Dom's FMS/CFIDS Newsletter
www.fms-help.com

November 12, 2008
 
A compassionate, informative newsletter for people with fibromyalgia (FMS), chronic fatigue & immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.)
 
21 topics below in PURPLE. Scroll down to see if any apply to you!   Readers comments are in BLACK.  My comments are in TEAL.
Don't miss the RED topics!
 


1.  READERS WRITE

 
"It is the grace of God that I ran across your page www.fms-help.com/fibro.htm.  Your story made me cry.  I've had fibro for 4 years and it has ruined my life, yet it has made me a more compassionate and caring person."
 
"I just want to THANK YOU for your passion in helping others with their challenges with this misunderstood condition.  I too have Fibro and Chronic Fatigue."
 
"I am just blessed that I found you."
 
"I'm so thankful that God has led me to you and so thankful for your generosity with your time. You have given me a hope that was diminishing.  I'm going to read everything you have posted.  You have provided me with plenty of information, that very well may help me recover."
 
"Thanks for your time and efforts in behalf of all the FMS/CFS sufferers."
 
"I stumbled onto your website www.fms-help.com this morning. After crying myself to sleep last night, I woke up  with a renewed energy to find a way to feel better."
 
"I've enjoyed reading your website filled with so much useful information."
 
"I love  love  love  your board! http://health.groups.yahoo.com/group/dominie"

 
 
2.   ANTIBIOTIC TREATMENT
 
From a reader--
 
"Just wanted to let you know that I'm doing well on the [chlamydia pneumoniae] treatment.  I am blogging it on the website. I'm keeping track of my progress so that people who want to go on this treatment can see what my journey has been like.  Here's my blog: http://cpnhelp.org/blog/gkirilova.  So far my sugar cravings have gone way down and I look forward to reporting more good news in the future."
 
 
3.  DR. DANTINI & ANTI-VIRAL TREATMENT
 
From a reader--
 
"I have suffered from FMS for five years (since 29 yrs of age).   I was unable to work these last five years, was bedridden nearly three, and was on phase three of the disability process.  My husband divorced me and my parents financially supported me.  My parents never lost hope and sent me for treatment all over the country.  My pain was so excruciating that last January I was on a Fentynal Pain patch usually administered to cancer patients, along with a myriad of other prescriptions.  At times I wished I was dead.  I say all this to clearly describe how miserable my existance was at the young age of 34.  Five months ago, by the grace of God and the recommendation of a dear friend, I was driven to Ormond Beach to see Dr. Dantini.  I had read his website and it made sense to me-his Protocol was different than any I've tried and, having FMS himself and successfully treating his own illness, Dr. Dantini understood the struggles that accompany this often brutal illness. 
 
Well, five months later, I am strictly following the Dantini Protocol- his manegement of the illness entails two KEY components-antiviral therapy (and that means management not a one time deal of viral treatment- I expect relapses, but now I know how to handle them) and latent food allergies (our immune systems have been in overdrive and overtaxed therefore our bodies recognize common foods as enemies and tax our system even more).  Dr. Dantini uses Sage laboratories for food testing-it is clinically backed and, for me, the most sensitive testing.  My results included 21 food intolerances.  To make a long story short, I feel better every week, not perfect, but good enough to exercise, sleep well, GO BACK TO WORK, have a healthy relationship, and raise a five year old!  I am still healing and it is tough not to overdo it now that I have spring in my step!  Most of you would understand.
I cannot stress enough the importance of the entire Dantini Protocol-this is a management program, not a cure.  Honestly, I know that I am infintely grateful to Dr. Dantini and his personal research.  He is one of us.  If you meet him, there is no doubt he understands what we deal with as a person with FMS/CFS.  Please, if you have the opportunity to be treated by Dr Dantini (he will work long distance with your doctor), please do.  He can give us the tools to manage our illness, it is up to the individual to make it happen.  He helped me and it is worth a shot for anyone.  His website is 4fibromyalgia.com.  Peace and love to my FaMily."
 
