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From Our Readers – Comments & Suggestions 08-31-11

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Could ‘DRACOS’ Be the Antiviral Silver Bullet?

Re: “MIT’s Universal Antiviral Could Transform 21st Century Medicine”

Wow! I hardly dare hope. : )  – T

I can probably speak for the majority of people diagnosed with ‘Fibromyalgia’. Test the drug on this group first. I truly believe it is caused by an unknown virus and the symptoms not only change continuously but grow more intense and debilitating. We desperately need a cure. The drugs that are available to use now only help mask some of the symptoms. – M

Sign me Up! …Sadly, the trials will take years to complete, and in the meantime many more lives might be lost to suicide. I just hope fibromyalgia sufferers get an early chance to volunteer for the human trials when they eventually start. – M

I have some good feelings about this. Thank you all for the research… including our little creatures [the mice]. God Speed! – H

This DRACOS is fantastic news if it will kill all or most viruses. I am convinced that Chronic Fatigue Syndrome & Fibromyalgia are both viral infections that live throughout our bodies… I was taking 1500 mg of amoxicillin a day for a sinus infection. After 3 days I thought and felt like a brand new woman for about 1 week! During that time, I did not experience headaches, migraines, exhaustion, fatigue, cognitive dysfunction, etc. Of course, I could not continue on that particular dose because it would be damaging to my system. A few days after I completed my prescription all those horrible, monstrous symptoms returned… We need an effective and safe antivral medicine. There is an answer and a treatment out there! – N


Cinnamon Helps Diabetes 2 & Prediabetes Sugar Control as Much as Drug

Re: “Cinnamon Intake Lowers Fasting Blood Glucose”

In reading the full-text of this article I found the names of a couple cinnamon extract products used in the studies. I also searched online and found a number of water soluble cinnamon powder extract supplements as well as liquid ones. These seem to be relatively low-cost and easy to find in health food stores, etc. – J


Whittemore Peterson Invites Suggestions for Newsletter Title

WPI needs your help to give our Newsletter a name. Please email your suggestion to angelinawg@wpinstitute.org by Friday September 2, 2011. Thank You.

Whittemore Peterson Institute


Pain But No Budget for ‘Alternative Therapies’? Try These

I have a very old heating pad, but it still works. Moist heat works best for me so I slap on a warm washcloth over the painful area and place the heating pad right on top of it. Ice paks do wonders also, and making ice is free. Also, go to your library (if you can or send a friend or family member*) & take out some books or DVDs on yoga. I do a “gentle yoga for arthritis” & it works wonders.

You can also take two tennis balls in a knee sock and knot it up at the end. Roll it up and down areas with pain or lie on the floor with it under your back and roll. Hope some of these help! – G

(By the way: Some libraries have a home bound program where you can call them and ask for a certain book, video or CD and their volunteers deliver them to your home. – B)


If You’re Overwhelmed Starting a Gluten-Free Diet

I’ve been gluten free (g-f) for a long time. You can find g-f substitutes for every food – pasta, breads, waffles, cookies, cakes, crackers, tortillas – and on and on. You can even get gluten-free oats for oatmeal if you want.

Study the foods in stores – hit a health food store. Whole Foods has a g-f section that has many g-f frozen baked goods. I used to like the cranberry-orange scones. Safeway now carries gluten-free items, in frozen section also. Whole Foods has g-f breakfast bars. You can ask in stores you go to if they carry gluten-free things.

I sometimes make pancakes from walnut flour or garbanzo flour. There is a lot to experiment with! And you can find plenty of ideas and recipes online. There are plenty of g-f flours you can buy in health-food stores. When I make gravy I thicken it with arrowroot or kudzu (from health food store). I make such a good turkey stuffing using rice bread, celery, onion, sage, thyme, butter, chicken stock.

Yes – read labels very carefully. You are looking for wheat, basically, on labels. If it says wheat, don’t get it. But when you search around you can find substitutes. I found a gluten-free mushroom soup at Whole Foods (expensive – I don’t get it much) that can serve as a sauce or gravy. The products are out there! Just start your search and you will eventually find everything you need. Trader Joe’s has great brown rice tortillas. And I guess you can have corn tortillas.

It’s an exciting adventure, right? Have fun – S

Note: A site we like is www.celiac.com. You’ll find recipes, both ‘safe’ and ‘unsafe’ food lists, a list of ‘other’ names for wheat, tips on gluten-free cooking, food reviews, a free e-newsletter, and much more (really too much to list).


