Dom's Newsletter

December 18, 2010
A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE PREVIOUS NEWSLETTER ARCHIVES
1. READERS WRITE
"Thanks for the newsletter www.fms-help.com/121610.htm, as always it is full of interesting information."
|
"This newsletter really
helped me." |
2. VALIUM FOR MENIERE'S DISEASE
From a reader--
"I couldn’t help but respond to the misguided response from a reader [Topic 6, www.fms-help.com/121610.htm] regarding the use of valium for meniere’s. That reader probably does not understand the need for vestibular suppression and the difficulty finding medications that can accomplish that without further impairing someone’s daily life. Use of benzodiazepines is common and valuable because the dose can be reduced or tapered. Once overwhelming dizziness takes over (and it can be present for DAYS or WEEKS at a time) a medical intervention is absolutely necessary. It’s no different than some of the medical interventions used for fibro/chronic fatigue (Lyrica, Neurontin, Cymbalta, etc.). If you have never had to deal with the crippling effects of chronic or episodic dizziness, you probably would have no understanding of how disabling it can be – it is as bad if not WORSE than fibro/chronic fatigue because it limits movement and certainly driving, working, social life, etc. And, it is hell to recover from. I know – I’ve had to deal with both…. I prefer my past struggle with fibro."
3. READERS' PRAYER CORNER
From a mom with fibro: "This time of year is extremely difficult for a lot of people. I am one of those. To be short, I have a son who is killing himself with alcohol. It is a horrific thing to watch your child killiing himself. He has got the demon of alcoholism and rebellion in him. I am hanging on by a thread right now. I need prayers so badly for God's strength and wisdom. I am so so tired and most days would rather be in heaven. My FMS and CFS are raging with all the stress. This had been going on for 20 years. I have such depression and am so ready to be done. I am waiting for the phone call that he is gone. I don't think I will survive burying my child. We need a miracle."
4. CHRONIC ITCHY RASH
From a reader--
"Do you now know or have know anyone with CFS or Fibro with a chronic, itchy rash on their body? It has been going on for several months and just won't go away except for a couple of days when I putt hydrocortisone cream on them. There is more than one. Please let me know whenever you can because I just don't know what it could be. My doctor said it was dry skin but I know it isn't. It started under my breasts but has now spread to one of my hips and in the middle of my abdomen. I don't ask questions very often but this one has me baffled."
FROM DOM: Could it be parasites? I saw a program on Discovery Health Channel recently called Mystery Diagnosis, and there was a story something like this. Google the program online. Also, see Topic #13 below.
5. BREASTFEEDING AND FIBROMYALGIA TRANSMISSION
Question from a reader--
"I was wondering if you have any information about possible transmition of fibromyalgia by breast feeding. I know the study from the Whittermore Peterson Institute says CFS is transmitted by human fluids such as breast milk, but what about Fibromyalgia? I'm about to have my second baby and I really want to have some information about this, I don't want to take the chance to transmit this to my baby."
FROM DOM: Anyone with information or comments? Write
dombush@bellsouth.net.
6. RACING THOUGHTS
From a reader--
"My "A" personality like yours, sometimes gets the best of me...I was very impressed by your experience of constantly singing or humming a church song or whatever you may have stuck in your head, and keep humming; I DO THE SAME, and thought I was going coocoo! People assume I am simply happy, but I got to wonder!"
FROM DOM: The best thing I found to stop racing thoughts was the immune balancing powder. Write dombush@bellsouth.net for information on how to use this.
7. FIBRO PAIN
From a reader--
"For pain, my alternative MD recently gave me a supplement called AR-ENCAP from Thorne (brand name). It has MSM, Boswelia, Curcumin and something else. Works immediately and then you just keep getting better over time. Three, 3x/day."
FROM DOM: I have been blessedly pain free since 1996, after 14 years of suffering extreme fibro pain. A list of things I use, and some PAIN SUGGESTIONS are at www.fms-help.com/what.htm.
8. KITTEN'S SEIZURES
From a reader--
"I have a 4-month-old kitten who has been having seizures, which is not common, and the book on CFS that you referenced said that pets can also become infected and get seizures. I don't know what is causing my kitten's seizures, but perhaps it's because she got CFS from me...? She's the sweetest kitten I've ever known, and it makes me sad that she goes through that.
the vet wants me to send him the link to the article you
referenced. i told him the studies were from prominent doctors in the
field, so he didn't seem to doubt it. he was definitely curious. he
said seizures in cats are not common.
i want to have the kitten tested for HHV6 to see if she has it. they can get the herpes virus too. the article was implying that the herpes virus is a definite co-factor in CFS, and it must be since so many of us are plagued with it. it'll be interesting to find out.
i'm interested in trying Kutapressin, i believe mentioned in the article, which is a pig liver extract. it boosts the immune system, similar to what bovine colostrum does. few side effects. does your site have info on it already? i haven't checked. do you mind asking if anyone's tried it and if it helped?"