 
 
4.  ICE PACK
 
From a reader--
 
"I tried the ice pack on my neck/where the little brain is. It help to quiet my thoughts and helped me relax, it also helped with that nagging pain in my neck. I am familar with the brain because I have taken Anatomy/Physiology class. a few years ago when I brought up to my Dr. that there may be some kind of problem with my Hypothalamus or something else in the head, he scoffed at me."
 
I too use an ice pack at times on both the back of my neck and my forehead as I go to sleep (wrap ice pack in cloth).  It helps slow down my brain and nervous system and stops racing thoughts.  See www.fms-help.com/what.htm.
 
 
5.  POST-POLIO SYNDROME
 
From a reader--
 
"I had polio at age 6, 1953 before the vaccine came out.  Post polio syndrome victims have a higher incidence of fibromyalgia."
 
Search for articles about post polio syndrome (PPS) in my past newsletters at www.fms-help.com/newsletters.htm.
 
 
 
 
6.  DEPLIN (L-METHYLFOLATE) FOR DEPRESSION
 
Please respond directly to Susie pjneal4@comcast.net--
 
"Deplin which is from Pamlab LLC and is labeled a Medical Food  but what it is is L-Methylfolate.  It is normally used for people with depression but it affects alot of the neurotransmitters that are affected with fibro...so they tell me.  From what my dr told me, we already have folate in our bodies but the methylfolate sends it to the brain and though it is not a 'fibro' drug yet and is used for people with depression, and because I am being treated for depression along with fibro, my doc is hoping it is going to help with the fibro.
It is supposed to help those who cannot get 'over the hump' of getting rid of the depression with the medicine out there.  Also supposed to help with mental clarity and other things.  Wondered if anyone else has had any experience with it?  It takes about 3 weeks to get into the system but I would like to say I am having some positive effects.  There are supposed to be NO negative effects from this medicine. - Susie pjneal4@comcast.net"
 
 
7.  FLU SHOTS NOT STOPPING THE FLU
 
From a reader--
 
http://www.cbn.com/CBNnews/475564.aspx
http://www.cbn.com/CBNnews/328170.aspx
 
I never get a flu shot because my immune system is weak to begin with and I don't want to take a chance tampering with it.  I have been using an immune-balancer since 2001, and I have not had the flu during the past 7 years, although I did catch an upper respiratory virus a few times - once was due to working in toxic mold www.fms-help.com/mold.htm for a year.
 
 
8.  LDN and BLOOD PRESSURE
 
Please respond directly to Elaine epra01@verizon.net--
 
"I read in the newsletter www.fms-help.com/110108.htm a comment about
taking
Low Dose naltrexone and it caused her blood pressure to go up.
As you know, I too am taking the LDN and have good results.  I have
been on it since May.  I would really like to make a connection with
this writer to compare our problems. (I am not sure it is the LDN--
today I dropped my Allegra to see if that could be the problem). I am
currently being treated by a cardiologist for the high BP, she has
tried several different medications for the BP, and it is not coming
down.  Last night it was 166/111!  I have been on BP meds for 15
years and very slowly it has crept upwards, with the past few months
not responding to the meds. Yesterday I had a renal ultrasound to see
if there is a blockage, but the gal doing it said "wow, you have
wonderful arteries! so it doesn't sound like there is a problem
there. Sounds good for a 66+ years!  Could the person who posted in the last
newsletter please contact me? I would be so greatful. 
My email is epra01@verizon.net. - Elaine" 
 
 
 
9.  SALT CRAVING and ADRENAL FATIGUE
 
From a reader--
 
http://www.womentowomen.com/adrenalfatigue/adrenalglandnutrition.aspx - article is about adrenal function, cortisol, etc., but see the part about honoring your salt craving!
 
I always feel better when I have some salt and sugar in my diet.  Removing these substances drains me.
 
