DOM'S NEWSLETTER
April 28, 2007
www.fms-help.com

A compassionate newsletter for people with FMS/CFIDS/M.E.

There are 23 interesting topics below in PURPLE.  My comments are in TEAL. - Dominie


1. READERS WRITE

"When I read your newsletter I feel as though I finally am understood by you and your readers. My family just doesn't realize how much pain I am in - why I can't remember so many things - why I am so tired, etc.....It's like coming home to me - so this is why I'm like this - you all understand. Your newsletters are so important to me and many others who have fibromyalgia."

"I enjoy your newsletter because it gives me insight into fibromyalgia and what I can expect and what works for some and what doesn’t work for others."

"I am not superman. But I am a handicapped superman just trying to get normal daily stuff done, like take a shower and make dinner all in the same day."

"I love your newsletters!!!! They are so helpful for someone with Fibromyalgia, Chronic Fatigue Syndrome, etc."

"I just stumbled onto your web site and I want to thank you as this site may help save my life as I am at the end of my rope."

"I just feel like finally I have someone to talk to who doesn't think that I am crazy.  Someone that doesn't say, 'Oh, you still feel bad?'  I want to scream, 'When are you going to get it?'" 
[I so hear you!  For immediate emotional support, visit "My Name is Fibromyalgia" www.fms-help.com/mnif.htm and "Letter to the Healthy World from the Land of Chronic Pain and Fatigue"www.fms-help.com/healthy.htm.]
 
 
2. SUGAR AND FURRY TONGUE
From a reader--
"I saw your question about the numb lip, and some of the responses some of your readers had. Just today as I read your current newsletter about it, it brought to mind a symptom I’ve been having. It is similar to your numb lip, but mine is my tongue. It doesn’t go completely numb like your lip did, but it has a weird tingly sensation whenever I eat sweets. I stay away from any artificial sweeteners because the result is not worth the extra calories I may have saved by eating sugar-free foods. I think I have had sensitivities to sugar for about 5 years, but because it’s so hard to stay away from them, I didn’t give them up. I used to feel flushed, sweaty, and in severe pain for about an hour after consuming anything with an excessive amount of sugar in it. What is excessive? Any candies, baked goods, soda pop, some breads, ice cream, etc. Doesn’t leave much to enjoy does it? It got to the point where I couldn’t stand it anymore, so I had to cut back quite a bit, but still not giving them up completely. Up until recently I would still enjoy baked goods from time to time, and ate bread once every couple days. About 6 months ago I quit drinking pop altogether, and about a month ago I stopped eating candies completely because, like I said, it wasn’t worth the pain and flushed feelings I would experience. But I noticed that whenever I would eat baked goods with a lot of sugar in them, my tongue would tingle and then anything I would eat after that would taste funny. It almost felt like I had a fur coat on my tongue. Then yesterday I had my first candy in over a month—just a few jellybeans and a couple sticks of licorice. The crash I experienced was horrible. I almost felt depressed, to the point of crying, and sluggish, and very irritable. I didn’t feel flushed like I expected, but I was in pain. After work I went for an hour bike ride with my son, and the fresh air and exercise and all the water I drank before and during the ride, flushed the sugar from my system and I felt much better. But I committed to myself right there that I would stay away from all forms of candy, and most sweets. In the past couple months that I’ve cut back on sweets I’ve felt better than I have in over 3 years, and I’ve even lost some weight, about 12 lbs—that’s just an added bonus. I was just wondering, does anyone else experience these symptoms when eating sweets, including the fur-coated tongue?"
 
[Use the search box on my homepage www.fms-help.com to look for these words: yeast, candida, candidiasis, sugar, hypoglycemia. I have had a "coated tongue" for decades after taking multiple antibiotics for a severe illness. Nothing seems to clear it up.]
 