FROM DOM: Anyone have info or
comments? Write dombush@bellsouth.net.
9. COLD SORES
From a reader--
"When I was in my teens, I used to suffer terribly with cold sores. I went into nursing when I was 19 and had to have a smallpox vaccination as part of the preparation. From that time on, the cold sores pretty much disappeared and the GP put it down to the vaccination. I was so thrilled! It is a bit drastic to have to resort to such a route, but if nothing else helps, it may be worth a try. There have always been pros and cons for vaccinations, but for me, this worked."
FROM DOM: Wow. That sure is interesting! See my cold sore page at www.fms-help.com/coldsores.htm. I now stay on Acyclovir daily to avoid cold sores.
10. CHRISTMAS GREETING TO ALL DOG LOVERS
From a reader--
FROM DOM: This is sooo sweet! I saw it last year, but it was great to see it again.
11. HAS
ANYONE TRIED KUTAPRESSIN?
One of the still-unexplained manifestations of CFS is the appearance of skin rashes. Rashes can have several causes; for example, they can be caused by allergic reactions, either by something that comes in contact with the skin (like poison ivy), or by something taken internally (like medicine or a food to which a person is allergic).
Rashes can be caused by infectious agents. The measles virus causes a very distinctive rash, as do Lyme disease and scarlet fever (both of which are caused by bacteria).
Rashes can also have emotional or psychological causes, because of the interaction between mind and body. Even anxiety can cause hives and other kinds of rashes.
No one knows what causes CFS patients to develop rashes, but they occur in about half of adult patients, commonly on the face and upper body.
For some unknown reason, rashes occur even more often in children with CFS than they do in adults. Dr. David Bell, who studied a group of children involved in a CFS outbreak in upstate New York, found that 80 percent of the children developed rashes.
Patients have described many different kinds of rashes to me. One reason that rashes might be so common in CFS is that allergies are worsened; people who had allergies before they developed CFS often find that their allergies are much more severe after they come down with CFS.
One reason for that might be the involvement of a naturally-produced chemical called histamine in CFS. Histamine, which is also increased in AIDS, controls certain kinds of allergic reactions as well as the production of stomach acid.
In addition to causing allergic reactions, histamine is also thought to bind to immune system cells and produce a substance that results in the suppression of the immune system.
So histamine production is another area which demonstrates how the immune system can be both up-regulated and down-regulated at the same time. While too much histamine can produce an allergic reaction -- which is an over-reaction of the immune system -- it can also cause the suppression of the immune system.
Another result of this general malfunctioning of the immune system is that unexpected bacterial and viral infections can appear. Acne, which can result from a bacterial infection, and the re-emergence of herpes virus infections -- like cold sores or shingles -- are examples of the kinds of infections that can occur when the immune system is depressed. AIDS patients, of course, develop the same kinds of bacterial and viral infections because of the down-regulation of their immune systems.
Numerous CFS researchers have reported that their adult patients can develop acne -- even patients who've never had skin problems before they became sick with CFS. Dr. Paul Cheney cautions that this type of acne, and other skin infections, may require more aggressive treatment in CFS patients than they would in healthy people for the treatment to be successful.
Herpes viruses live in harmony with people, generally speaking; once we become infected, the herpes viruses usually stay dormant, kept in check by an intact immune system. But when the immune system is damaged, as it is in CFS, herpes viruses can become reactivated and cause various kinds of skin (and other) problems.
One herpes virus that most people are infected with is herpes simplex, the virus that causes common cold sores. CFS patients sometimes have recurrent cold sores, which signal that the herpes simplex virus is no longer being controlled by their immune systems.
Another herpes virus, herpes zoster, causes chicken pox in children; later in life, it can become reactivated to cause shingles, a very painful skin condition in adults.
Both types of herpes virus reactivations -- cold sores (or other skin lesions caused by herpes simplex) and shingles -- can occur in adult CFS patients because of the "down-regulation" of their immune systems.
In children with CFS, chicken pox -- the childhood disease caused by the herpes zoster virus -- can be particularly troubling. Dr. David Bell has found that, among children with CFS whom he has studied, more than 80 percent had already had chicken pox before they contracted CFS. After developing CFS, however, about 12 percent of those children who'd never had chicken pox got the disease, and about 12 percent had it twice. Dr. Bell even found that one of those 74 children had chicken pox three times after developing CFS, and another had chicken pox five separate times after coming down with CFS.
