DOM'S NEWSLETTER

www.fms-help.com/120210.htm

December 2, 2010

Scroll down and check out the interesting topics below. Some may be well worth a few moments of your time!

This is a Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.

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20 TOPICS below.  Don't miss the RED ones.  Readers comments in BLACK.  My comments in TEAL.



1.  READERS WRITE
 
 "Your newsletters are awesome and such a great gift to us all!"

 "Thank you so much for the time you take to do this newsletter!  I really appreciate the inspiration and hope that it gives so many.  I know that is a gift from God." 

 

 2.  NEWSWEEK ARTICLE ABOUT CFS & XMRV

 From a reader--
  
http://www.newsweek.com/2010/11/28/could-a-virus-cause-chronic-fatigue- syndrome.html -  Snippet:  "Validation In a Virus?  For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit. by Claudia Kalb,  
 
 
3.  WILSON'S SYNDROME NOT VALID PER MAYO CLINIC
 
From a reader--
 
http://www.mayoclinic.com/health/wilsons-syndrome/AN01728 - Snippet:  "Wilson's syndrome, also referred to as Wilson's temperature syndrome, is a label applied to a collection of nonspecific symptoms, including a relatively low body temperature, in people with normal levels of thyroid hormones. It is not an accepted medical diagnosis."
 
FROM DOM:  I have heard from several people with FMS/CFIDS who went to Mayo Clinic, but were not helped there.  I'm sure that Mayo does a great job with many illnesses, organ transplants, etc., but I don't know if they are on the "cutting edge" of our condition.  If you have been to Mayo for fibromyalgia (FMS) or chronic fatigue and immune dysfunction syndrome (CFIDS) and would like to report your results, please write dombush@bellsouth.net.
 
 
4.  VACCINES CAUSING CFS SYMPTOMS
 
From a reader--
 
"This sure sounds like us, doesn't it?  Wonder how many of us are like this and haven't put two and two together.  See http://vactruth.com/2010/01/12/the-british-government-refuse-to-compensate-health-workers- who-become-ill-after-conditional-vaccines/."
 
  
5.  FIBRO & FATIGUE CENTERS
 
From a reader--
 
"I have been concerned about the legitimacy of the treatments provided by the Fibromyalgia and Fatigue Centers Inc.  Particularly, I've spoken with many patients who say they were lured to those places by the statistics they provide practically guaranteeing a cure.  These days, that clinic is offering a year long 'program' which basically means a patient pays $6,000 and gets unlimited doctor and IV supplements.  But patients still pay for labs and prescriptions.  That is a lot of money for most people, and that would be fine if it worked, but so many people I have spoken with simply say it does not.  I am attaching a link here to a public order from the Texas Medical Board about one of their doctors, in which he was cited because he 'violated the standard of care by treating the patient with non-therapeutic drugs and supplements.'  http://reg.tmb.state.tx.us/TMBPublicWebSite/BoardOrders/ViewBoardOrders.aspx? ID_NUM=58407&SESSION_ID=114373072.  Please tell your readers to use caution in selecting their physicians.  I'm sure most already know that, but sometimes when patients are desperate, they will believe false promises."
 
FROM DOM:  I have heard from many readers who went to an F&F center.  None were “cured.”  Some were “helped.”  Most were not helped long term.  All said it was tremendously expensive.  I have my own views (I’m not a doc) about what causes FMS/CFIDS  – this is from my personal experience and I have research links on my homepage at www.fms-help.com.  I think the Whittemore Peterson Institute finding of XMRV may be the most definitive thing yet.  I am most interested to see what will result from this.  Research is still in its infancy.  In my (non-professional) opinion, FMS/CFIDS is the result of the hypothalamus malfunctioning due to a possible viral attack. I haven't reported on the Fibro and Fatigue Centers recently, but wondering if other readers, who have visited a Fibromyalgia & Fatigue Center http://www.fibroandfatigue.com/treatment-center-locations-and-contact- information.htmlwould care to comment.  Write dombush@bellsouth.net.
 
