Dom's Newsletter
December 11, 2010
A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE PREVIOUS NEWSLETTER ARCHIVES
1. READERS WRITE
"Your website www.fms-help.com has given me renewed hope for my future."
"I look forward to your newsletter every time it comes out. Yours is the very best website. Keep up the good work. We all need help with no one to turn to. All of us have been everywhere with no success."
"Thank you for sharing your story and for your wonderful education-filled website!"
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"I have just finished reading your 100 tips for
fibro and cfs sufferers www.fms-help.com/tips.htm.
I have found them very informative. I was diagnosed with fibro and
intercystial cystitis [IC] about 4 months ago. The two apparently go
hand in hand. I also had cfs when I was about 15 years old, (I am in
my late 30's now) which the doctor said was a virus that stemmed from
having mono at the age of 11. What I loved about your information
was that it brought so many aliments I've experienced together with an
actual link, making me feel validated and not
'crazy' like it is in my
head." |
"Thank you for all your efforts with the newsletter www.fms-help.com/newsletters.htm."
"I always make it a point to go through your newletters
thoroughly; it's very admirable that you consistently compile
and post all the relevant bulletins that you do; keep up the
great work!"
2. MAYO CLINIC & FIBRO
From a reader--
"I was just reading the post www.fms-help.com/120610.htm from the patient who had a less than satisfactory experience with the Mayo Clinic here in Jacksonville. I was blessed 14 years ago to have my fibromyalgia diagnosed at the Mayo Clinic here in Jacksonville when fibro was really not on the medical "radar" as much as it is today. I don't even remember what medication that doctor prescribed but I'll never forget what he said, "the good news is you've got fibromyalgia, the bad news is you've got fibromyalgia". I have nothing but good things to say about Mayo's diagnostic capabilities, but it's a huge clinic and you are probably not going to get the personal attention you would with your primary doctor. I think it all boils down to us being our own advocates and finding a caring doctor who will listen and try different things. What that doctor said, is true, many good things and bad things have happened to me since that diagnosis but I thank God everyday that he is taking me on this journey. I have learned so much about myself and those who were and are in my life since I was diagnosed 14 years ago."
3. CFS PATIENTS RUN FIRST-EVER AD IN THE WASHINGTON POST
From a reader--
"I love this article - FINALLY feels like some TRUTH is being put out to the general public: http://www.prnewswire.com/news-releases/chronic-fatigue-syndrome-patients-run-first-ever-ad-in-the-washington-post-111363234.html - Snippet: "ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks. "This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now." A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people."
4. FIBRO & FATIGUE CENTER COMMENT
From a reader--
"I just wanted to say that I too, was a patient of The Fibro and Fatigue Center in King Of Prussia, Pennslyvania. I had the honor and privilege of also being the patient of Dr. Garabedian. He enabled me to have the best quality of life that I had in many years. I saw him for 2 years and was financially unable to continue because of all our home repairs. I still follow his medical advice and hope to work with my current doctor until I can afford to go back. I should say that my insurance did cover some of my lab work and I ordered some of my supplements through Vitacost and Nature's Sunshine. All in all, I did very well inspite of the costs. I would encourage all your readers to find an Orthomolecular physician or one that is familar with Environmental Medicine and Endrocrine System. This will give them a good head start. Read as much as you can and never stop learning all there is to this condition. I have used many alternative therapies over the years. I must give my greatest physican the greatest credit- Yeshua!"
5. FOOD CHOICES IMPORTANT
From a reader--
"I’ve read with great interest the responses to readers who have used the Fibro and Fatigue Treatment Centers. I own the Jacob Teitelbaum books and subscribe to his newsletter, plus utilize his website often. After three long years, I am the one who wrote in to say that I was finally re-diagnosed (correctly it seems) with Migraine Variant/silent migraine in which the predominant symptom was NOT headache but rampant dizziness. I spent 3 years also struggling with varying degrees of CFS/Fibro symptoms as well. I am successfully taking 60mg split doses of Topamax per day. And, I have improved greatly and feel better than I have in 3 years. However, EVEN with Migraines, a wise recovering patient knows to WATCH YOUR DIET AND TYPES Of FOODS CONSUMPTION. That is the key to feeling better: reactions to various kinds of foods, or processed foods, or families of foods, whatever. But, if a patient is not willing to take a “scorched earth” approach in any of these conditions, progress and/or recovery probably will not follow regardless of medication or natural remedy. That has been my observation in research, forums, newsletters, and personal experience as well. And, it’s unfortunate because often the foods we need to cut back or eliminate are the ones that are most delicious or we are most fond of. And then the assistance of supplements or medications can often help boost us that much more so that we hopefully feel much better."
