DOM'S NEWSLETTER
May 12, 2010
Today is Fibromyalgia Awareness Day...
a day to educate our society about fibromyalgia (FMS), chronic fatigue & immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (M.E.) and other neuro-endocrine-immune disorders.
FROM DOM: I have had FMS since June 1982 www.fms-help.com/fibro.htm. I later developed CFIDS in 1987 www.fms-help.com/fatigue.htm. I have had a sleep disorder since age 16 www.fms-help.com/insomnia.htm. I am now (decades later) "managed" but not "cured." (There is no "cure" yet - in fact, medical researchers aren't even sure of the cause!) A list of things that help me function every day is at www.fms-help.com/what.htm. I have "100 Tips for Coping" at www.fms-help.com/tips.htm. If you need help explaining FMS/CFIDS/M.E. to family and friends, there are many excellent articles on my homepage at www.fms-help.com that you can share. WE DON'T LOOK SICK, so people assume we are fine, when actually we are suffering greatly. I am thankful for the many things I have found over the years that help me feel soooo much better - I even enjoy my work every day! But I spent many horrible years as a severe fibromite, so I know the depths of suffering and disability this illness can cause! I am glad to be able to write this newsletter for fellow fibromites since 1996.
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1. READERS WRITE
"I've just discovered your web site www.fms-help.com and wanted to thank you for the great information on there."
"I appreciate you sharing your wealth of knowledge."
2. SALT THERAPY & IODINE DEFICIENCY
Responses re: www.fms-help.com/050810.htm about UNREFINED SALT (not regular table salt)--
Reader 1--
"My daughter has started salt therapy and I think she is sleeping better. I believe it is to address her adrenal issues. I believe it works best when you take your salt (about 1/2 tsp with water) during your sleepiest time of the day. I will keep you posted on this."
Reader 2--
"About sea salt, make sure you take an iodine supplement as sea salt lacks iodine. I take Iodoral,or you can take kelp tablets that are available at all vitamin shops. A thyroid goiter could develop due to lack of iodine in the diet."
3. DANACTIVE, ACTIVIA & KEFIR
From a reader (who is an RD, LDN - Registered Dietitian, Licensed Dietitian Nutritionist)--
"I would highly recommend folks try Danactive and Activia. It is so important to remember that taking probiotics can be very tricky. If you do get a really strong probiotic, in some very sensitive folks (which can be us!) they can cause too much of the bad stuff to die off too quickly, making us worse. I have had such great success with many people with these two yogurts who were not able to tolerate capsule probiotics. If one has constipation prone IBS, I would add some ground flax seed as well to your diet. If you can't have dairy, soy yogurt and coconut yogurt and kefir (I prefer the So Delicious brand). They have Soy and Coconut, but I love the Coconut milk Kefir and Yogurt. The flavored Kefir does NOT taste like Coconut. For those who are worried about saturated fat- the most recent research on coconut oil indicates no negative effects on cholesterol and can help with loss of belly fat.If you cannot find this brand, you should be able to find Soy yogurt from Stoneyfield farms. Get yogurt made with real sugar - even if you are a diabetic or are on a low sugar diet for yeast or get the plain. (just make this the only thing. Artificial sweetener is not the best growth medium for good bacteria. I also encourage people to try a couple of spoonfuls for a couple of days and judge the reaction rather than taking a whole lot at one time. Small amounts of a good yogurt or kefir or buttermilk are better than large amounts of a poor one. Best to start off slow and work up. Some people will have a reaction to killing off the bad stuff and replacing with good stuff. Some people who cannot normally tolerate regular dairy can tolerate fermented dairy like good yogurt/kefir such as in danactive because it has good bacteria to help digest the milk sugar(for lactose intolerance, not for actual allergic reaction to protein in dairy). You can also make your own fermented Kefir beverage from coconut water, coconut milk, soy milk or dairy from kefir cultures from www.bodyecologydiet.com. Kefir is much easier to make than yogurt. I do not recommend artificial sweeteners, especially aspartame for fibro people because too many folks have said it made their pain worse."
