From Our Readers – Comments & Suggestions 04-29-09

Did You Know Soy Is One of the Top 10 Food Allergens?

Re: The letter about the girl who found out soy was causing her chronic heartburn.

I am also allergic to soy, and you're right, nowadays they're putting it in everything, with bright pink starbursts on the package "Now with soy for women's health!" Not for THIS woman's health. I pointed out to the manager of the health food store that they have a section for gluten free foods, and a section for dairy free, etc.; they need to have a section for soy free.

He was stunned to learn that soy is one of the Top 10 Food Allergens.

I can't even rely on "I've eaten this before with no problem," because so many manufacturers are reformulating to put soy in – I have to read labels every single time I shop. As much as I would like to become a vegetarian, I can't, because I can't eat soy to get protein, and I need a lot of protein to remain functional. – CF


2009 Stimulus Payment for SS & SSI Beneficiaries – Will Come By Mail

Following is a legitimate SSA message I received through the mail about the Social Security stimulus package – TC

* * * *


Good news! The economic recovery bill that President Obama signed into law in February 2009 provides for a one–time payment of $250 to Social Security and Supplemental Security Income (SSI) beneficiaries.


Here is some helpful information about the one-time payment that you will receive:

Your one-time payment will be $250. Each person will get only one payment. If you receive both Social Security and SSI benefits, you will receive only one payment of $250.

If we directly deposit your Social Security or SSI payment to your financial institution, the $250 one-time payment will be deposited into your account. If we mail your social Security or SSI payment to you, we will mail the $250 one-time payment to you.

We will not include the payment in your monthly Social Security or SSI benefit payment. You will receive the $250 payment separately.

If you are married and both you and your spouse receive Social Security or SSI, you will each receive a $250 payment. However, children under the age of 18 (age 19 if still in high school) who receive Social Security benefits are not eligible for the $250 payment. Since every family situation is different and the rules can be complicated, please visit to learn more and review our frequently asked questions on the economic recovery payments.

The economic recovery legislation also provides for a one-time payment to recipients of Department of Veterans Affairs (VA) and Railroad Retirement Board (RRB) benefits. However, if you receive Social Security or SSI benefits and you also receive VA and RRB benefits, you will only receive one $250 payment. The Social Security Administration will send you this payment.


The law requires the Department of Treasury to offset these one-time payments to collect delinquent child support and debts owed to state and federal agencies.

Again, you do not need to do anything to receive this payment. To assist us in issuing these payments as quickly as possible, please do not contact us about your payment unless you do not receive it by June 4, 2009.


For more information, please visit

Michael J. Astrue
U.S. Social Security Commissioner


Good Book for Those of Us with Thyroid Problems

Stop The Thyroid Madness is a wonderful, empowering book for those of us with thyroid problems. It's educational both on the science of thyroid disease, as well as about how to deal with reluctant health care practitioners.

I put in a request at my local public library asking them to purchase Stop the Thyroid Madness for their collection. Not all such requests are honored … it depends on budget, current collection in that subject area, & the judgment of the acquisitions librarian. But we did luck out & got a copy. Now many people in my community (and surrounding area; libraries share) have access to this wonderful advice.

If anyone out there would like to do this for a book at YOUR library, start by asking at the reference/information desk. You do need to have basic info on the book – title, author, publisher. – SZ


Opioids and Increased Pain Sensitivity

Re: The study concluding pain patients on opioids become more pain-sensitive

Well Duh! – Yes, I think this is a certainty. In fact, I thought it was well known, for decades, since the Civil War era. You see, morphine depletes the normal pain-dampening chemistry of the brain and CNS. The exact brain chemicals involved, I am not sure of, probably something to do with serotonin? Anyway, because morphine PROVIDES them, the brain stops producing them.