 
 
10.  "FROM FATIGUED TO FANTASTIC"
 
From a reader--
 
"Dr. Jacob Teitelbaum, Internal Medicine, specialist
FMS, CFS has a book "From Fatigued to Fantastic"  can get at any book store,
maybe even library,  it is paperback and has just about anything we need to
know, except for the new meds that are not out.  He is retired from seeing
patients now and is establishing clinics around the country, speaking
engagements, website "From Fatigued to Fantastic."  He is among the very
famous doctors who specialize in these illnesses, as you may know. He was my
doctor and now I see his assistant who is also an internal med. doc and has
helped with Dr. T's studies and now is treating patients, me included.
I wish everyone in the group could have a copy of this book.  It of course,
does not have all the new meds that are coming out."
 
 
 
11.  CHOLESTEROL MEDICATIONS MAY CAUSE FIBROMYALGIA
 
From a reader--
 
http://www.endfatigue.com/health_articles_c/Cholesterol-medications_may_cause_fibromyalgia.html
 
 

12.  VITAMIN E LEVELS LOW IN CFS
 
From a reader--
 
 http://www.endfatigue.com/health_articles_c/CFS_FM-vitamin_e_low_in_cfs_fm.html

This may explain why I became 95% pain free in 1996 (after 14 years of severe FMS pain) when I began taking a powerful antioxidant (20 times stronger than Vitamin E).  I remain virtually pain free, although I deal with fatigue caused by my 40 year long sleep disorder (which my doc is currently working valiantly to resolve).

 

 

13.  MASSAGE THERAPIST NEAR BOSTON

This massage therapist wants to help fibro patients--

Hi Dominie - My name is Wayne Jalbert. I am a Professional Licensed and National
Certified Massage Therapist with over six years experience working in
Boston's top Spas and Health Clubs. I have found that working in the
Spa environment most people are just looking for a "fluff and buff"
massage or a massage just because its the in thing to do. I became a
Massage Therapist because I wanted to work with athletes, tight
restrictive muscles, injury rehab, pain reduction, Fibromyalgia and
Chronic Myofascial Pain Syndrome. I want to work in an area of massage
where I can go home every night and feel like I have really helped
people. I am currently starting a practice in Beverly, Massachusetts.
Beverly is about 20 miles north of Boston on the North Shore of
Massachusetts. I was wondering if you have any suggestion on how I can
attract clients with Fibromyalgia and Chronic Myofascial Pain Syndrome
in my area.

Sincerely,

Wayne D. Jalbert, LMT, NCTMB
16 Lyman Street
Beverly, MA 01915
Phone: 978-273-9888
Email:
Bodyworkbywayne@aol.com

 

14.  BOTTLED WATER NOT SO PURE!

http://articles.mercola.com/sites/articles/archive/2008/11/08/bottled-water-not-so-pure.aspx

 

15.  "HIPPOCRATES SHADOW"

This book was called to my attention by a reader--

http://diabetesupdate.blogspot.com/2008/11/book-you-must-read-hippocrates-shadow.html

"The only thing wrong with Hippocrates' Shadow: Secrets from the House of Medicine by David H. Newman, M.D. is its title, because it gives you no idea what this insightful book is about. That means a lot of people are going to walk by it who really need to read it.

The title of the book should be Fixing Medicine. The author is an emergency room doctor, someone who has learned to evaluate, diagnose, and treat patients who are minutes from death. In this book, he brings the same swift insight he uses in the ER to sorting out in a mere 214 pages what's wrong with medical practice.

The titles of his chapters say it all: "We Don't Know" discusses the gap between the all-knowing image doctors present to patients and the huge number of conditions they neither understand nor know how to treat.

"It Doesn't Work" describes how doctors continue to use diagnostic techniques and treatments that research has shown to be worthless.

"We Don't Agree" discusses how even well trained doctors can look at the same test results, EKG, or X-ray and come out with completely different diagnoses.

"We Don't Talk" and "We Prefer Tests" are self-explanatory.

The most powerful chapters in the book are the three that come near the end. "We Won't Unlearn" is a devastating look at the way that false "Truths" (he calls them Axioms) become embedded in practice and how doctors cling to them without any idea of where they came from, long after they are discredited by research. We see this all the time with doctors who insist that low fat diets prevent heart disease or nutritionists who tell us that our brains will stop functioning on a low carb diet.