6. LIVING A NORMAL LIFE
From a reader--
"Just want you to know for certain how much your newsletter www.fms-help.com/newsletters.htm helped me to get better treatment that has vastly improved my life. There was a point I thought I was headed down the slippery slope toward unemployment, but I am much better. Thanks to your newsletter’s resource information, suggestions and information that convinced me not to give up until I found a physician that would help me, I have the right treatment now which is allowing me to continue to work my regular full time job, still the music director/ pianist at my church, and I live on a ranch and run a small cow-calf operation. Although I know I will never be normal, I still get more done in a day than many of my normal friends by finding ways to work around my limitations."
7. SPANISH XMRV RESEARCHERS WILL REPORT ON FINDINGS
From a reader--
http://www.prohealth.com/library/showarticle.cfm?libid=15773 - Spanish XMRV researchers to report Dec 9 on immune dysfunction they’ve found “in all CFS/ME patients” - December 6, 2010 - Snippet: "Following is a news release posted Dec 6 via Co-Cure by Clara Valverde on behalf of the Spanish CFS League – Liga SFC. This Thursday, December 9, we are organizing a big event here, in Barcelona, in which the Spanish XMRV researchers will explain their findings of XMRV in the Spanish CFS/ME population. They will explain their findings regarding the XMRV, and more importantly, they will explain the common immune dysfunction they have found in all CFS/ME patients: immune deficiency due to the CD8 cells (for comparison's sake: HIV is an disease in which there is immune deficiency due to CD4 cells, and we are immune deficient because of the low CD8s). They will also explain to the patients who will be present (we have invited patient associations, primarily) how we should live until there is a treatment for XMRV."
8. TSA SCREENINGS
From a reader--
http://www.humanevents.com/article.php?id=40395 - public groping sessions
9. THE STARVATION OF AMERICA
From a reader--
http://canadafreepress.com/index.php/article/30557 - New farming laws
10. UNINTENDED INTERNATIONAL SPREAD OF FAMILY OF RETROVIRUSES?
From a reader--
http://oneworldscam.com/?p=10783
FROM
DOM: Comments anyone? Write dombush@bellsouth.net.
11. BRAIN PARASITE
From a reader--
"Cheryl was rushed to hospital after having a bad ‘turn’ similar to a seizure. The hospital took quick action and did a CT Scan and later on an MRI scan of her brain. These tests shower a lesion (ulcer) wound on her brain – the result of a burst cyst. The cyst was caused by a parasite from eating pork – 3-5 yrs ago, it takes this long to travel from the digestive system to vital organs like the brain!! Cheryl’s RHS is numb and has pins and needles, although now the spasms have abated. She is able to talk and move around on the bed, but cannot stand or walk. The doctor’s still have her in ICU and are giving her medication to clear the parasite problem. She also has to have anti epilepsy medication for up to 2 yrs to quell any fits manating from the lesion scar tissue. The doctors predict a full recovery."
FROM DOM: There's a TV show called "Mystery Diagnosis" on the Discovery Health channel. Many times parasites are discovered to be the culprit behind many mysterious and dreadful ailments, but it seems that many doctors are not familiar with parasites.
12. HOLIDAY SURVIVAL TIPS
From www.legacyforlife.com/dominie--
FACT SHEET-HOLIDAY SURVIVAL TIPS
The winter holiday season is an especially stressful time for many people. As if you did not have enough to do between working, taking care of kids, parents, and the house, you now have to worry about decorating for the holidays, sending holiday greetings, getting kids to rehearsals, going to their shows, preparing for visits from relatives, it seems as if it will never end. The heightened stress during the winter holiday season often makes it even more difficult to maintain our weight because we may not exercise as diligently and we eat less healthfully.
Plan ahead
Think about what you will make for dinner night so you do not reach for “anything in the refrigerator”.
If you are going food shopping, to a restaurant (try to avoid buffets), or someone’s home, before you leave:
· Have a healthy mini-snack (grilled chicken, handful of nuts, humus and pita, or a bowl of soup) before you leave.
Or
· Have a half, or an entire, i26 FIT Shake. This high protein, high fiber, lower carb Shake is the only one in the world with i26 Hyperimmune Egg proven to deliver antibodies and other immune factors to help support immune and digestive health. The protein and fiber can help you go for hours without feeling hungry.
Make Appropriate Food Choices:
• Don’t stand near the food when you’re in a room with a
buffet, or tables loaded with food. If you go out to eat, use the meal option
instead of the buffet.
· Try to limit your intake of:
o Desserts, pastries, pasta, white rice
o Fried foods
o Alcohol (Alcohol has a lot of empty calories. Sip a glass of sparkling water, or a glass of wine, instead of having that second beer or drink.)