I think this is the basis of withdrawal pains too. I am a long-term [prescribed] opiate user, originally prescribed for chronic pain. I am not so sure that I would recommend this therapy, but I was willing to try anything 18 years ago, and I made it this far so I guess it helped. I was so naive at the time… under prohibition conditions it can be sheer hell being addicted to opiates. I do have heightened pain sensitivity, but I had that all those years ago too… Maybe people who are on morphine are going to be that way in the first place… did this study take that into account? – SP

It May Not be the Opioids – Given any long term severe pain will itself over sensitize the nervous system and that it's not disclosed if the non opioid group were chronic pain sufferers, it may have nothing to do with opioids. If you have severe pain for long enough your nervous system starts to transmit non-painful stimuli as being painful. Anything that puts your body under significant stress can do that too (say if you're taking methadone for addiction). Also this seems to give yet another reason for doctors to avoid prescribing morphine, etc. in cases of severe chronic, non-cancer pain.

When it comes down to it, who cares if your tolerance to other pain decreases a little if the drug has damped down the problematic pain to a level that gives you some quality of life. I've been on the same level of slow release morphine for around 7 years now due to chronic spinal pain after a fracture that caused disc intrusion to the spinal cord. I've found fewer side effects with this drug then I have with any of the many others I tried first. I've not noticed my pain tolerance decrease, although I don't cope as well emotionally as I used to. I believe that if the quality of life is severely impaired due to severe pain everybody should at least have the option of opiates if nothing else has worked. – MP

I am on Long Term Opioid Pain Management – …I think we need more positive information about the benefits of opioid pain management out there as it certainly has been the "only" thing that has helped me and I have had very negative comments made to me by Dr.'s and other medical professionals about being on opioids and have felt like they look at me like I'm an abuser without even knowing my medical history or the fact that I treated my disabilities and pain with every other conceivable method known to man before I finally gave in to Opioid Pain Management as my only hope of a partially functional life.

Do I like it? No! Do I wish I didn't have to take them? Yes! Does it make me a bad person or a weak person? Not at all! So let's hear something positive and up-building about Opioid Therapy, the oldest and safest drugs of all time, instead of them trying to find reasons why we shouldn't take them! The medical profession never had a problem using them 30 years ago but now it seems because people have started abusing them because of easier availability "We" the Chronic Pain patients of the world, must now suffer under all kinds of stereotypes and ill treatment for using what was always considered a good and effective remedy in the past and no one raised a fuss!

I'll now step down off my soapbox, as I could go on and on over this issue! For me to agree with this article’s author I'd have to see a lot more information included in his study! – MC


Celiac Disease Caused My Exhaustion and Muscle Pain

I feel I actually have Celiac disease and I have pretty much proven it. I am gluten free… and I feel better then I have in 10 years.

I am not taking any medications whatsoever and I'm no longer in pain. I was taking MS Contin for 5 years and I have been off it for 2 weeks now with no pain. I have also found in my research that there are a lot of people who have been diagnosed with FMS who later found out they have Celiac disease, a LOT of people. I can't believe what I have found in correlation between the two.

The main thing that made me think of gluten intolerance or Celiac in my symptoms was first when I became allergic to other foods I had eaten all my life. This definitely raised an alarm for me; why would I all of a sudden at 25 years old become allergic to rice? So I started doing research online and found out about Celiac. I had never heard of it before that. I have had stomach issues since I was 10 and nobody seemed to care, they told me it was normal. Even then I knew it wasn't normal but even my mom couldn't get anyone to listen.

After reading about Celiac and food allergies, I started paying attention to what I was eating and when I felt at my worst, I realized bread was a huge issue and then pre-prepared frozen foods, like pierogies (one of my favorites!). I would pass out after eating anything like that (complete exhaustion) and oh the stomach issues… they would just get worse. Sometimes I would be out for days, not able to do anything or stay awake for more than a few hours. And the muscle pain would become so intense, the MS Contin I was on wouldn't even touch it. I would pop 4 to 6 ibuprofen on top of the MS Contin and still be in pain.

