DOM'S NEWSLETTER
www.fms-help.com

SEPTEMBER 25, 2007

 A compassionate informative newsletter for people with Fibromyalgia (FMS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (M.E.)

TOPICS ARE IN PURPLE.  MY COMMENTS ARE IN TEAL.
 
Don't miss:
#3 SICKO - health care is not free
#8 GET OVER IT - so says this fibro doc
#11 ANY SUGGESTIONS? - reader desperate
#19 STOMACH VIRUS CAUSES CFS? - new research
#23 DOM'S UPDATE - enjoying life!


1. READERS WRITE

"Thanks so much for your newletter and website! They are very informative and full of wonderful information."

"Please keep up your wonderful work.  I know I look forward to your newsletter. It shows me that I am not alone, and there are so many wonderful people out there suffering with FMS.  You give us hope.  Thank you so much for that."

"I have learned a lot from your website as a fibro newbie."

"Just wanted to say, because I don't think I have before, how much I love your site. Reading other people's words that could have been written by me gives me comfort. I am not as alone as I feel."

"Great website!"

"I have been looking at your tips www.fms-help.com/tips.htm and have decided to try a number of them out and see if they help me!"

"I just ran across your page www.fms-help.com and I absolutely love it!"

"Thanks again, Dom, for such a wonderful and informative newsletter."

 

2.  PROBIOTICS, SUGAR, YEAST & BACTERIA
http://www.mercola.com/2006/jul/20/the_one_item_you_must_bring_when_traveling_especially_internationally.htm
Excerpt: Most people have no idea that the number of bacteria in your gut outnumber the cells in your body by about 10 to one and you have about 100 trillion bacteria in your colon. Many experts believe one of the major mechanisms of disease is related to the bacteria growing in your intestine.  This is one of the reasons why sugar really devastates your health. Not only does it disrupt your insulin and leptin levels but it is an incredible fertilizer for growing bad bacteria and yeast in your gut. It does far more than cause yeast and Candida to grow, the anaerobic bacteria it supports are probably even more dangerous than the yeast. When you eat a healthy diet that is low in sugars and processed foods one of the major benefits it produces is that it causes the good bacteria in your gut to flourish and build up a major defense against the bad bacteria getting a foothold on your health.  A high-quality probiotic is the one thing I take myself and advise all my patients, family and friends to take with them when they travel overseas. Although this recent study cited above only partly bears this out, I suspect there are reasons for this discrepancy. For one, there are many brands on the market, but many of them contain insufficient quantities of bacteria. In fact, a study a few years back found that one-third of the probiotics on the market were worthless and did not have the bacteria they claimed in the bottle Additionally, when treating acute infectious diarrhea, large therapeutic doses are required (typically an entire bottle over a day's time or about an eighth of a bottle every hour until the problem is resolved). Most often, the symptoms will subside within four hours.  Using a probiotic is one of the most amazingly consistent approaches to managing travelers' diarrhea I have ever seen. In addition to a lot of lousy products on the market, there are many good ones.
 
 
3.  SICKO
From a friend--
http://www.capmag.com/article.asp?ID=5011 - "Single-Payer" Health Care Is Anything But Free - by Paul S. Hsieh, MD  (September 17, 2007)  - Excerpt:  "Michael Moore's latest movie "SiCKO" sings the praises of the Canadian "single-payer" socialized medical system. Some Americans want a similar system implemented in the United States.  Defenders of the Canadian system frequently claim that patients don't have to worry about money when they're sick--the health care is free.  But is this really true? No. First, it is ludicrous to think the system is free. Each citizen is forced to pay for his neighbors' medical care in the form of high taxes. (As a percentage of GDP, total taxation is 28 percent higher in Canada than in the United States.) The government, rather than individuals, then decides how that money is spent."
 