An experimental treatment for CFS, Kutapressin -- which is an extract of pig liver -- has been found to be useful in treating herpes zoster-caused shingles. If Kutapressin stops the reactivation of herpes viruses, that may be why CFS patients' symptoms appear to improve when they are treated with the drug."
http://blogs.wsj.com/health/2010/12/17/xmrv-still-waiting-for-a-test/
FROM DOM: I think we who have FMS/CFIDS are infected with a "stealth virus" that hides in our brain, body tissue and organs - and that is why it is so difficult to locate it just in the blood. See my page on stealth viruses at www.fms-help.com/stealth.htm. Researchers are trying hard to come up with a blood test for XMRV, but it is proving elusive so far. We should pray for these people who are doing this difficult work and for the truth to be revealed.
Back in 1958 when I was a young marine stationed on the island of Okinawa, I became closely associated with a man I deeply admired. His name was Bob Newkirk.
I didn't know what it was exactly that first drew me to Bob. More than anything else, I guess, there was something refreshingly unpretentious about him. He was devoted to the things of the Lord, no question, but it was never on parade, never for the purpose of public display. And I loved that.
I never got the idea that Bob was interested in making big impressions on me or other people. He was what he was, plain and simple—far from perfect, but authentic. Real.
I remember dropping by his home late one rainy afternoon to pay an unexpected visit. His wife met me at the door and informed me that he was not home. She added, "You've probably noticed lately that he has been under some stress. I think he may be down at his office. I'm not really sure. But he told me he just wanted to get alone."
I decided to try Bob's office, a little spot down in Naha. I caught the three-wheel jitney that took me from the village where the Newkirks lived down to the capital city of the island. It was still raining lightly, so I stepped around and over the puddles as I made my way down a street, across an alley, then another alley until I came upon his unassuming, modest office.
Before I arrived, however, I could hear singing in the distance . . . "Come, Thou Fount of every blessing, tune my heart to sing Thy grace." It was Bob's voice! I'd know it anywhere.
I stood outside in the rain for a few moments, listening, as my friend continued singing the simple hymn. Then, I confess, I peeked in the window and saw a candle on a table, my friend on his knees, and not another soul around. He was spending time with the Lord . . . all alone.
As I stood outside, the soft-falling rain dripping off my nose and ears, my eyes filled with tears of gratitude. Bob never knew I came by that evening, but without his knowing it, I got a glimpse of authentic Christianity that night. Not piety on parade . . . not spiritual showtime, but a man "in the shelter of the Most High."
In the back streets of Naha I learned more about simple faith than I would later learn in four years of seminary.
When it comes to faith, there is no substitute for the real thing.
Day by Day, Charles Swindoll, July 2005, Thomas Nelson, inc., Nashville, Tennessee.
21. NEW BOOK ON M.E. - "THE SOUND OF A WILD SNAIL EATING"
From a reader--
"I wanted you to know about this book written by Elisabeth Tova Bailey, a woman ill with severe ME/CFS who wrote the book The Sound of a Wild Snail Eating. Dr. David Bell states that….”this book is a triumph of the human spirit……The writing is magnificent.”
A friend gave Elisabeth a snail from the woodlands nearby and placed it in a terrarium and realized that as she felt ‘trapped inside a stark, white box”, the snail was similarly confined. Her journey of discovery about herself, the snail and her courage bring awareness about the impact of ME/CFS. What I find unique is the fact that she has managed to create interest and awareness to others by not only relating her story of discovery about herself but also about a relatively unknown creature.
Elisabeth’s has received several Pushcart Prize nominations and a Notable Essay Listing in Best American Essays. Just viewed Craig Maupin of The CFS Report ‘s review which gives a wonderful description of the author’s journey. THE CFS REPORT by Craig Maupin. Review of The Sound of a Wild Snail Eating: http://www.cfidsreport.com/News/10_Elisabeth_Tova_Bailey.html/ You can also view more details on the author’s website and find out about how to buy her book at: http://www.elisabethtovabailey.net
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Well, that's all for now! Thanks to the many caring readers who send in articles for the newsletter. Pooling our information is such a blessing!! Don't overdo it for the holidays. We had our Christmas program at church last Sunday night "Comfort and Joy" and it was beautiful. Now I'm trying to get things ready for our family Christmas with 4 generations who will be present. Will try to go to a Christmas Eve candlelight service, as well.
Dominie Bush
II Corinthians
1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at
www.fms-
help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their
families.
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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.