Once I stopped eating gluten, preservatives and most dairy, I felt like a new person. Until a few years ago, I had no idea how much food can mess up your body if you are eating something your body doesn't like. And my doctors never even looked at this as a possibility – nor did they care once I found it.

There are breads you can eat that are gluten free, lots of them. They take some getting used to as they are not your typical white or wheat bread, but once you get used to them, their not so bad. If you have any Co-ops or health food stores in your area, they can help you get off gluten. It's really not as bad as it seems at first. Of course it's a little complicated for me because I'm also allergic to rice so I have to be more careful then most, but if you don't have that allergy, it's really just a matter of changing the way you look at food. There are tons of breads, pastas, bagels, everything gluten free. You don't have to change the food you eat, just the brands of food really.

…I'm walking my mom through it right now too, as Celiac is hereditary and chances are if I have it, she does too. She was also diagnosed with Fibro and has all the same symptoms I did. – S


“Best News Video on Lyme” is Really Good

I had a positive lab test for Lyme last fall, but have not done much to specifically treat it or address it. I have little inclination to do long-term antibiotic therapy, but I haven't ruled it out. What has created an impasse for me is that I'm haltingly trying to better understand Lyme and possible treatments without having a lot of confidence in my cognitive abilities to do so.

Tonight I came across a news segment on Lyme that may be a catalyst for me to get started on developing a game plan for myself. This video sorts out some of the information I've come across in bits and pieces and puts it in a more cohesive, comprehensible framework that I found quite helpful. I came across this video on the following website:

In the upper right hand side, there will be a link you can click on entitled: "Best News Video on Lyme I Have Ever Seen!" Once you click on it, it will open up in Windows Media Player. It's about 20 minutes long.

I've thought a lot about my Lyme diagnosis since receiving it last fall. I currently believe that I have both CFIDS and Lyme, with Lyme probably being a significant contributing factor to my host of CFIDS symptoms. But who's to say what the reality is? I don't know, and I don't really care. I just want to be well, or at least get better. Perhaps it will happen once I start treating the Lyme.

I'm posting this here in case others are finding themselves in a similar situation as mine; wanting to understand Lyme better, but not knowing where to start. – Wayne


Chemical Sensitivities Making Sense

Re: “Chemical Sensitivities – The Body’s Strategy for Minimizing Risk?” from Dr. Mark Donohoe’s free online book on environmental illness, Killing Us Softly.

The article was highly informative, also entertaining. I intend to download his book and read it. Who knew the brain was part of the endocrine system in our body! Having MCS along with ME/CFS is challenging. Chemicals can definitely trigger ME flares. – S


Gulf War Syndrome as Environmental Illness

Re: “Brain damage in Gulf War syndrome pinpointed – Texas researchers verify link to toxic exposure”

Asking for Physician Education in this Area – I used [this research by Dr. Robert Haley] along with the Gulf War study and Baraniuk's research on Spinal fluid in Gulf War Syndrome, CFS and fibro to support a resolution for the Massachusetts Medical Society to consider this May on the 8th at their next meeting.

I asked for recognition of these as Environmental Illnesses, and that they are physiologic and to create a CME course for physician education in this area.

Studies like this that are government funded help to force the medical community to keep up with the times, I think. – Lisa Nagy, MD, – Your thoughts and comments.

Toxins vs. Concussion – There were earlier articles about Iraq War vets and their problems from the percussive shocks of bomb blasts (which used to kill soldiers but body armor is now saving their lives). It seems that there are shock waves traveling up the blood vessels and into the brain that do the damage. There is also regular concussion damage to some of them. Some of the symptoms are different of course, but one that is common to all three groups is body pain. How interesting!

What’s great about this study is that it shows a way to determine if the damage is from toxins or other things, by using the physostigmine, a substance which briefly stimulates cholinergic receptors. The toxin-affected victims will have an abnormal response to that physostigmine.