4. URIC ACID, M.S. & GOUT
From a reader--
"I was reading your newsletter www.fms-help.com/091807.htm and something grabbed my attention. I recently had a CBC (Blood Work) and discovered something pretty interesting. I tested very low for Uric Acid @ 2.2 (Reference Range) 2.4-8.2. I realized that this had not been tested since 1996 and when I looked at THAT test saw that it was 2.0 even back then and my doctor said NOTHING! The reason this is critical is that when I started doing searches on the Internet such as (“low uric acid” causes) I found a definitive connection between LOW URIC ACID and MS (Multiple Sclerosis). The majority of MS patients have very low uric acid and when it is raised by either specific drugs (which have side effects) or Inosine, available over the counter, (which is now in phase 2 of clinical trials) patients see remission or stability of their condition. Molybdenum, also available over the counter, raises Uric Acid as well.  HIGH URIC ACID can and does cause Gout and even more interesting is that almost without exception Gout patients NEVER get MS and MS patients NEVER get Gout. And the connection? Uric acid levels. I’ve been battling with neurological symptoms for over a decade that are similar but not exactly like MS, Fibro and also Adrenal Insufficiency as well so for me this is big revelation. I would encourage the reader who was concerned about MS to have her levels of Uric Acid tested as it may provide a clue."
 
 
5. GUAIFENESIN & BLOOD PRESSURE
From a reader--
"I just have a comment to make about this treatment. A friend of mine that also has Fibro told me about this product. I tried it especially for my back pain. It caused alot of coughing up mucus for the first couple of weeks or so; but was well worth it for several months. Then I started feeling really weird and decided to check my blood pressure. It was 175/115. Very high. My blood pressure had always been normal. After this I stopped taking this product and my BP is back to normal. However so is the back pain. But I can live with  pain better than risking a heart attack or stroke from the high BP. Just thought I would tell you my story on this. People really need to keep a close eye on their BP if they decide to try this."  
 
 
6.  METABOLISM
Please respond directly to Jo jodavidson@mac.com--
"Does anyone have any idea how to speed up metabolism? After years of this illness I suddenly now have a slow metabolism. Has anyone had any experience with a product called Fucothin that is being promoted by Jordan Rubin?"
 
 
7. FIBRO HEREDITARY?
From a reader--
"I have been thinking for years that Fibromyalgia is hereditary or at least a predisposition to it.  You see, I am 60 years old and have suffered with FMS for about 20 years now...long story..however, I remember my mother had problems and thinking about this, her problems were identical to what we suffer with the FMS.  Of course, nothing was known about FMS at that time.  I have two sisters.  I am the oldest, and both of my sisters have FMS among other things.  Now my nieces are in  their 30's, and they are both showing signs of the FMS...strange, isn't it?  To me it shows there is some kind of link here."
 
 
8.  "GET OVER IT," SAYS FIBRO DOC SCHERGER
From a reader--
"Doctors like Scherger www.fms-help.com/091807.htm, which I've had the misfortune of going to in the past, give new meaning to "Hypocratic Oath". They are hypocrites! As someone who tried not once, not twice, but three times, at least, to "get over it", I know for a fact that pretending it doesn't exist is not the way to improve. In fact, each time I attempted to "wish it away", "will it away", "pretend" it away in order to just "get over it", I developed new symptoms and worsened the ones I already have. Proceeding as if one does not have this, and pushing oneself to live what I refer to as a "normal life", working at least 40 hours a week, commuting, taking care of a household, etc., does not make this better. If it did, I would be cured! I wish doctors like this would have been able to come live with me during those times that I tried to "get over it" and see what the results were (frequent hospitalizations, nearly dying). Doctors I had been seeing at the time could not believe how much worse I got trying to "get over it" and one even dismissed me as a patient because he was so angry that I had not followed his advice to not go back to work and not push myself. I can't wait to see this doctor, as he ages, develop health problems so we can write him and tell him to just "get over it". With our luck, he'll drop dead of a sudden heart attack, leaving us without the satisfaction of uttering these words to him."
 