 
3 COGNITIVE DECLINE WITH FMS/CFIDS
[revisted from www.fms-help.com/041807.htm, Topic 16]
Reader 1--
"The research you quote below on the brain ... I cant even begin to go read. It scares the heck out of me. Fortunately I have a background in research and am pretty good at taking research papers apart.. like who were the women, where were they from, what had they been exposed to and a million more questions... 10 women? thats all ? and should I take it serioiusly. But of course....... having suffered 20 years.. and I know the cognitive losses .. once being Mensa qualified to now feeling l cant learn my own phone number ... This is terrifying. Does it get any better if I read more of the study? Is it good enough info for the newsletter and all of us who are now wondering what will become of us if we lose our lives and brains too... Yikes....... and again it hurts to think of all the people who have treated me like I had a bad attitude and if I just got over my "anger" (existant or non existant) I would be fine... (now that makes me angry!) What have we been exposed to that has hurt our nervous systems like this?"

McGill Centre for Research on Pain, McGill University, Montreal,
Quebec, Canada H3A 2B2.
Fibromyalgia is an intractable widespread pain disorder that is most
frequently diagnosed in women. It has traditionally been classified as
either a musculoskeletal disease or a psychological disorder.
Accumulating evidence now suggests that fibromyalgia may be associated
with CNS dysfunction. In this study, we investigate
anatomical changes
in the brain
associated with fibromyalgia. Using voxel-based
morphometric analysis of magnetic resonance brain images, we examined
the brains of 10 female fibromyalgia patients and 10 healthy controls.
We found that fibromyalgia patients had significantly less total gray matter volume
and showed a 3.3 times greater age-associated decrease in gray matter
than healthy controls. The longer the individuals had had fibromyalgia,
the greater the gray matter loss, with each year of fibromyalgia being
equivalent to 9.5 times the loss in normal aging.
In addition, fibromyalgia
patients demonstrated significantly less gray matter density than healthy
controls in several brain regions, including the cingulate, insular and
medial frontal cortices, and parahippocampal gyri.
The neuroanatomical
changes that we see in fibromyalgia patients contribute additional
evidence of CNS involvement in fibromyalgia. In particular, fibromyalgia
appears to be associated with an acceleration of age-related changes in the very substance of the brain.
Moreover, the regions in which we demonstrate objective changes may be functionally linked to core
features of the disorder including affective disturbances and chronic
widespread pain.

and this on chronic fatigue

"UNDER the microscope, it could not have been clearer. Sophia Mirza's brain and spinal fluid showed indisputable evidence of inflammation and cell death. The discovery, by the neurologist Abhijit Chaudhuri and a neuropathologist colleague, marked the first time a serious abnormality confined to the central nervous system had been identified at the post-mortem examination of a patient whose principal diagnosis was chronic fatigue syndrome." Read article at http://www.smh.com.au:80/news/science/victims-give-clues-to-the-answers/2007/04/11/1175971183260.html.
[In response to the horrifying information in the last newsletter www.fms-help.com/041807.htm about brain degeneration with FMS/CFIDS....sadly, cognitive decline for many people with fibro is a fact.  People who don't think that we are sick or think we are malingerers will one day be proved wrong, wrong, wrong!! This reader wondered what is causing the brain problems. I'm not sure, being neither scientist nor doctor, but here are some theories on my site -- www.fms-help.com/mycoplasma.htm, www.fms-help.com/aids.htm, www.fms-help.com/brain.htm, www.fms-help.com/bodyclock.htm, www.fms-help.com/causes.htm www.fms-help.com/nervous.htm, and www.fms-help.com/autonomic.htm.]