  
6.  ENCOURAGING WORDS
 
“The Lord is a shelter for the oppressed, a refuge in times of trouble.”  (Psalm 9:9 NLT)
 
  
7.  CAREER DESTROYED BY CFIDS
 
From a reader--
 
"I have been battling Chronic Fatigue & Immune Deficiency Syndrome for 
25 years.  It has literally destroyed my life.  I went from being a 
hard working, productive, career woman with many goals in life, to 
being a sickly woman  who is functioning at about 15 to 20% 
productivity. Over the past 25 years, I have tried every imaginable treatment that I 
am aware of and nothing has worked."
 
FROM DOM:  Sounds familiar!  See www.fms-help.com/fatigue.htm.  Here are some suggestions - things I discovered that help me stay as functional as possible: www.fms-help.com/what.htm.   Want to read a list of occupations (or former occupations) of my readers?  See www.fms-help.com/occupations.htm.
 
  
8.  SAYING WORDS BACKWARDS
 
From a reader--
 
"Have you, or heard of anyone else, "hearing" wrong words from people talking and/or saying words in the wrong order. For example, my husband said to me earlier something about his hat. I thought he said "....my cat."  I reminded him we didn't have a cat. He looked at me strangely and sait, "What in the world are you talking about!!?"  I felt stupid. That was one of many examples...not just to my hubby, but to my kids/parents/siblings. Hmm. Oh well...just wondering if I'm the only one dealing with this type of thing. I go back to the rheumatologiest on Thurs. Dec. 9th. Maybe mention it to him? My neurologist ran several tests on my and said he would try to find out what may cause it. My body is just such a guinea pig.  Sometimes I also say words "backwards." Like Table coffee instead of coffee table. Things like that. It's very depressing to say the least. At first my teenaged kids laughed at me (= more stress) but now they are starting to see how sick I am....or at least it makes to me in my own head."
 
FROM DOM:  Yes.  I used to type words backwards when I was a legal secretary when I developed fibro in 1982.  See www.fms-help.com/brain.htm for info about the brain functioning in reverse with fibromyalgia.
 
  
9.  READER WITH LYME WISHES TO CORRESPOND
 
Please reply directly to Susan susanfig@yahoo.com--
 
"I am battling lyme and all its co-infections, adrenal fatigue, ME, etc.  I wanted to reach out to others who posted about possibly having lyme,
since lyme is such a complicated disease and treatment is horrible.  I haven't been able to eat for the past 4 weeks and lost 9lbs.  The hospital ran every test in the world ...after talking to my other 'lymie' friends online, I realized the severe nausea is from bartonella one of the most dangerous and fast reproducer co-infections of lyme.  I didn't know how much of a load of bartonella bacteria I had and it laid me out - literally.
I would love to try and help others out - this disease is a nightmare.  I haven't worked since last year - was very athletic and energiized.  I'm filing for disability and will only be 42 in January. - Susan susanfig@yahoo.com"


  
10.  BEST & WORST FRUITS & VEGETABLES
 
From http://articles.mercola.com/sites/articles/archive/2010/11/29/recommended-vegetable- list.aspx--
 

Of the 43 different fruit and vegetable categories tested by the Environmental Working Group and included in their Shoppers' Guide to Pesticides in Produce, these 12 fruits and vegetables had the highest pesticide load, making them the most important to buy or grow organic:

  • Peaches
  • Apples
  • Sweet bell peppers
  • Celery
  • Nectarines
  • Strawberries
  • Cherries
  • Lettuce
  • Grapes (imported)
  • Pears
  • Spinach
  • Potatoes

In contrast, these foods were found to have the lowest residual pesticide load, making them the safest bet among conventionally grown vegetables:

  • Broccoli
  • Eggplant
  • Cabbage
  • Banana
  • Kiwi
  • Asparagus
  • Sweet peas (frozen)
  • Mango
  • Pineapple
  • Sweet corn (frozen)
  • Avocado
  • Onion

So if you need to work within a certain budget, use this information to help guide you to the best choices when it comes to lowering your overall pesticide exposure.