· Instead substitute servings of fresh or frozen fruit and veggies (especially colorful ones) to your diet.
Control your portions:
· You can eat almost anything you want as long as you just take one or two small bites and forget the rest. Often you’ll find that is really all you wanted.
· If you’re tempted to eat more, or go back for seconds, just remind yourself of all the hard work it’s going to take to work off the calories in the larger portion-sized serving.
· [By the way, be kind to yourself. If you stop with 2 cookies instead of having 6, you’ve taken an important step towards controlling your food intake, and not letting your food control you!.]
PHYSICAL ACTIVITY:
The holidays are an important time to try and maintain your fitness routine. Not only will it burn calories, but “pumping” the muscle will release immune factors that will help balance immune function (just as i26 does).
· Exercising, besides helping you maintain your proper weight, will help you deal with stress. Clinical studies have reported that exercise is better than medication for stabilizing emotions! [J Gerontology 2001 56:M497].
· Remember that every time you contract your muscles, they release anti-inflammatory and other immune-balancing factors which counteract the inflammation that your fat cells are pumping out.
· While watching TV or a DVD, use hand weights or resistance bands. Don’t just sit there, keep moving!
· If you are at your preferred weight, schedule 30 minutes or more of physical activity four or more times a week to keep your weight within your goals.
· If you are trying to lose weight, 45-60 minutes/day, as many days a week as possible, will really help you get those pounds off especially if you follow some of the tips above.
· If you are just starting out and can’t do extended physical activity, just exercise in 10 minute intervals. Multi-task by taking the dog walking for 10 minutes in the morning, go for a 10 minute walking lunch break, play 10 minutes with the kids, and then go for another 10 minute walk with your spouse at the end of the day. Time for the two of you! You both deserve [and need] it!
· If you decide to join a gym [a great holiday gift for yourself or someone you love!]; try to schedule time straight after work; before going home. (Once you’re already at home it takes a lot of discipline to go back out “just” to work out).
· Also, being in a group is a great motivator or walking with a friend, so think about this option.
· Whenever possible walk instead of sitting at your desk. For example, walk around the desk while you're on the phone; walk to a co-worker's desk instead of emailing him/her, take the stairs (if they’re safe), park away from the entry.
· Try scheduling a brisk walk instead lunch, or as a break after a holiday party or meal. And always remind yourself that doing some physical activity is better than doing none!
13. NEED A CHUCKLE?
From a music minister's newsletter--
"Two young boys were spending the night at their grandparents' house. At bedtime, the two boys knelt beside their beds to say their prayers, when the youngest one began praying at the top of his lungs: 'I PRAY FOR A NEW BICYCLE.....I PRAY FOR A NEW WII....I PRAY FOR A NEW IPOD.' His older brother leaned over, nudged the younger brother and said, "Why are you shouting your prayers? God isn't deaf." To which the little brother replied, "No, but Grandma is!"
14. NEW FIBRO POEM
Sent in by reader Kacy Wright kacybaldock@yahoo.com--
MY LIFE WITH FIBROMYALGIA
FIBROMYALGIA HAS NO CURE YET
I WAS HAPPY THE DAY MY DOCTORS AND I MET
TO THINK MY PAIN COULD BE OFFSET
MEDICINE IS A START I BET…
I AWAKE IN THE MORNING IN SO MUCH PAIN
UPSET AT THE LIFE I CAN'T MAINTAIN
I FEEL A WEIRD FEELING IN MY BRAIN
WONDERING IF I AM GOING INSANE...
THE PAIN FILLS MY BODY IN DIFFERENT WAYS
LYING IN BED FOR SEVERAL DAYS
HOPING TO RELEASE A PAINFUL DAZE
BUT I HOPE AND PRAY AND THE PAIN STILL STAYS…
MY PAIN HURTS HERE AND THEN THERE
IT'S NEVER THE SAME BUT IT HURTS I SWEAR
ONE DAY IT'S MY HIPS THAT FLARE
OTHER DAYS ITS MY HANDS THAT WEAR...
MY LIFE IS NOW PAIN AND SLEEP
AND THO I SLEEP IT IS NOT DEEP
SO I WANT TO SLEEP AND COUNT MY SHEEP
BECAUSE MY SANITY I HAVE TO KEEP.
Written by Kacy Wright kacybaldock@yahoo.com
FROM DOM: To read more poems about fibromyalgia sent in by newsletter readers, click on www.fms-help.com/poems.htm.
15. FIBRO & FATIGUE CENTER (DALLAS) DOCTOR IN TROUBLE
From a reader--
http://www.casewatch.org/board/med/stevens/order.shtml
16. BED BUG BUSTING
From a reader--
II Corinthians
1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at
www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their
families.
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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.