Reader 2--
"I've been doing alot of research of late and have found through medical journals that the drugs "prescribed" for those with Fibro are actually to blame for the cell death. Most are caused by antidepressants! Other causes are by those drugs used to keep the "wakefulness" within the patient, or, in other words: "speed" (like Provigil and Ritalin). Serotonin is essential for information to pass between the nerve cells. What these drugs do is keep it around longer than it should be (with Fibromyalgia, there is a loss of serotonin = fibro fog) and it actually erodes/kills the cell(s) by staying active too long after the information has passed through. The only thing we can do is use "natural" means such as St. John's Wort for depression to prevent this occurance. At least, this is what is recommended. I've stopped taking the Provigil after reading a newest article about the harm to my brain. I'd rather have the "fog" than have dementia hit me sooner than it should or would!!"


4. LIVER TOXICITY
Reader 1--
"I especially appreciated the comment from the person (#9 -Doctors) www.fms-help.com/041807.htm who questioned what it is about current healthcare that leaves patients having to research their own problems, as a few months ago I'd (successfully) gone through another of my own rounds of 'do it yourself' research. This time re: hepato-toxins a/k/a liver poisons. see www.medicinenet.com/drug_induced_liver_disease/page8.htm along with www.emedicine.com/med/topic3718.htm These are good starting points for anyone wondering if they're being poisoned by their medication. In my case I discovered that along with the many Rx liver poisons I'd taken over the years, particularly since being diagnosed with RA and then fibromyalgia, I was still taking an exceptionally toxic substance... prescription estrogen. I took it for 12 years. Haven't taken it since... and not doing so has created a whole new set of discomforts, but I have more energy than I've had in a long time. Maybe I don't also gave chronic fatigue syndrome after all!.......This leads to my shock and sense of horror at reading #17 in the newsletter re: (Dr?) Teitelbaum's treatment? cure? or what? I'm not certain. Any one of the medications listed there will obviously affect the person taking it neurologically and/or on some other level. All of them in combination? I'm not a pharmacist, pharmacologist, doctor, or a scientist of any sort...but this sounds like a regimen so dangerous that a lab rat wouldn't be put through it."

Reader 2--
"I would suggest to anyone taking "a lot" of medications to request blood work to check their liver function, as medications can be toxic. I also find it unnerving that a doctor would perscribe so many medications at once, as mentioned in # 17.... as she stated, how do you know which one is working, as well as several meds are treating the same problem.............plus the work on the liver to filter through all these makes my head spin.  Does this doctor have stock in these drugs, I wonder!?"
 
 
5. NUMB LIPS
[revisited from www.fms-help.com/041807.htm]
From a reader--
"Just to let you know I have had exact same symptoms in the last month. I am wondering if it is seasonal change that body goes through caused that. I have had cold sores, chapped lips, peeling, all the same things. Tea Tree oil seems to help fight off the viruses, so does Oregano oil. But be prepared for a little stinging with oregano oil."
[BTW, my upper lip is still slightly numb - some days it appears swollen - like I've had botox injections - but most days it is flat and sunken in now and very taut, almost like scleroderma.  So weird!  ]
 
 
6. SLEEP
From a reader--
"I HAVE FIBROMYALGIA AND CFS ETC.. I HAVE ALOT OF TROUBLE SLEEPING I HAVE BEEN TRYING NATUAL STUFF CAUSE NOTHING ELSE WORKS. WENT TO A HEALTH FOOD STORE AND BOUGHT SOMETHING CALLED (COFFEA CRUDA 200) ITS NATURAL TO HELP YOU SLEEP ITS BEEN HELPING ME FALL ASLEEP AT NITE I HAVE ALOT OF PROBLEMS FALLING ASLEEP AND STAYING ASLEEP. SO ITS BEEN HELPING ME, YOU PUT 5 PELLETS UNDER YOUR TOUNGE 3 TIMES A DAY I HAVE BEEN USING IT FOR TWO WEEKS NOW. HERE IS SOME INFOMATION ON COFFEA CRUDA 200, Coffea Cruda - Homeopathic Remedies."
[For a list of things I've tried for sleep, see www.fms-help.com/sleep.htm.]
 