 

11.  DRUG COMPANIES

From a reader--

"Sure wish the US pharmacopia had OUR best interests at heart.  unfortunately, with their track record of late, all they really care about is profit -- as usual.  they have been charged with falsifying drug studies to promote drugs -- meaning that people are taking life-altering drugs that are not appropriate to the condition -- and charged with false advertizing, all kinds of unconscionable things... they have had to pay over 3 billion dollars in judgments against them in the past few years, and they just see that as the 'cost of doing business.'  i have no confidence in the drug companies anymore."

 

12.  LOST ABILITY TO SLEEP

From a reader--

"I am really speechless as to the lack of the ability to fall asleep and stay asleep in my case of fibro.  When I was at varsity, and a few good years after that (I am in my mid-50's now) I could fall asleep everywhere and anywhere.  To such an extent that I once took a bet that I call sleep on an ironing board the whole night without falling off - and one.  Now, the amount of sleep supplements I take are astounding.  My doctor wont prescribe anything to make me sleep, as both my Mom and my niece were/are addicted to sleep tabs.  My relative spent 2 weeks with me, and I was shocked to find out that she takes up to 15 a time!!!!  Scary stuff, she was taking 4 sleeping tabs at work.  At present I take 11 supplements to enable me to sleep and stay asleep, but I often get up at 2 am to make some Horlicks and add honey to it, then have no problem falling asleep again.  I find that a supplement will last me 3-6 months, then my body gets used to it, and have to add another one.  My latest one I add is 5 drops of Bach Rescue night, and it keeps me in a deep sleep from about 3am to 7am.  Luckily I dont have to work.  But have had visitors for 4 weeks, and even if they are family, just filling the kettle with extra water to make more coffee, becomes a grind!"

  

13.  WASH NEW CLOTHES BEFORE WEARING

From a reader--

This is from Consumer Reports:  "Buying new clothes can be exciting, and some people can’t be bothered with the seemingly wasteful practice of washing new clothes before wearing them. But one Consumer Reports staffer who recently experienced headaches and a sore throat suspects that his impatience may be the cause. He wore his recent purchase before sending it for a spin in the washer to rid it of the chemicals commonly used to keep new clothes looking, well, new. Substances like formaldehyde and many other allergenic compounds are used in fabrics for a variety of reasons, such as to help them resist wrinkles and shrinkage. Since just one wash can eliminate or reduce levels of a number of these substances (along with any wayward bug that might have come from the person who tried the shirt on before you!), it’s a good idea to wash new clothes that will be worn against the skin before you put them on. The U.S. doesn’t regulate formaldehyde levels in clothing. But certain other countries do, and a recent report from the U.S. Government Accountability Office noted that levels in textile products they tested here in the U.S. met the most rigorous standards established elsewhere—about 75 parts per million for items that are in direct contact with the skin.  But that might not be enough for some people. By some estimates, about 9 percent of the U.S. population is so sensitive to formaldehyde that even low level exposures could be enough to set off an uncomfortable rash, or a severe allergic reaction. And a few items GAO tested did reach as high as 200 ppm. According to the GAO report, allergic contact dermatitis characteristic of formaldehyde exposure includes redness, swelling, blisters and flaky dry skin that can burn or itch.  Fortunately for our staffer, his symptoms were limited. Only a patch test will tell for certain if formaldehyde or other fabric treatments were the cause. Then again, it may just have been a reaction to shelling out cash for new duds. - Consumer Reports"

  

14.  VIDEO ABOUT M.E./CFS

From a reader--

"Everyone in the following video has been stricken with ME/CFS for many years or decades except for the doctors and the people who turn their heads and walk away:  http://www.youtube.com/watch? v=00BZCjVK_6I&feature=player_embedded."