Dr. Newman shows that medical practice is riddled with many more deeply held beliefs that harm patients, beliefs based on findings published in Journals fifty or sixty years ago which have been handed on from doctor to doctor as truth though they were based on flimsy or even made up evidence.

The chapter, "We're Missing the Meaning" explores the concept of placebo and shows how powerful the attitude communicated by a doctor can be in helping or hindering healing. If you don't think that your doctor's (erroneous) belief that you caused your diabetes by being a lazy glutton is having an actual, negative impact on the way your body works, this chapter will change your mind.

Finally, the chapter, "You're a Number" discusses the way that statistics are manipulated to give patients false ideas of risk and benefit. If you read nothing else in this book, you should read this chapter.

In it Dr. Newman explains in simple terms a vital concept:"number needed to treat" (NNT). The NNT is a statistical measure of the actual number of people who will benefit from a drug or treatment. If the NNT is 2 it means that one out of every two people who use the treatment will benefit. This is a very different statistic from "risk" which as he explains is used to magnify an otherwise unimpressive statistical result.

To see the power of this statistic, consider that with statins, if you are not a middle aged male who has already had a heart attack, the NNT is 250. That means one person who takes a statin will not have a heart attack they'd otherwise have had for every 250 people who take it. The other 249 people or their insurers are paying a lot of money for a treatment that will do nothing for them and which may cause devastating side effects.

If you have any interest in understanding the way medicine is currently practiced, you should read the whole book. It will make you better understand why the care you get is so unsatisfying, and in addition it will make you realize that your doctor isn't much happier than you are at having to practice in the current environment.

As I read through this book, I kept wishing that there was some way that well meaning physicians like Dr. Newman could connect with concerned, activist patients like the readers of this blog so we could work together to fix the medical system together. Will that happen? Probably not, but we can always dream."

 
 
 
16.  THE HEART and CHRONIC FATIGUE SYNDROME
 
If you didn't get the super-long medical article I sent out a few days ago called "researchers discover NEW CLUES about CFS/ME!" - write dombush@bellsouth.net and request it.  It is too long to print here.  Contains fascinating new info from CFS researchers in many countries.  Finally, clues about the CFS mystery are coming to light!  The article also talks about post-viral syndrome and why "graded exercise" can be harmful, if not fatal, to patients with CFS/ME!
 
 
17.  UPPER CERVICAL CHIROPRACTIC
 
From a reader--
 
"Montel Williams had this done and I recently found someone not far from me that is a chiropractor that also works only on the neck and it is called the Upper Cervical Technique or different other names. I must admit that I AM A HIGHLY SKEPTICAL PERSON:>) but after studying on this and seeing it on Good Morning America, etc. for a study for High Blood Pressure I thought I had to give it a try. I found out some info. on me and I have a nerve pressing right on my lower upper part of my head and saw it on the x-ray and I have a case that he had to ask some other of his collegues about but he thinks that he should be able to help me about 90%. IF HE DOES, YOU WILL HEAR ME SCREAMING FROM ALL THE WAY HERE:>)  Here is a site for more info. and great testimonials you can check out. There is a fibro. one on there too.  http://www.uppercervicalcare.com/testimonials.html"
I have reported on various forms of chiropractic in several newsletters.  Search at www.fms-help.com/newsletters.htm for keywords "atlas orthogonal" - "upper cervical" - "chiropractic" - or "upper brain stem."
 