4. DEFINITION OF FIBROMYALGIA
http://www.fms-help.com/fms.htm
5. CATARACTS, CALCIFICATION & VITAMIN K DEFICIENCY
From a reader--
"My cardiologist, Dr. Jim Roberts feels that pathological calcification is a vitamin K deficiency. Examples of pathological calcification, breast "sand", kidney stones, cataracts, arterial calcifications, brain "sand" etc. I would advise the reader to increase food sources of vitamin K in addition to using a good vitamin k2 supplement. I would also speak with an integrative physician who does EDTA chelation therapies to see if the calcification process can be reversed. There are also oral forms of EDTA that may work also. Here is a good article re vitamin K deficiency/pathological calcification: http://www.lef.org/magazine/mag2009/jan2009_Vitamin-K-Protection-Against-Arterial-Calcification-Bone-Loss-Cancer-Aging_01.htm."
6. VETERANS' HEALTH CARE
From a reader re: www.fms-help.com/050810.htm--
"I just wanted to say that I am also a vet and have been going to the VA for about 9 years now and my care there has been horrible also. The reason I have been going there is because once I could no longer work anymore I lost my Health insurance from my job and had no other choice but to go there because I couldn't afford to buy my own health insurance anymore. I basically just go to the VA for my pain medicine now and don't really expect much more from them. I believe socialized medicine is going to be a complete nightmere for our country and many doctors and nurses are going to leave because there is NO WAY they can take care of so many patients (nor should they have to). So basically we are going to have way too many people in our health care system and no where near enough health care workers."
7. MYER'S COCKTAIL
From a reader--
"I went to a good naturopath last fall and she recommended a series of Myer's Cocktails. She told me it would help my pain. I had 7 of them and then stopped them. I paid $120 for each and wasn't feeling any better. However, I do think they served some purpose. I do applied kinesiology on myself and my testing tells me that the seven shots strengthened my immune system by 30%."
8. IS FIBRO GENETIC?
From a reader--
"I have recently been diagnosed with rheumatoid arthritis and fibromyalgia. My aunt, mother and sister have it too. I have been searching for information on holistic treatment and all the information is overwhelming sometimes."
FROM DOM: See http://www.fms-help.com/genetic.htm.
9. SIX REASONS TO AVOID MILK & DAIRY
http://www.ultrawellness.com/blog/why-you-should-avoid-milk
10. XMRV UPDATE
From a reader--
Consensus at World Retrovirus Meeting in Prague - Replication Study
Finding XMRV in CFS Just Matter of
Time
May 4, 2010
The following Dutch press release was
posted in English May 3 by the
European Society for ME
(http://esme-eu.com)
Last October U.S. scientists presented a
breakthrough around the
research on chronic fatigue syndrome (CFS), which
was published in
Science. They found traces of the retrovirus XMRV in the
blood of CFS
patients. Thereafter, three groups of European researchers,
including a
Dutch group from Nijmegen, couldn’t confirm these findings.
However, at
the 'Centennial Retrovirus Meeting' in Prague it became clear
that the
first positive 'replication study' seems only a matter of time.
[Abstracts of papers presented at the Prague conference are available at
the CRM site.]
The June issue of the Dutch magazine Ortho will focus
on the multi-day
conference in Prague, which ends today. Especially in the
corridors this
new retrovirus was the talk of the day. Insiders agree that
the negative
XMRV studies which have been published so far, were not exact
replication studies. The several groups of researchers used techniques
that differed too much from those used by the U.S. researchers. This is
also true for a yet unpublished German study, where XMRV wasn’t found in
blood samples from CFS patients either.
Recently the American
scientist Dr. Judy Mikovits visited several
European research groups to help
them with the proper laboratory
technique. It is now clear that these visits
are starting to pay off.
During the Prague Conference, Mikovits explained
once more in great
detail the complex methodology of the Whittemore-Peterson
Institute
(WPI), the National Cancer Institute (NCI) and the Cleveland
Clinic.