 
7.  MRSA - STAPH INFECTION
From a reader--
"I was just diagnosed with fibromyalgia.  I have been sick basically since being a teenager, first with endometriosis.  After getting that in control, about 3 years ago I contracted the staph infection MRSA, I am sure that you are familiar with it.  I had pneumonia and had to have surgery, and also had pleurisy.  Well, now I have asthma, and get pleurisy all of the time, and I am susceptible to MRSA.  For the last three months, the pain in my body had intensified greatly.  Since contracting the MRSA, I have never been the same."
[Wow.  This story sounds a lot like mine www.fms-help.com/fibro.htm except for the MRSA.  If you contracted MRSA which brought about your FMS/CFIDS, please write me at dombush@bellsouth.net.  Also, check out my homepage at www.fms-help.com - look in the yellow box on the left for links to info on viruses causing FMS/CFIDS.] 
 
 
8. SKIN CRAWLING SENSATION
[revisited from www.fms-help.com/041807.htm]
From a reader--
"I have this, bad.  The only thing I've found that makes it go away is Neurontin.  I don't even have to take a very high dose.  This lady's site was a huge help in teaching me how to take Neurontin, years ago:  http://web.tampabay.rr.com/lymecfs/nfaq.htm.  Her email list was also unparalelled: 'Since 1998, Neurontin-L, a private email list, has been in operation specifically for folks using Neurontin for "off-label" purposes. To join, please write to neurontin-l-request@maelstrom.stjohns.edu with a short explanation of your interest in joining the group. Please include your first and last name (or initial).'"

 
9.  HAIR COLORING & CHEMICAL SENSITIVITIES
From a reader--
"Can you ask your readership of what kind of hair coloring products they use and how they manage their chemical sensitivities?  I have been asked this question too many times and fitting enough, because I now developed a chemical sensitivity to hair coloring products too. This CFS/Fibrobabe wants to know what other CFS/Fibrobabes are doing to keep their vanity in place and or to become more beautiful.   I already have the information on Robert Craig - Chemical Free Hair Dye: http://www.dermadoctor.com/pages/newsletter290.asp?WID.   He even sends you a strip to find out what kind of water you have - soft or hard. I asked my hairdresser to order his products but they were not interested and they suggested the one that they have in house called Wella, which does not have ammonia but I believe it has resorcinol and alchohol. I tried to find the through their web site, called them was placed on hold and the person on the other line hung up on me. It would be nice to be able to find out if anyone from our community has tried it before and if worked as far as reactions.  I found three Italian brands - two are sold at Whole Food Markets and one which is called Tocco Magico (Made in Italy too) are sold through beauty shops but I haven't had the chance to inquire in Florida."
[I am an aging "CFS/Fibrobabe" myself, so please send comments about hair coloring products to dombush@bellsouth.net. I'll put them in the next newsletter.  I never realized how gray hair can make you feel old until mine started turning!  I know hair coloring is not good for you - I read somewhere that it is correlated with an increased incidence of bladder cancer.  But good grief!  I hope not!!]
 