Maryland’s Proposal May Be Good Solution to Medical Marijuana Problem

An editorial in The Baltimore Sun [“Marijuana as Medicine,” Aug 18] was enthusiastic about the idea a special state panel is proposing – that medical schools and hospitals (like Johns Hopkins University and the University of Maryland) administer the state’s medical marijuana program. The editor’s conclusion: “A proposal to allow medical schools and hospitals to administer Maryland’s medical marijuana program holds out the prospect of a safe, practical way to help patients cope with severe pain or illness.”  The article got a five-star reader rating. – J


If You Had Polio as a Child

Re: “Polio virus does new harm in at least 80% of aging survivors” 

I had polio as a youngster and seemed to recover. Than a few years ago I started having muscle weakness, pain and fatigue. I happened to read an article about post polio and subsequently was diagnosed when I shared this with my doctor. It’s true, this is not something most doctors would suspect unless you have told them about your polio history. – A


New Migraine Med Delivery System

I saw the neurologist and he gave me two samples of a new migraine medication delivery system and it is supposed to get the med into your system in about 10 minutes. It is called Sumavel DosePro and it delivers sumatriptan (generic Imitrex) through the skin by a burst of air, thus eliminating the use of a needle (for those who use injectors). It is NOT for any other type of migraine med (but rest assured that other meds will probably come up with this type of system eventually if this works out well).

Each Sumavel DosePro is fully filled with medication and all you do is twist and snap off the top, flip the lever down, then pinch skin as directed, place the device as directed and press. You hear a sound but it is nothing to be concerned about. The neurologist said it is pricey, about $100 per each DosePro (which is one dose). Some managed health care plans with managed meds won’t permit it. But the neurologist is giving samples to his patients for free that can’t afford it and may need it for emergency. It does not have to be refrigerated.

The Website http://www.sumaveldosepro.com/ contains lots of information including what to be aware of. Also, the website I believe contains a way of getting $15 off for each of 5 doses. – T


Altered Blood Flow in FM Brain – The Movie

Re: “Cerebral Blood Flow Alterations in Pain-Processing Regions of Patients with Fibromyalgia”.

Different imaging techniques have been showing altered activity in the pain processing centers of FM patients’ brains for years. This Perfusion MR Imaging is maybe a more sophisticated way of measuring it. But what can we do about it? – C


FDA Warns About Heart Risk of Popular Antidepressant

The popular SSRI antidepressant Celexa (generic name citalopram hydrobromide) should not be taken in doses higher than 40mg, the FDA warned August 25. “Anything more can cause abnormal heart rhythms and will have no benefit in any case,” the warning states. The drug is also prescribed off label for anxiety, panic disorder, eating disorders, hot flashes, diabetic neuropathy, OCD and more. Patients who tend to have low levels of magnesium and potassium in their blood or who have heart conditions are especially at risk, the warning states. Above all, people taking this drug should make no change in their dose on their own; consult with your doctor and do what he/she instructs. The full FDA safety announcement is here – http://www.fda.gov/Drugs/DrugSafety/ucm269086.htm



Sign the Petiton for a May 12 Awareness Day ‘Google Doodle’

This will be the 20th anniversary of International Awareness Day for ME/CFS, FM, MCS, and GWS. Sign at www.petitiononline.com/May12th/petition.html and view current signatures. You can give your name, country, and a comment. – M


Medication Caused My Mystery Bruising

Hi, I had [unexplained bruising on tmy hands]. After repeatedly mentioning this to my doctors, the psychiatrist finally casually says “Oh, that’s a side effect of some anti-depressants.” So he switched me off Cymbalta back to Zoloft. Ta da, no more bruises! – C


Do CFIDS & FM Self-Help Group Courses Help?

Bruce Campbell [director of the Self-Help website and online group courses – www.cfidsselfhelp.org/online-courses] has been helping people for years now. He developed a careful method for managing the CFIDS situation. for staying in your energy envelope. Involves keeping careful track and gives ways for dealing with challenges.

I met him once. He’s very down to earth. Evolved a system for tracking symptoms and managing them, and for helping people get the system going for themselves to do the best they can; for getting the most out of their lives while dealing with difficulties that continually crop up. A CFIDS/FM support group on the West Coast uses his book for discussion topics. He has researched every aspect of this disease and how to cope with it in very practical ways. – S


Fragranced Laundry Products Produce Toxic Dryer Emissions

More than 2,600 chemicals are documented as fragrance ingredients, and some of them are legally considered toxic or hazardous, but fragranced laundry products aren’t required to list these ingredients. This study you can read about in the MCS America newsletter [http://mcs-america.org/September2011pg234.pdf] found 25 chemicals in the gases coming out of home dryer vents from loads of laundry washed in popular scented laundry products and dried using a dryer sheet. Of the 25 chemicals, 7 were hazardous air pollutants, and 2 of them were carcinogens with no safe exposure level. – P

MCS America (www.mcs-america.org)


Note: This information has not been reviewed 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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