 
9.  SLEEP STUDY COMMENTS
Continued from www.fms-help.com/091807.htm
From a reader--
"I had two sleep studies done and was allowed to take my meds with both of them.  Even with the ambien and soma I slept only 3 1/2 hours the first time and 5 hours the second time.  They told me I got no deep sleep and had over 50 arousals of alpha waves into delta waves.  My sleep doctor thinks I do have upper airway resistance syndrome and they just don't know how to diagnose it.  He tried to get my insurance to cover a trial period with a CPAP machine to see if it improved my sleep, but they refused.  I would have to use the nasal pillows as I am severely claustrophobic and could not handle a mask on my face.  Even when I have surgery they have to lay the mask by my nose till I go to sleep or I go into a panic attack.  I do know that I get much better sleep at home most of the time than I did at the clinic, but some nights I still sleep poorly.  Using a lightbox every morning for half an hour helps me get to sleep at a decent hour, but I still wake up early and cannot get back to sleep.  I take ambien 10 mg and soma 4 nights a week and 1.5 mg of klonopin along with an over the counter sleeping pill the other 3 plus melatonin nightly.  I have found that the generic for ambien just does not work well for me and my pharmacist said if they just gave me the name brand it would cost me a $65 dollar copay, but if my doctor calls it in that I need the name brand then my copay is $39 which is $20 more than the generic but so worth it.  So my next refill I will have Dr. Pellegrino call in the name brand.  I want to see if it is truly the generic causing me problems or if I am just going through a rough patch in my sleep.  Right now I am sleeping a little better due I think to having surgery this past Wednesday to remove a melanoma from my leg.  The anesthetic makes me sleepy for a week or so which has been a blessing."
 
 
 
10.  ANTIDEPRESSANTS & WEIGHT GAIN
From a reader--
"As for antidepressants for sleep, it took huge amounts of elavil to get me to sleep and I gained a huge amount of weight in a short period of time plus was totally hung over the next day.  I had the same problems with trazadone.  I now refuse to take antidepressants as for me the side effects are much worse than the problem being treated!"
 
 
 
11. ANY SUGGESTIONS?
Please write Blair directly at ZazuFl8@aol.com--
"I have been getting your newsletter for about a year. I am soon going to be homeless, I can't work, can't get disability since I don't have enough work credits and my alimony is ending. No help from legal aid and can't find an attorney to do this pro bono. In addition I have spinal Stenosis and degenerative disc disease in addition to A lung disease. I am so depressed and worried. There seems to be no help.  Prayers are needed. - Blair"
 
 
12. CALCIUM & MAGNESIUM MAKE READER FOGGY
From a reader--
"I am one of your devoted readers and am so grateful for all that you do.  You are amazing!  Although I try to make intelligent choices (after all, I am a UCLA alum like you) I discovered that I was doing something helpful that was causing another problem.   In addition to the usual FM pain, I have been struggling with debilitating fatigue and brain fog.  I still work full time as a CPA and was getting very concerned about the ability to do my job.   I have dutifully been taking Calcium / Magnesium supplements three times a day to prevent osteoporosis.  In a light bulb moment, it occurred to me that perhaps the Calcium / Magnesium (I know sometime used to help people sleep) was making me sleepy and foggy.  Guess what?  I switched my Cal/Mag supplements to bedtime only and I am much more alert and feel so much better.  I can't believe I did this to myself!  I just thought I would pass this information on to you in case any of your readers are making the same mistake I made.  I ordered your vitamin mineral supplements but still felt tired and foggy after taking them.  Now I know why!  Can't wait to see the difference."
 
 
13.  CFS PAGE FOR DOCTORS!
From a reader--
http://www.cfs-news.org/doctors.htm
Most of us have to educate our doctors about FMS/CFIDS/ME!  This article and others (print them out and take the articles to your doctor) can help.  Some doc think they know it all and don't welcome input from patients, but the best docs are open to new information.  Personally, I will not return to a doctor who doesn't understand (or care about) my condition or be willing to learn.  When you think that most doctors are scheduled to see 6 patients per hour, there isn't much time for chit-chat during your appointment.  Leaving him/her some printed information to read might help.  Or send the information ahead of time before your appointment.  Just remember that doctors can't work miracles with this illness.  They can prescribe drugs that may or may not relieve some symptoms (usually the side effects are so negative that they offset any positive).  I have a list of things I'm using now at www.fms-help.com/what.htm - I have had my life and functionality back since June 5, 2007!  Thank God!
 