10.  DR. TEITELBAUM
[revisited from www.fms-help.com/041807.htm]
From a reader--
 
"I've been looking at Dr. Teitelbaum's site extensively and my understanding of it varies greatly from this reader's. [See previous newsletter.] I think his program is the best that is widely available for those of us who want to combine alternative and traditional treatments.  For a summary of his protocol:  https://www.endfatigue.com/home.nsf/Basic?OpenFrameset&Frame=main_frame&SRC=Editable+Documents/Treatment+Protocol?OpenDocument  For a full explanation of his Treatment Protocol get the book "From Fatigued to Fantastic".  He does not by any means say that everyone should do all of the above.  He recommends that we try the herbals FIRST and the prescription meds ONLY if those do not work.  He recommends specific testing and tells how to get it (on the website go to Tools and Support/Online Program then click the link in the lower right corner, "Click Here For a Laboratory Requisition Form To Take to Your Lab to Have Testing Done"), to tell exactly which treatments will be most beneficial TO THE INDIVIDUAL.  His site is currently in a bit of flux, as he has just been named Executive Director of the Fibromyalgia and Fatigue Centers:
Board Certified Internist Jacob Teitelbaum, MD Joins Fibromyalgia & Fatigue Centers, Inc. as Medical Director - Fibromyalgia & Fatigue Centers, Inc. (FFC) proudly announces that Dr. Jacob Teitelbaum has joined the national "Centers of Excellence" as their Medical Director. Dr. Teitelbaum is a renowned thought-leader, author, lecturer, and clinician in the field of effective treatment for Fibromyalgia and Chronic Fatigue Syndrome (CFIDS).  He will assist Fibromyalgia & Fatigue Centers, Inc. to expand upon their cutting-edge therapies ensuring that patients continue to experience sustained positive clinical outcomes. FFC's proven 6-Step Treatment Approach, together with Dr. Teitelbaum's research and training expertise will ensure continued growth of FFC's core clinical model and bring unsurpassed quality patient care to their patients. https://endfatigue.com and http://www.fibroandfatigue.com/management_team.php."
 
 
 
11. DR. CHENEY & OXYGEN
From a reader--
"I just got the new DVD's of Dr Cheney Do you know what he says that makes so much sense? Because CFS patients have a low oxygen level (usually a small hole in the heart) we actually grow Candida, Lyme and one other thing in our bodies not because we were infected by these but because these 3 things can grow with little oxygen levels in a lab and the same in our body.  He said if something was done and we started to feel better quickly it could kill us. CFS needs to be a slow adapting process.  So if we were given oxygen and we felt better so quickly it could kill us.  About all of us having Lyme...according to this, that is correct -- not because we contracted it, because it can grow without oxygen.  I am sending this to a friend whose mother was just placed on oxygen and she feels energized.  This doctor is unreal.
A friend sent me 2 DVD's all on Cheney and his research--
the 2006 set of DVDs.
I am 100% sure this Dr is the only one who understands what is going on with us."
 
 
12.  FIBROMYALGIA AWARENESS DAY - MAY 12
From Marly Silverman of PANDORA--
"Can you please tell folks about our awareness events
in Florida. 
http://www.pandoranet.info/awarenessevents.html and our
international advocacy video contest ends on April 30, 2007 - By May 12,  we
will know who the winners are
http://www.pandoranet.info/advocacyvideocontest.html.  Folks can vote after
watching the videos which are now posted on our web site. I am curious to
know which one is your favorite...Don't forget to vote."
 
 
13. FIBROMYALGIA WELCOME PACKAGE
From Brenda Lee--
Exciting News
After 10 years with Micki and Rose
sharing their wonderful and informative
Fibromyalgia Welcome Packages 3 part
emails with so many fellow fibromites...
It is finally online now!!!

We have all shared these Fibro Welcome
Packages with newbies that
came into the support groups and
chat rooms as well as with
each other by emailing the 3 parts
to people wanting it...

Now all we have to do is share the
NEW Website
with Newbie, Fellow Fibromites,
Family, and Friends.

What a blessing Huh!

Hope, Caring, Sharing, Guidance
Thanks to Micki and Rose keeping it going
all these years; what a blessing they have
been to many of us that were newbies
searching for help and answers. 

We are so blessed now to have many
websites about Fibromyalgia. Just
4 years ago it was not such an easy
thing to find and read about Fibromyalgia.

