Letters from our Readers – Ideas and Discoveries 11-1-06

Seeking others to share shelter and expenses
I was wondering [if there is a system we can use] to help us find each other to provide help with shelter and share expenses? I have a lovely home… and thought if I could find another disabled person with CFS or FM or both who was in the same situation, we could help one another and relate as well. – Susan

Note: This is a great idea. Individuals interested in sharing resources can start by networking through area support groups. You can search our support group directory at http://www.immunesupport.com/supportgroups/ Also, because groups are constantly forming or changing their names and contact information, we urge you all to see if your own group is included correctly in the directory.


Why the change to such strange subject matter?
Since you do invite our input, mine is that I am not finding much of interest or help lately in the newsletters. What has happened to the good subject matter we used to have? Seriously concerned, because I was getting good help which I need. Why the change to such strange stuff? – Toni

Note: We're constantly experimenting to find content that will be useful and helpful for you, and which might help educate your healthcare providers about CFS. So we need to know which information you feel is valuable – and prize your specific feedback. Also, in the weeks to come we will be running surveys to help us focus on your top priorities.


A chat with doctors would be so useful
Your Website is very helpful to me. I live in Portugal and the sites are never updated. Yours is always concerned with giving us the most recent news about Fibromyalgia and CFS. I just wish you would have a chat with doctors. – Olga

Rich Carson responded: A chat with the most noted CFS and FM doctors in the world? Great idea, and consider it done! Look for that to start happening sometime in the next two or three months. That is definitely a win-win scenario, and I appreciate your good idea.


Recommending Dr. Paul Cheney
Our son [who has CFS] began seeing Dr. Paul Cheney at the Cheney Clinic in Asheville, North Carolina, four years ago. He was literally the last patient Dr. Cheney saw before he had his heart transplant. As you probably know, Dr. Cheney has returned from that surgery better than ever, and has resumed seeing patients.

Having been to at least 20 physicians including several in Jacksonville at the Mayo Clinic, all with their own remedies (including "it's all in your head"), and none who provided any relief, Dr. Cheney has conducted sophisticated testing and developed a protocol for our son that has turned his life around. He is now able to continue with his studies (PhD in clinical psychology), and while not cured leads a relatively normal life.

Listening to Dr. Cheney is like going to a graduate level chemistry class. The man is brilliant and always synthesizing information that leads to new medical options. – Juliet


After 20 years, found it was Lyme
It has taken me 20 years being misdiagnosed with CFIDS and Fibromyalgia to get a correct diagnosis – of Lyme disease and co-infections. It is well known that insurance companies do not want to pay for costly Lyme disease treatment. Many people diagnosed with CFIDS and FM have never even been tested for Lyme, or have had the "standard" tests for it, which are the worst – maybe 30 percent of people [who have Lyme] test positive using these basic tests. I have never met anyone who recovered from CFIDS or FM, but I have met people who have recovered from Lyme disease after years of proper treatment. I will make one exception [in urging a look in this direction]: people who got Fibromyalgia after accidents and injuries. – Lynne

Note: One useful resource on this subject is “Fibromyalgia, Chronic Fatigue Syndrome, and Lyme Disease,” by Bonnie Gorman, RN, at http://www.canlyme.com/fibrocfslyme.html This is a summary of Dr. Sam Donta’s presentation to the Massachusetts CFIDS/FM Association in November 2002, titled “The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues.”


More success stories, please
Can you please give us more stories about people who have gotten back up on their feet? The recent story you shared from the nurse, Nikki, was inspiring, and of course, Rich Carson's story is inspiring. I need to hear more. I've been trying this past year to get up on my feet, but fear sets in because I'm afraid I'll relapse. I have small relapses all the time, – but I'm in an upward trend, and need the inspiration to keep me going.


In praise of probiotics
[The article in ProHealth’s new Fall 2006 health and information catalog* – “It’s Not in Your Head, It’s in Your Blood” – discusses Dr. Kenny De Meirleir’s discovery of an enzyme in the blood of CFS patients, and indicates it may be associated with] leaky gut syndrome, which I believe is the lack of good bacteria or flora (probiotics). Eating organic yogurt and other supplements containing probiotics (good bacteria) has improved my health a great deal, and I am sure I had leaky gut syndrome or high candida [yeast], which has roots that cause leaky gut – Jerry

Note: If you have not received a copy of the new catalog, simply request one at https://www.immunesupport.com/shop/catalog/index.cfm


Food allergy test offered help after 11 years & 50 doctors
I have been struggling with what was diagnosed as CFS for 11 years… After all the doctors, specialists, medications, and [failures], I have come to the question "Is this all from allergies? " It all began in my digestive tract.

Not one doctor of perhaps 50 [including a leading CFS specialist, in a three-hour consultation] ever suggested allergies or sent me to an allergist. A chiropractor/nutritionist took a blood sample and suggested we order an ELISA/ACT [food allergy] test. He changed my life when I took all the foods and chemicals out of my diet that came back on that test.

If I eat what I now know to be an allergen to me or subject myself to a chemical that I know I am allergic to, all of the CFS symptoms come flooding back. I am talking about fatigue, muscle and joint pain (inflammation), headaches & migraines, trouble walking, trouble staying awake, brain fog, memory loss & lapses. All of it. If I adhere to a whole foods diet and avoid foods I have an allergy to, I can count on a functional day. I have not come to the point that I feel normal yet, but I have advanced from being housebound to cooking, cleaning some, socializing a bit and living a more normal existence. I hope to progress more. – Susan


Found the answer was working on immune system
I will be 72 in February… I suffered from Chronic Fatigue Syndrome, otherwise called Epstein Bar Virus. I have been free of CFS since 1992 and achieved many health improvements by learning to maintain a strong immune system. In our society we have an over dependency on pharmacy medication. It is like an addiction. A sure cure to good health, without making any adjustments in our habits and lifestyle. When we finally realize we cannot drug ourselves into good health, and are willing to make changes in our lives, then and only then will we begin to see permanent changes take place in our health. – Allen

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