 
 
14.   DOES YOUR ANTI-PERSPIRANT CAUSE CANCER?
http://articles.mercola.com/sites/articles/archive/2007/09/20/does-your-antiperspirant-cause-breast-cancer.aspx
 
 
 
15.  THE MORE YOU SLEEP THE LONGER YOU LIVE??
http://articles.mercola.com/sites/articles/archive/2007/09/20/the-more-you-sleep-the-longer-you-live.aspx
I wonder if anyone has done a mortality study on FMS/CFIDS/ME patients?  Do we insomniacs live a normal life span or do we die sooner?  If you have any research on this, I would greatly appreciate it.  Write dombush@bellsouth.net  My insomnia story is at www.fms-help.com/insomnia.htm.  A list of things I've tried for sleep is at www.fms-help.com/sleep.htm.
 
 
16.  VITAMIN D DEFICIENCY & FIBROMYALGIA
From a reader--
http://www.knowledgeofhealth.com/pdfs/fibromyalgia.pdf
 
 
17.  MISINFORMATION WARNING
From a reader--
"While I realize that comments in your newsletter come from readers and not from physicians, I am concerned about much misinformation that is being spread among readers who do not differentiate between fibro symptoms and concomitant symptoms of other disorders, such as depression, arthritis, etc.  I have several disorders that can interact with fibromyalgia: depression, PTSD, GERD, IBS, TMD, asthma and osteoarthritis.  It is very important to realize that while these disorders may impact each other, they are separate disorders, and one must consider the consequences/symptoms of these disorders separately.  I am very concerned that many people attribute or relate practically every symptom they have to fibromyalgia, which among other things, can result in their not getting appropriate treatment for those disorders. I would like to see you remind your readers of this on a regular basis."
 
 
18.  BURNING SENSATION
From a reader--
"I don't get an all over burning, but certain foods can trigger a form of neuralgia in my shoulders and arms, and my skin becomes so sensitive that a simple touch triggers the burning. Sensitivity to any kind of airborne pollutant, but especially scented junk like air fresheners, fabric softeners, shampoos, detergents, perfumes, colognes, body washes, etc. can start it up, also for me they can trigger instant migraines, nausea and vomiting, brain fog, intense drowsiness or even asthma symptoms. Start with simple things, test them out one at a time til you find your triggers, then avoid them if you can.  The sleep disorder is the key for me, once I had it under control the other stuff is better,except for the airborne junk which still remains a problem."
Interesting.  Restorative sleep helps the immune system heal your body.  Allergies and chemical sensitivities are indicators of a malfunctioning immune system (probably a revved up one).  Those of us with chronic insomnia know that everything goes downhill when we are sleep-deprived.  You can read my insomnia story at www.fms-help.com/insomnia.htm and a list of things I've tried for sleep at www.fms-help.com/sleep.htm."
 
 
19.  STOMACH VIRUS CAUSES CFS?
Article from readers--
"Chronic Fatigue Syndrome is associated with chronic enterovirus infection of the stomach - Source: Journal of Clinical Pathology, online Sep 13, 2007 - by John K S Chia and Andrew Y Chia - ImmuneSupport.com" http://www.immunesupport.com/library/showarticle.cfm/id/8325/searchtext/enterovirus/

Also, see this article about reactivation of viruses causing frequent cold sores: www.immunesupport.com/library/showarticle.cfm/id/8344/searchtext/enterovirus
"Various viruses have been shown to play a triggering or perpetuating role, or both, in this complex disease. Microbes which have been shown to trigger CFS/ME include enteroviruses, Epstein-Barr virus, Chlamydia pneumoniae, parvovirus B19, Coxiella burnetii, Borna disease virus, Varicella Zoster virus, cytomegalovirus, and human herpesvirus type 6 (HHV-6). Chronic microbial infections which have been documented in CFS/ME patients include Coxiella burnetii, parvovirus B19, Chlamydia pneumoniae, hepatitis C, enteroviruses and human retroviruses. Virus reactivations in CFS/ME include Varicella-Zoster virus, Herpes Simplex virus (HSV) (increased frequency of cold sores) and EBV."