To me this is very exciting, and
hope it is for you as well.
Love and Peace to you all, enjoy!
Here are the links... pass them on to
others and Newbies Dx with Fibromyalgia.
http://www.fibrowelcomepackage.com
Fibromyalgia Welcome Package Introduction
 
 
14. WILSON'S SYNDROME (THYROID & FMS)
[revisited from numerous past newsletters - search for topic at www.fms-help.com/newsletters.htm]
From a reader--
 "It is a well known and established fact that those who suffer w/fibro also suffer from adrenal hormone deficiencies.  It affects the hypothalamus which affects sleep, ability to withstand heat or cold, body temp, and numerous other body functions.  There are natural foods that you can get this from but not usually in the amount that is required by us who are afflicted with this debilitating disorder...say it...DISEASE!   A substance called:  DHEA/Pregnenolone 90 cap. is supposed to help - (especially women - the DHEA portion).  I've ordered it online after having a friend who has FMS/CFS and had her doctor give her injections which diminished her pain (not totally but substantially).  Couldn't hurt to try, eh?  Better than having to stay on opiates the rest of my life!"

15.  FIBRO FOG TIP
From a reader--
"For those who love to read but find it hard to "remember" where they left off, try this method:
  Take an old deposit slip or something which has writing on one side (clearly visible) and is plain on the back side and use it as a bookmark.  Now the trick is this:  use the printed side to show which side you were last reading - lay it against that "active" side.  AND, also place an arrow at the top pointing up IF you had stopped reading in the upper half of the page...turn the slip around and place an arrow at this now top pointing down to indicate that you were reading the page below 1/2 way.  In this manner, you won't have to look and look for that place where you stopped nearly as hard and won't have to re-read so much to get there!  For those of us with fibro "fog" I find this method works well and can enjoy reading again."
 
 
16. DOCTOR'S VISIT TIP
From a reader--
"I despise having to constantly fill out all those doctor forms...especially the area about current meds.  So, I took the labels off the bottles (making labels for them if I didn't know the pills and what the dose is, etc and taped these onto the bottle) and put them onto a sheet of plain typing paper, one after the other.  Now, when I see the doc, I hand this to him/her for copying for their files.  ALL info is there...which doc wrote for what, what the dose is, current date of med, how many were purchased, how many refills...EVERYTHING they need to know.  On the back side (if I've not used it up), I place the labels from my supplements such as garlic, celery, calcium, etc. so they know what might interact with any other new med they may think of.  My doc hugged me (lightly, of course) and told me to write something up for others to use as a guideline for seeing other docs as my method she just thought was marvelous."
 
 
17.  NO MORE SUPPLEMENTS?
Reader 1--
"There's a very scary legislation that the US government is trying to pass, and it needs your voice before April 30thIf this bill passes, the FDA will reclassify all vitamins, supplements, herbs, essential oils and more into FDA regulated drugs. This would mean that any non physician who uses them will be declared to be practicing medicine without a license. Herbal healing has been around thousands of years!!!! The FDA is very recent, and yet it is attempting to control our choices in the name of greed and money.   The document is called Docket No. 2006D-0480. Draft Guidance for Industry on Complementary and Alternative Medicine Products and Their Regulation by the Food and Drug Administration.  Click here for the direct link to the FDA's comment posting page for this docket. http://www.accessdata.fda.gov:80/scripts/oc/dockets/comments/COMMENTSMain.CFM?EC_DOCUMENT_ID=1451&SUBTYP=CONTINUE&CID=&AGENCY=FDA
This move by the FDA is designed to once and for all destroy the 1994 DSHEA law that has made supplements "legal" while eliminating nutritional supplements and natural medicine from the United States, ensuring monopoly profits and control by drug companies and the FDA. It is the latest action item by the FDA / Big Pharma conspiracy that will not stop until health freedom has been abolished, drug companies rule the nation, and every citizen is diagnosied with a fictitious disease and drugged up on monopoly-priced pharmaceuticals.  After you sign that, please go to this link and add your name, thank you! Please pass this letter to everyone you know.
http://www.democracyinaction.org/dia/organizationsORG/healthfreedomusa/campaign.jsp?campaign_KEY=7185"
 
