes. Thank you so much for your time! – R


Relocating to Warm Dry Climate, Shared Living, Helped Me

I moved from the East Coast (Connecticut/New York) where the weather is cold and the humidity high to Las Vegas, NV. The weather is warm and humidity is very low. It has helped me quite a bit. As far as cooperative living, I would recommend a roommate finder like I've used it several times and it has allowed me to move around a bit easier. Hope that helps someone. – D


Does Research Indicate Vitamin D Helps Prevent Anything Besides Rickets?

Re: “Vitamin D may lessen age-related cognitive decline, and oily fish really is brain food, eight-country study concludes.”

Q: This doesn't say or prove that Vitamin D is beneficial for preventing cognitive decline. Are there any studies showing that by taking Vitamin D that there is an improvement in brain function? With the exception of bone problems, I have not seen any studies that show Vitamin D treats those diseases. In the diseases where there is a D deficiency, part of the process may be decreasing that vitamin. – S

A: A good question. Most of the scores of vitamin D studies published recently correlate different levels of serum vitamin D, sun exposure, and/or dietary intake of vitamin D (e.g., amount of oily fish/omega-3 fatty acid consumption) with likelihood of having or developing various illnesses. But importantly, encouraged by these findings, the focus is now turning to placebo-controlled research to measure any potential preventive impact of supplemental vitamin D & omega-3 in a population. The National Institutes of Health and Harvard, for example, just announced they will recruit 20,000 healthy participants across the 50 U.S. states for a $20 million, five-year trial – the Vitamin D and Omega-3 Trial (VITAL). Click here to read more.


I’m Building a Four-Country Good Doctors List – Need Your Recommendations

My name is Garrett from I recently built a searchable database of CFS doctors. It contains over 500 doctors in 4 countries (US, UK, Canada, and Australia), including quite a few I found in the ME/CFS/FM Message Board.

Right now the results are mostly CFS-friendly doctors, but I am planning on expanding to FMS and MCS doctors also. I need your help to make the database as complete as possible. If you have a doctor that you would like to recommend to the CFS/FMS or MCS community, go to: and leave the doctor’s name, address, phone number, and any other info you have, such as email address or website, in the comments section. I will make sure to add it to the database, a.s.a.p. – G


Physician Rating Sites – Negative Comments Not Always Reliable

Re: The letter “Physician-Rating Site Could Be Helpful if You’re Looking for New Doctor.”

Someone had mentioned about going to and reading good/bad comments on the doctors you are thinking of going to. I used to highly recommend this site, but lately I've been made aware that many BAD comments are vendettas from 1 to 3 people who go on and on about doctors. It’s one-sided only. They have a grudge against the doctor, or a personality clash, so they submit many comments and have their family/friends do the same thing. Most people do NOT know about this site, so the good details and comments are not placed on there for that reason alone. I just want to caution you… these comments are not 100% reliable. Read them with a grain of salt please. – B (a Lyme activist)


How Can I Find a Clinical Trial?

Q: I would like to see if I can get into a clinical trial. How could I do that? – W

A: If your physician or local medical group is active in research, you can start by asking if there might be an upcoming trial you might qualify for. It never hurts to ask and express interest, and some trials are by invitation. But for most patients, the best way to see what’s out there is to go to, and search on (your condition) AND (your town or state). It’s a question of finding a trial that might interest you that’s within traveling distance. Trial listings offer contact info & an e-mail link to the study coordinator. New trials are listed all the time, and you can sign up for notifications.

Also, search the websites of clinicians active in researching your condition. For ME/CFS/FM, for example, you could start with Drs. Lucinda Bateman (Utah), Nancy Klimas (Florida), Charles Lapp (North Carolina), Daniel Clauw (Michigan), Leonard Jason (Chicago), and so on.

And finally, you can post a question in the relevant Community Message Board. Other posters may have just the info you need.


Want to Find Issues of Newsletters I Missed

Q: For some reason I haven’t received a Wellness newsletter for a few months. How can I get the ones I missed and get signed up again? – D

A: Just go to and click on “Sign Up.” You might want to sign up for all three – ME/CFS, FM, and Wellness – to make sure you don’t miss anything. To find archived issues of each newsletter by date, go down to “Archives.”

Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any condition, illness 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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