Thanks to this kind of work, there might be ways to provide a more definite diagnosis for people with chronic pain conditions. It seems now that we have the toxins, the concussions, the percussive/shockwave, and of course the viral and bacterial causes of chronic pain, and they ALL make sense and are ALL becoming more and more legitimatized (is that a word?). – SP


‘Migraine Gene’ & B Vitamins

Re: “Folate & other B vitamins support ‘drastic improvements’ in those with ‘migraine gene’”

Bravo! As a migraine sufferer for the last 27 years, it was just a year ago that I made some huge changes in what I chose to put in my body. At 56 years of life I decided it was time to go off my HRT and start a program of food based vitamin B supplements. I also started Fosamax for minor bone loss as well. I had done my own research and my doctor concurred it was worth trying to see if it helped my weekly migraines that often made me miss work and greatly affected my quality of life.

This April, I can joyously report that I have not had a migraine in one year! Research! Be your own health advocate and always communicate with your doctor. Work together and you will find answers and relief. – TB


Tips If You Have a Problem with Dry Eyes

I've found these preventive tips, from my ophthalmologist, to be very helpful… I suffered for many years in circumstances where I could have had much less eye pain had I simply used preventive measures.

Preventative Measures:

1. If you are in an environment with forced-air heat or air-conditioning, position your face at a distance from the air stream. Especially important for work and sleep.

2. Get a pair of wrap-around eye safety goggles, the kind that are enclosed around the sides as well as at the top. When you are cleaning, vacuuming, gardening, outside in rain/wind/hail/snow/pollen/smoke, wear the glasses to protect your eyes. If you wear eyeglasses, make sure your safety goggles are large enough to fit over your glasses [for] when you are driving & open the window.

3. Use the safety goggles when cooking, frying, baking. Also when engaging in any sort of craft activity or exercise where moving air is created, or where pressurized products are in use.

4. Get a pair of shaded wrap-around glasses, the sort that are used after eye surgery, for sunny weather in lieu of regular shades.

5. For those who are menopausal, if you are able to tolerate bioidentical hormones, these can be helpful for moisture – including eye moisture.

6. A daily dose of a gram or so of high quality EPA fish oil helps dry eye. Use a brand that has been lab-tested.

I've been amazed at what collects on the surface of the safety goggles as I go about everyday household & cooking duties. – S
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 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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5 thoughts on “From Our Readers – Comments & Suggestions 04-29-09”

  1. bettyg says:

    Last year, Andy A. Wilson released his 4 yrs. in the making dvd, UNDER OUR SKIN, 104 minutes documentary.

    You can view a brief trailer of the film here:

    You can also view their screening dates and the BIG SCREEN dates in NYC and Calif. beginning in June 09.

    I’ve had chronic lyme for 39 years. MISDIAGNOSED for 34.5 years by 40 – 50 drs. with just a few of these being mentioned:

    mono/epstein barr virus,
    TMJ, food allergies to gluten/wheat and casein/daiy food;

    EXTREME sensitivities to:

    lights, glare, & reflection; noise & sounds; and chemicals: perfume, after shave, hair spray, cigarettes & smoke on their clothing; diesel fumes, some food smells, cleaning & office supplies.

    I had a western blot igm and igg blood test drawn and sent to Igenex Diagnostic Labs, Palo Alot, Calif. Both tests were positive; my treating primary dr. of 27 years clinically diagnosed me after that.

    BettyG, Iowa activist

  2. jmkinsey says:

    My ophtalmologist has advised me to up my intake of flax oil to combat dry eyes & she also recovmmends preservative free Systane eye drops.

    This seems to help

  3. jmkinsey says:

    My ophtalmologist has advised me to up my intake of flax oil to combat dry eyes & she also recovmmends preservative free Systane eye drops.

    This seems to help

  4. jmkinsey says:

    My ophtalmologist has advised me to up my intake of flax oil to combat dry eyes & she also recovmmends preservative free Systane eye drops.

    This seems to help

  5. jmkinsey says:

    My ophtalmologist has advised me to up my intake of flax oil to combat dry eyes & she also recovmmends preservative free Systane eye drops.

    This seems to help

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