Reader 2--
"I am not sure if you our your readership is aware of this but what is
coming down the pipe for Americans is extremely scary and dire for
anyone that relies on alternative health care (usage of vitamins and
minerals and other types of herbal or medicinal products). Please
check out this link and it will explain better than I what is going on
now. We need to rally to protect our rights to the natural health
products that we so desperately rely on!
http://www.citizens.org/taxonomy/term/17?message=Successfully+sent+messages+to%3Acyndymccallus%40aol.com%3CBR%3Edom%40fms-help.com%3CBR%3Edominiebush%40bellsouth.net%3CBR%3Edbush2004%40bellsouth.net%3CBR%3E"

 
18. FIBROMYALGIA ON OPRAH
Article on about.com from a reader--
"There have been multiple letter-writing campaigns to Oprah over the past
10+ years, urging her to do a program about fibromyalgia. Although she
has not yet done the TV program, FM has made it to her website. In
observance of National Pain Awareness Month (September), Oprah.com is
featuring an article on fibromyalgia by Dr. Margaret Caudill-Slosberg
http://www.oprah.com/health/soh/soh_sept_fibro.jhtml. (Also, if you
haven’t seen it yet, the September 2006 issue of /Oprah/ magazine
features an article about living with chronic fatigue syndrome.)"
http://chronicfatigue.wpadmin.about.com/?comments_popup=255937',400,550
http://chronicfatigue.about.com/gi/pages/shareurl.htm?PG=chronicfatigue.about.com/b/a/255937.htm&zItl=Fibromyalgia%20on%20Oprah.com
 
19.  STOP MEAT & MILK FROM CLONED ANIMALS
From a reader--
http://www.democracyinaction.org:80/Citizens/campaign.jsp?campaign_KEY=5938&t=
[This can't be a good thing for our health!]
 
 
20. CHIROPRACTIC FRAUD
[This article has been removed.] 
 
 
21.  DOM'S PERSONAL UPDATE
Well, as we all know, FMS/CFIDS is an up and down illness - good one day, bad the next, next, next.   I just saw my picture taken at our School of Music recital Saturday.  I looked fine!  In actuality, I was so weak and sick I could barely lift the corners of my mouth to form a smile.  And by the end of the recital, when more pictures were taken, the muscles in my face were actually trembling when I tried so hard to smile.  I had to appear "chipper" because this was the "big event" for our school. 
 
This illness just doesn't show on the outside - no wonder people don't understand!  Of course, at home I let my hair down....that's just an expression since I have short hair....haha....but only my husband sees the crashed side of me.  The day of the recital I was glassy-eyed with fever.  I had a raging sore throat for several days previously and lost my voice completely that morning!  Another teacher had to introduce my students.  I am very thankful the recital went smoothly -- it was a wonderful event, but it was very hard to not speak even one word to my students, their families and guests - even during the reception following.  Ugh!  I honestly don't know where this current virus/infection came from!  Maybe stress from preparing students for this event?  Maybe from being around sick students earlier in the week?  Who knows!!  
 
Ever since I worked in a moldy building in 2005 www.fms-help.com/mold.htm, I've had a weakness in my lungs and it is baaaack!  Fortunately, a "croaky" voice returned Monday, so I was able to communicate with humans again--and even some frogs....ha!   I shudder to think what if I couldn't have made it to the recital at all, since I played duets with many students and also accompanied some vocalists.  Eeek!  After this scare, I've decided to go back on 2 scoops daily of the immune powder that served me well since 2001.  I am planning to cut waaaay back on herbals, supplements, and all the other stuff I was taking as a guinea pig because someone said it helped them.  I think I'm confusing my immune system with good intentions! 
 
So I hope next week to update my (ever-changing) list of what I use at www.fms-help.com/what.htm.  I plan to continue taking 1 scoop of CSM (cholestyramine) daily for the mold problem, per Dr. Ritchie Shoemaker's protocol for people with chronic neurotoxin illnesses www.chronicneurotoxins.com.  (Actually, you are supposed to take 3-4 scoops of CSM daily, but the dosing schedule seems really hard to follow.)  I am thinking that between all the supplements and meds I am presently taking for all of my problems, that I may be making myself worse!  So I am only going to take what is absolutely necessary and see what happens.  (I mean, how much worse could it get?!) 
 