20.  MUSCLE TIGHTNESS
Please respond directly to Shirley at prywarr@yahoo.com--
"I have been doing some studying on Vitamin D and have learned so much.  My dr. just put me on 5,000 i.u. of vitamin D to see if it will raise my levels since they have been so low (29 was the latest and the highest I've been).  I will give you an update when I am retested to see what the difference is.  I am so thankful  to hear that it is common with fibro.  I never knew that before.  I have been trying to get out every day and walking.  That puts me in the sun at least 10 to 15 minutes.  Don't know yet if it helps.  I will probably get tested again next month but don't know yet.  Could  you ask your readers if they experience tight thigh muscles.  They have been miserable for a few months now.  This is something new for me. - Shirley"


21.  STRESS & FIBRO
From a reader--
"I read with fascination the article you included in your newsletter of Sep 18 www.fms-help.com/091807.htm about the hippocampus.  I think there may be a lot of truth to this.  No one talks about it, but I bet 99% of people with fibro have experienced severe or long lasting stress in their lives.  I know I have, due to relationships, upbringing, etc.  Maybe fibro is like Diabetes II - you stop producing enough insulin, just stop, and develop diabetes.  Maybe with chronic stress you just convert all your dopamine to ephinephrine or norephinephrine (stress hormones) and are constantly under stress, which you learn to live with, and can no longer turn this pathway off.  But when you go to sleep you do not get a restful sleep because you do not get rid of "waste products" from your cells and these build up over a long time.  I've attached an interesting theory of sleep which made sense to me.   I have been trying to "get rid of toxins" lately by taking wheatgrass.  (It's supposed to do that.)  First thing that happened to me was that I could not stay awake when I took it.  Have to take it at bedtime as it absolutely exhausts me.  If I take too much (for me that's 7 pills and the max is 20) I get terribly depressed and anxious, so I can only stand 4.  I just wonder if, because of being constantly stressed, that causes us to be unable to get a rejuvenating sleep which prevents our bodies from cleansing and getting refreshed.  How many people with fibro also have sleep apnea?  There seem to be very many from your articles on apnea tests.  Adenisone is a chemical that is connected to falling asleep.  If that is blocked we cannot sleep.  Stress hormones would block that.  Evidently adenisone increases the longer we are awake and when it is high enough we will sleep.  If this is blocked by low constant levels of stress hormones we cannot sleep properly.  Scientists are looking at the role of adenisone in sleep apnea.  I really think that the key to this is restful sleep and what is preventing it - over production of stress hormones."

 
22.  NAC (ANTIOXIDANT) DANGEROUS
 
 
23.  DOM'S UPDATE
I've been feeling good since June 5, 2007!   What a relief to not be suffering and struggling through every day!   I had forgotten what it was like to be a normal person.  I am able to travel, work and keep up with my responsibilities.  Life is a JOY once again! 
 
I still don't do mornings, but fortunately I have a job (teaching music www.fms-help.com/students.htm) where I can schedule my students in the afternoon and evenings.  I also serve as administrator for the school now.
 
 I have tried soooo many things since 1982 to help the numerous debilitating aspects of FMS/CFIDS - see my personal story at www.fms-help.com/fibro.htm.  I finally have a regimen that works for me - a list of things I'm using and doing are at www.fms-help.com/what.htm.  Different things work for different people.  There's no "magic bullet" or "one size fits all" solution.   It takes a lot of experimentation to find things that help - I have felt like a guinea pig for the past 25 years! 
 