 
18.  L-TRYPTOPHAN FOR SLEEP
 
From a reader--
 
"There is a new formula on the market. It just came out early this year and it works great. It is an Advanced L-Tryptophan formaula.  Life Extension makes it and I have found it in common health food and herb shops. It is called Optimized TryptoPure Plus. I get it at my local Herb Shop and it costs $40 for 90 pills. I guarantee it absolutely works. Of course everyone is different, but this is a different formula. It has something in it that bypasses the hormones that suck the life out of L-Trypophan before it reaches the brain. The formula is set up to where you get the most out of it without the levels being depleted before it reaches the important parts.
I know it is pricey, but I suggest giving it a chance because I have never seen one work so well that was not a prescription. It says to take 3 a day, but you do whatever works for you, but given that the bottle contains a 30 day supply.  It does help with sleep. Myself and my two kids take it. All three of us have these diseases and problems with sleep, and these pills significantly help out. It is the big difference between restful sleep and constantly waking up to readjust yourself. It makes you feel naturally rested. It only takes about three days to get intot he system fully too.  It also helps with energy and depression, and there is a little bit of better concentration. Of course these things are only side effects of these issues we have but for the L-tryptophan formula in this one, it has a lot better response than any other I have tried. I figure if it can handle at least three things in one capsule and have that great of an effect then it is worth the money. I have cabinets full of products that never worked that eventually will just end up in the garbage, and for this to work on me is significant to me.  Like I said before though, everyone is different, and although this formula is made for depression it is highly effective for sleep (it even prints it on the bottle that it is for sleep)."
 
 
19.  MYCOPLASMA INFECTIONS and FMS/CFS/ME
 
From a reader (in response to the article mentioned in Topic 16 above)--
 
"My initial understanding was the heart is only involved if you have CFS/ME, but NOT w/ FMS. Now I know that is not true. We now know my dear Grandmother had FMS/ME. All her life she was plagued w/ health problems and she found few answers other than with the symptoms involving her heart. She died of a heart attack and stroke at 62. She had a pacemaker in her 50's, and had problems w/ blood clots in her legs. My mom has FMS and at 62 had a severe blood clot that nearly killed her. Fortunately she was with my brother-in-law who is a nurse and he got her an ambulance ASAP which saved her life. Her cardiologist wrote in the medical report that the cause was FMS. We were all surprised he put the two together as he wasn't a fibro specialist. The cardio doc said FMS caused hardened arteries and hard spasm-y heart muscles (just like it does our other muscles). He said that causes the heart to pump unevenly, leaving a pool of blood in the left chamber (it's called regurgitation) which can then thicken and increase potential for clotting.  My mom now takes blood thinners.  I have never had any docs I've seen for FMS say it affected my heart, but when I saw a CFS/ME specialist he told me how it affects my heart. He did blood work and found that I have 4 mycoplasma infections that affect my heart. One is called Chlamydia pneumoniae (FYI - it's not a sexually transmitted virus - it is transmitted by respiratory infections and it then mutates, spreading throughout the body.)  I take nitroglycerin daily now and what's surprising to me is that it greatly relieves my pain, especially in my legs.  My doc said that due to our heart problems, the smallest vessels don't get the blood they need and taking the nitro gets circulation to those small vessels which is why it relieves pain."
 
 
20.  IS YOUR MATTRESS MAKING YOU SICK?
 
http://articles.mercola.com/sites/articles/archive/2008/11/11/is-your-mattress-making-you-sick.aspx
 
 
21.  DOM'S UPDATE
I'm staying reeeeally functional these days.  Hurray!!!  I'm keeping up with my piano teaching and church music responsibilities.  Still have bad days now and then, but I'm much better "managed" lately.  Sadly, there's no "cure" for FMS/CFIDS.  For me, the MAIN THINGS are REDUCING STRESS and getting on the right meds for SLEEP.  And also don't live or work in a MOLDY environment ("sick building" www.fms-help.com/mold.htm).   A list of things that help me is at www.fms-help.com/what.htm.  Also, check out my 100 Tips for Coping at www.fms-help.com/tips.htm.  You will also find fascinating and helpful articles on my homepage at www.fms-help.com (look in the yellow box).  I welcome all of my newsletter readers to join my support group at http://health.groups.yahoo.com/group/dominie - we have over 425 members now - lots of caring and sharing going on!
 
Dominie
www.fms-help.com
 


II Corinthians 1: 4 - "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." 


 
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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.