 

  15.  CHRISTMAS SONG

From a reader--

"http://www.youtube.com/watch_popup?v=pPViKJRHyZo&vq=medium - Here’s the story behind the song: "Where's the Line to See Jesus?"  While at the mall a couple of years ago, my then four year old nephew, Spencer, saw kids lined up to see Santa Claus. Having been taught as a toddler that Christmas is the holiday that Christians celebrate the birth of Jesus, he asked his mom, "where's the line to see Jesus"? My sister mentioned this to my dad, who immediately became inspired and jotted words down to a song in just a few minutes. After putting music to the words, and doing a quick recording at home, he received a great response from friends. He sent the song off to Nashville without much response, except for a Christian song writer who suggested adding a bridge at the end of the first chorus. My dad then asked if I wanted to record the song to see what we could do with it. I listened to the song, made a few changes to the words to make it flow better, and we headed to Shock City Studios. It was at the studio where Chris, owner and producer, rewrote the 2nd verse and part of the chorus... with goosebumps and emotions high, we were all hopeful and felt like we had something special. The demo was recorded in just under 2 hours and sent off again to Nashville ... still no response. Then 2 weeks before Christmas last year, my cousins Greg and Robbie decided to do a video to see what we could accomplish on YouTube. The first day we had 3000 hits and it soared from there. We received e-mails, phone calls, Facebook messages from people all over asking for the music, CD's, iTunes, anything... we had nothin'. After a couple of meetings with Chris following the amazing response, we got serious. We headed back into the studio this past spring... this time with guitars, drums, bass, pianos, choirs... the real deal.... and here we are today. Getting iTunes set up, a website put together, and loving that thousands upon thousands of Christians have come together... remembering the true meaning of Christmas. Out of the mouths of babes come profound truths that many adults can not understand. Hopefully Spencer's observation will cause people all over to reflect on the love of Jesus, and that one day we will all stand in line to see Him. We are most thankful to our Heavenly Father to have this chance to share our music with you. Merry Christmas everyone."


16.  EARTHING

From a reader--

"I am writing to tell you about a health discovery that I think can make a significant impact on those with chronic fatigue and fibromyalgia syndromes. Its called "Earthing" and is based on simple scientific principles that make a lot of sense to me intuitively and intellectually.  Here's the theory in a nutshell:  The surface of the Earth is a rich source of healing energy in the form of negatively charged electrons and provides the stable grounding to function well. We have separated ourselves from that energy with by wearing insulating footwear and living, working and sleeping in elevated structures of nonconductive materials. Earthing is the practice of reconnecting with this energy by standing or walking barefoot on the ground or through the use of conductive bed sheets and floor pads linked by a wire to a ground rod outside or plugged into a wall outlet with a ground system. Discovered by a man named Clinton Ober ten years ago, the therapeutic benefits of Earthing have been verified by scientific testing and are starting to get the attention of open minded persons in the field of health and medicine.   Several weeks ago I began  walking around barefoot outside for an hour or so each day and even slept outside in a tent. I noticed the difference. Then I ordered a grounding pad which I put under my feet when I'm using the computer, working at my desk or watching T.V. and a conductive sheet which I sleep on each night. I feel some buzzing or tingling in my feet especially when I first ground myself but that seems to be going away gradually. In just a week I noticed a marked improvement in how much activity I could get away with without my muscles becoming sore afterwards. I had been managing this with low intensity laser therapy twice a week and EMG biofeedback training but the earthing works much better and doesn't require appointments or money to see my chiropractor. I'm also sleeping more deeply although still disturbed. My intuition is that I am going through a process that is providing the "grounding" to totally heal. A couple of my other fibro friends have started earthing as well with good results.  I have listed Earthing as a strategy for healing in the opening post of my blog www.fibrofriends.typepad.com but will wait until I see how I respond over time as well as others I know who are trying this before I write an extensive post on this. In the meantime I wanted to share this information with you. I highly recommend looking into this at www.earthing.com and reading the book "Earthing, the most important health discovery ever?" It will blow your mind. I believe that this is the final and most important piece of the puzzle in my own understanding of and recovery from CFS and FMS. Earthing is helpful for sleep, inflammation, pain and autoimmune conditions. I personally think that it will prove extremely beneficial for those with CFS and FMS who are "electron deficient" and hypersensitive to electromagnetic fields, free radicals and other interferences. The good news is Earthing costs next to nothing compared to other therapies - only a very small personal investment for products that ground you. No appointments, no doctor fees, no supplements, etc. You simply connect to the earth and heal. This may sound too good to be true but its worth a try and is completely safe even for the most sensitive individuals."