Many of the things on my list www.fms-help.com/what.htm have a 30 day money back guarantee, so that is always good!  Too bad docs and pharmacies don't refund your money if their treatments and drugs don't help ypu.  We've all had a "cashectomy" over the years looking for things to relieve our misery.
 
My longtime readers know how awful my health has been.   I am amazed to be enjoying my life and work again!   I would have never believed it, because It has been many years since I felt any enjoyment in life!   I have no pain, fatigue or fog to slow me down now.  Wow!  It all started in May when my church earnestly prayed for me.  Then my husband enouraged me to try the things I am now using.  That was on June 5 and the rest is history....ha!    (See my newsletters from June, July and August 2007 at www.fms-help.com/newsletters.htm - there's a "Dom's Update" at the end of each issue.)
 
It has been almost 4 months now and my life has changed dramatically.  Even my husband is not nervous anymore that I am going to relapse.  He carried such a heavy load for so many years because I was barely able to function - I was near collapse most of the time.  But my brain is finally getting oxygen now, and I have things that help me combat stress and give me sustained energy and stamina.  Life is good!!!
 
Now if only I could get rid of this (40 year long) sleep disorder www.fms-help.com/insomnia.htm.  However, once your sleep clock breaks (mine broke at age 16), it seems permanent.   I'm thankful to have sleep meds and other things that help me www.fms-help.com/sleep.htm.  In the past I have gone as long as 5 days without sleep.  Many years I slept just 1-3 hours per night and had to get up and go to work the next morning.  It just tears your body down!  Sleep deprivation is actually a form of torture used in POW camps!  Thank God for sleep meds - they are merciful, but you have to find the right ones for your system.  (It's not like "real" sleep, but I'm grateful for any "knock out" time!)
 
In further complaining, I continue to have a chest tightness and a cough at times - this is from working in toxic mold in 2005 www.fms-help.com/mold.htm.  Sometimes it almost leaves, but it always comes back.  I think I'm just stuck with it.  At least I don't have the debilitating fatigue, fog, and sensitivity to light and noise anymore.  Just the other day, my husband and I were in Best Buy - a store I always avoided because of the noise (which was torturous to my delicate nervous system) and the overwhelming visual distractions.  Well, this past weekend, I had no trouble shopping there!  The sights and sounds that used to drive me out of the store had no effect on me.  I was like a normal person!!!  Yay!!!!
 
For my newsletter newbies, I just want to mention that my homepage www.fms-help.com has  MUCH GREAT INFORMATION for people with FMS/CFIDS/M.E. - look in the yellow box on the left for many intriguing and helpful articles!  You can also surf back issues of my newsletter at  www.fms-help.com/newsletters.htm.  Use the search box to find topics of interest related to FMS/CFIDS - meds, symptoms, supplements, etc.  There isn't much we haven't discussed in the newsletter, but new information becomes available daily, which is what keeps this newsletter going -- even after 11 years!  So stay tuned!  One of the best things about the newsletter is that we are not alone!  We have eachother!  I am so deeply grateful to my readers for the great advice and information they have sent me over the years.  The only people who understand this condition are those of us who have it.   I wish the docs could help us more, but often they aren't up to speed on this illness.  Even those who do "get it" aren't able to help much, except with meds, which can sometimes have terrible side effects....been there, done that.
 
I love hearing from readers, but would greatly appreciate if you could keep your emails as brief as possible, as I am overloaded.  Also, if you want to ask a question in the newsletter, please state your question or situation as succinctly as possible and check spelling and grammar - this will save me editing time.  Thanks so much!  If you want responses from other readers, I need your permission to use your first name and email address.  (Remember that this is an ONLINE newsletter, so anyone can read it once it is launched to the net.)  Anything sent to me without permission to use your name is always used ANONYMOUSLY, and I take out any personal information, so you are safe!
 
Have a blessed day!
 
Dominie
 
Closing thought-- 
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
 

 

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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.