But at least I have been pain free for many years now after 14 years of misery (see www.fms-help.com/what.htm - scroll toward the end - look for red writing - to see what helped me pain).  The FMS/CFIDS symptoms I still struggle with are fatigue, lung weakness (from mold exposure) and the sleep disorder I've had for 40 years.  BTW, Lunesta is working fairly well this past week!   I stopped Ambien after 10 years because of eating binges and amnesia.  Maybe it was building up in my system.
 
 
22. HOW MANY STRINGS DO YOU HAVE LEFT?
I received this wonderful story from a reader and thought that after reading this newsletter, we could all use a little inspiration!--
"On Nov. 18, 1995, Itzhak Perlman, the violinist, came on stage to give a concert at Avery Fisher Hall at LincolnCenterin New York City. If you have ever been to a Perlman concert, you know that getting on stage is no small achievement for him. He was stricken with polio as a child, and so he has braces on both legs and walks with the aid of two crutches. To see him walk across the stage one step at a time, painfully and slowly, is an awesome sight. He walks painfully, yet majestically, until he reaches his chair. Then he sits down, slowly, puts his crutches on the floor, undoes the clasps on his legs, tucks one foot back and extends the other foot forward. Then he bends down and picks up the violin, puts it under his chin, nods to the conductor and proceeds to play. By now, the audience is used to this ritual. They sit quietly while he makes his way across the stage to his chair. They remain reverently silent while he undoes the clasps on his legs. They wait until he is ready to play.

But this time, something went wrong. Just as he finished the first few bars, one of the strings on his violin broke. You could hear it snap - it went off like gunfire across the room. There was no mistaking what that sound meant. There was no mistaking what he had to do. We figured that he would have to get up, put on the clasps again, pick up the crutches and limp his way off stage - to either find another violin or else find another string for this one. But he didn't. Instead, he waited a moment, closed his eyes and then signaled the conductor to begin again. The orchestra began, and he played from where he had left off. And he played with such passion and such power and such purity as they had never heard before.

Of course, anyone knows that it is impossible to play a symphonic work with just three strings. I know that, and you know that, but that night Itzhak Perlman refused to know that. You could see him modulating, changing, re-composing the piece in his head. At one point, it sounded like he was de-tuning the strings to get new sounds from them that they had never made before. When he finished, there was an awesome silence in the room. And then people rose and cheered. There was an extraordinary outburst of applause from every corner of the auditorium. We were all on our feet, screaming and cheering, doing everything we could to show how much we appreciated what he had done.

He smiled, wiped the sweat from this brow, raised his bow to quiet us, and then he said - not boastfully, but in a quiet, pensive, reverent tone - "You know, sometimes it is the artist's task to find out how much music you can still make with what you have left."

What a powerful line that is. It has stayed in my mind ever since I heard it. And who knows? Perhaps that is the definition of life - not just for artists but for all of us. Here is a man who has prepared all his life to make music on a violin of four strings, who, all of a sudden, in the middle of a concert, finds himself with only three strings; so he makes music with three strings, and the music he made that night with just three strings was more beautiful, more sacred, more memorable, than any that he had ever made before, when he had four strings.

So, perhaps our task in this shaky, fast-changing, bewildering world in which we live is to make music, at first with all that we have, and then, when that is no longer possible, to make music with what we have left."
[Like many people of middle age, I have experienced various tragedies and watched life unravel string by string. Yet this story is true! There is still music to be played on what is left! Life is not over until it's over. We still have music to play for God and each other. It may not be the music we used to play, but there are new meaningful melodies. We are still in the orchestra of life, making a difference!]
 
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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.