FROM DOM:  To learn more about "earthing" reported in my past newsletters, scroll down to use the Google search box at the end of this page.

 

 17.  DRINKING & DRIVING

From a reader--

http://www.youtube.com/watch_popup?v=Z2mf8DtWWd8 - CAUTION:  VERY GRAPHIC!  (Don't watch if you are sensitive to gory visuals.)  This needs to passed around to every human being who has the keys to a vehicle and the capability of driving while under the influence with impaired judgment and the possibility of causing a life-changing incident to happen to everyone he or she comes in contact with while in this condition.  This is perhaps one of the most intense commercials I've ever seen.  I hope that by passing this along to others, it will make a difference and save even one life.  Australia should be complimented on having the guts to "tell it like it is" and get this campaign out to all of its licensed drivers and to air it on TV...it is very moving and life-like, so it has a very strong impact this holiday season.  Please pass it along to all of your friends and maybe you can be responsible for saving some lives."

 

18.  WALL STREET JOURNAL - XMRV HEALTH BLOG<

From a reader--

"Wall Street Journal health blog. Apparently an Amy Dockser Marcus often covers XMRV news in this blog.

http://blogs.wsj.com/health/2010/11/23/abbott-roche-gen-probe-among-those-seeking-xmrv- test/

http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

WSJ article from 11/23/10:

http://online.wsj.com/article/SB10001424052748704243904575630700111729446.html"

 

19.  CHRISTMAS BLUES?

FROM DOM:  Here are some tips on managing holiday depression: www.fms-help.com/Christmas.htm

 

20.  STATINS, CHOLESTEROL, GRAVE'S DISEASE & CFIDS/M.E.

From a reader--

"I developed CFIDS/ME 7 years ago, in conjunction with “treatment” for Grave’s Disease [hyperthyroidism].  Due to my systemic sensitivities, I know better than to try the latest things being sold to the public, like screening colonoscopies, and statin drugs.  I too have high cholesterol.  Even went vegan for 6 months and it did not budge.  Am horrified by what I read about how statins work and their side effects.  Am intrigued by the Unified Theory of Linus Pauling and Rath regarding the real purpose of cholesterol (as a bandaid for the arteries) and Vitamin C megadosing, along with Lysine.  Too extensive to go into here, but check it out.  I have been able to lower my triglycerides taking 5 Carlson’s Salmon Oil caps daily, and my HDL is good.  My thyroid levels, via exogenous thyroid supplementation after having my thyroid ablated, are as good as they are going to get. (low thyroid has historically been a red flag marker for high cholesterol and vice versa).  It’s a mystery.  My family has bigtime heart attack history, but I refuse to believe that statins will do anything but end my life sooner."

======================================

FROM DOM:  Well, that's all for now.  Here's my best holiday tip for fellow fibromites: Don't overdo it!  Pace yourself and avoid stress as much as possible.  Don't buy into other people's expectations.  I've had to curtail many activities that I would love to have been a part of, but I know where my limits are.  A list of things I use to stay functional and pain free is at www.fms-help.com/what.htm.  I'm thankful to be able to work and to keep up with church and home responsibilities as well. 

Finding things that helped my sleep disorder have been most helpful.  When I sleep well, I feel bulletproof the next day.  When I sleep poorly, I suffer horribly.  My insomnia story is at www.fms-help.com/insomnia.htm

BTW, my ears ring 24/7 - it is soooo annoying!  I have had tinnitus for decades.  If anyone has found a solution for ringing in the ears, please write dombush@bellsouth.net.  I am about to try Quietus, but it is very expensive.  Still, if it helps to keep my sanity, it will be worth it.  As a piano teacher and church musician, I am around loud sounds every day.  My dear husband says I should try Quietus.  Anyone have experience with this?

Your fibro sister,

Dominie Bush

www.fms-help.com

dombush@bellsouth.net

 


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.