This methodology of culturing the virus is imperative because XMRV
is
only present in extremely low concentrations in the peripheral
blood.
Dr. Francis Ruscetti of the renowned NCI – a U.S. government
agency –
told Ortho that he hopes this controversy will all die away in
2011.
He is especially surprised about the fact that the investigators of
the
UMC St. Radboud at Nijmegen concealed in their publication that the
Americans found traces of XMRV in the same blood samples from the Dutch
patients. "I don’t know how they get away ethically with this," said
Ruscetti. "I don’t think that is good science."
Ruscetti pointed out
again that the WPI, the NCI and the Cleveland
Clinic applied four procedures
in their research. "In those negative
studies they only tried one." Ruscetti
also ventilated his annoyance
over what he calls the "whispering campaign"
about contamination.
According to the Nijmegen researchers, the Americans
contaminated or
polluted the Dutch blood samples.
Among others
Ruscetti is supported by Prof. Dr. John Coffin, who is
linked both to the
NCI and Tufts University in Boston. He is considered
one of the most
prominent retrovirologists in the world.
"People have raised the issue of
contamination," said Coffin. "But we
don’t really know anything about that
yet. We don’t have any evidence. A
lot of the studies were done in fact at
the NCI, in the lab of Francis
and Sandra Ruscetti. They have a long
experience with these viruses and
are very careful workers."
Coffin
emphasized once again that doing a replication study implies that
it is
performed in exactly the same way. "In none of the studies that
have been
published so far that were negative, the virus was cultured,"
said Coffin.
"Only the Science study did this, which is a very
compelling
point."
Researchers from Nijmegen were not present at this leading
conference.
FROM DOM: I've been trying to keep the XMRV info updated at www.fms-help.com/XMRV.htm. XMRV is a retrovirus that was detected in the blood of most CFS patients by the Whittemore Peterson Institute in Reno, NV. They made the announcement in November 2009 and now replication studies are underway.
11. PREDNISONE FOR FIBRO?
From a reader--
"I was reading 'real age' a newsletter via computer from Dr. Oz.. One reader wrote to him... 'I control my fibro with 5 mg. of prednisone a day. Feel fine. If I miss one dose, a couple hours later I feel it!'"
FROM DOM: Decades ago when my fibro was uncontrolled and at its worst, I was given prednisone for an ear infection (that wouldn't go away for 6 months!) Amazingly, my fibro pain stopped! I begged the doc for a refill, but he said no. He told me that prednisone was "Short term magic - long term tragic." I think it can eat holes in your bones and other bad side effects if you stay on it for any length of time. Fortunately, a few years later, I found complete relief from my fibro pain with a natural substance after 14 years of suffering. My list of helps is at www.fms-help.com/what.htm.
12. CURAMIN
From a reader--
"I have a question I would like added to the next newsletter. I received information from www.EndFatigue.com which is the newsletter from Dr. Jacob Teitelbaum discussing a new pain relief product called Curamin and the wonderful results. Have you or any of the readers heard about it or tried it?"
FROM DOM: Please write dombush@bellsouth.net if you have tried it. Curamin is high-powered turmeric.
13. TRAUMATIZED BY COMBAT
Fort Riley, Kansas
Reuter’s News - Sat. May 8, 2010
U.S. military is experimenting with aroma therapy, acupuncture and other unorthodox methods to treat soldiers traumatized by combat experiences, Defense Secretary Robert Gates said on Saturday. "We have an experimental unit ... treating soldiers with PTS (post-traumatic stress) and using a number of unorthodox approaches, including aroma therapy, acupuncture, things like that, that really are getting some serious results, and so maybe we can throw that into the hopper as well," Gates said. Read Complete Story: http://www.reuters.com/article/idUSTRE64802D20100509?type=domesticNews
FROM DOM: I'm glad they are trying aromatherapy. I have many essential oils that help me with brain fog, anxiety, infection, stress, skin problems, relaxation, etc. Those of us with FMS have brains that don't manage or cope with stress "normally." A list of my most helpful and favorite essential oils is at www.fms-help.com/oilsstore.htm. I have heard that a young man who survived the Columbine massacre uses several of the same essential oils I do (most likely for PTSD!)
14. SLEEP NUMBER BED
http://forums.webmd.com/3/fibromyalgia-exchange/forum/14936/11?ecd=wnl_fib_051110 - interesting discussion of the sleep number bed - pros and cons
15. MODESTY
FROM DOM: I just ordered a set of those nifty Cami Secret panels www.camisecret.com for wearing with low cut blouses. Somebody sure had a great idea. I love modesty and I'm really tired of hoisting up my blouses all day. Today's fashions are the pits...and let's not even talk about how spandex reveals every little roll of fat on your body....ugh!! Unless you look like a very young Twiggy, those clingy stretch fabrics do not enhance feminine beauty one bit. My Cami Secret is on back-order, but I hope to have them in 6-8 weeks.
A little aside here.... I was at the outlet mall a few weeks ago looking for a dress. The fashions in all the stores looked like they were designed for teenage girls. There was nothing suitable for someone my age (58). It was getting really discouraging until I spotted a store further down the mall called "Fossil." I hurried toward it thinking, "My kind of place!!!" However, when I got there I discovered they only sold purses and wallets. Ha!!!!!!!
16. DISGUISED CELL PHONE TOWERS - BRAIN TRAUMA
http://www.youtube.com/watch?v=RIDWR9T-w8s&feature=related - radio frequency energy is a potential non-lethal weapon that is now hidden in trees, steeples, houses, flagpoles, etc. - electromagnetic fields change moods and behavior by affecting the brain and central nervous system. They can cause depression or even insanity. They have a strong possibility for electromagnetic warfare - controlling population groups by causing them to feel apathy, fear, hysteria, depression, etc. simply by using various electromagnetic fields for mind control.
17. VITAMIN D DEFICIENCY & FIBRO
From a reader--
http://www.easy-immune-health.com/fibromyalgia-and-vitamin-d.html
FROM DOM: Use the Google box at the end of this newsletter to search for many references to Vitamin D in past newsletters.
http://www.wnd.com/index.php?fa=PAGE.view&pageId=149837 - Snippet from this article by Jill Stanek: "I have no preconceived assumptions about pro-life men. I know exactly what kind of men they are. They are stand-up, not stand-down men. They respect women. They love children. They take responsibility. They are protective. Unlike pro-abort men, pro-life men have no selfish stock in the pro-life movement. They don't exploit women as sex objects where consequences are dealt away with."
19. L-THEANINE FOR SLEEP
http://www.web-us.com/l-theanine_anxiety_reducer.htm
FROM DOM: I have just begun trying L-theanine for sleep, upon the advice of a reader. However, this article says it both increases relaxation as well as alpha brain waves. So now I'm confused. I thought that "alpha wave intrusions" are the cause of our fibro sleep disorder. Anyone have comments on L-Theanine (an amino acid)? Did it help you with sleep? Write dombush@bellsouth.net. I have had a sleep disorder since I was 16 www.fms-help.com/insomnia.htm. I am "managed" for sleep with meds www.fms-help.com/what.htm, but would sure like to sleep naturally. A list of everything I've tried for sleep is at www.fms-help.com/sleep.htm. Strangely, I personally know a lady in her 50's who DOES NOT SLEEP (she does not have fibro). She has been like this most of her life. She just lies there at night and tries to relax. I don't know how she is still alive. She looks like a "normal" person and functions more or less normally! Here's an article that says L-Theanine helps sleep quality: www.lef.org/magazine/mag2006/jan2006_report_theanine_01.htm.
20. EASY CLOTHES SHOPPING
FROM DOM: Wow! Wouldn't this be great!!? Stress-free, hassle-free clothes shopping!
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'Til next time,
Dominie
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." Visit Dominie's FMS/CFIDS Homepage at
www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their
families.
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME
HOMEPAGE
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.
