DOM'S NEWSLETTER

December 13, 2009

A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families.

Dom's Quick Links: Fibromyalgia CFIDS Insomnia Search Site & Newsletters Meds & Supplements Homepage Previous Newsletter

13 topics below. Don't miss the RED ones! Readers comments in BLACK. My comments in TEAL.

1. XMRV TEST AVAILABLE FOR $399

From a reader--

"I do not know if this test is 100% accurate, but it is available to the general public without a doctor's Rx."

Cooperative Diagnostics Offers Test for XMRV Virus – By Mail, “No Lab Visit or Doctor Approval Necessary”

October 26, 2009

Cooperative Diagnostics, LLC has announced the availability to the general public of a new diagnostic assay for Xenotropic Murine Leukemia-Related Virus (XMRV). For details, go to www.codiagnostics.com/XMRV/index2.php

Those interested in obtaining a blood sample collection kit (price $399) may complete an online form at the Cooperative Diagnostics site. According to the instructions:

• A sample collection kit will be sent to the address you submit within 2 to 3 business days.

• You place a drop of your blood on a filter paper that is provided and return the envelope to the lab, where the test will be completed.

• Within 5 to 7 business days after the lab receives the sample you will be sent an e-mail with the test results.

• The test results may be printed to show your physician.

Positioning the test as intended “to assist physicians in the diagnosis of ME/CFS and other disorders potentially caused by the virus, Cooperative Diagnostics cautions that it “is not intended to indicate the presence of absence of CFS or other X-associated neuro-immune diseases. Consultation with your physician is necessary to interpret the results.”

According to the Press Release issued Oct 26 by Cooperative Diagnostics:

…The Simplex XMRV test identifies patients infected with XMRV. XMRV has been recently identified in 95% of Chronic Fatigue Syndrome patients, in addition to large numbers of patients with Fibromyalgia, Atypical Multiple Sclerosis, and other clinical conditions. Cooperative Diagnostic's XMRV assay is the first diagnostic for the virus to be made available to the public.

"This may well be the fulfillment of a promise that I made a number of years ago to two good friends, who both became ill from Chronic Fatigue Syndrome,” said Brent C. Satterfield, PhD, President and CEO of Cooperative Diagnostics, LLC. “I saw firsthand the mental anguish they endured by those closest to them including the medical community as they were told their condition could be psychological.

“When we learned that XMRV might have such a high association with Chronic Fatigue Syndrome, we immediately became interested in developing a test. Now, my two friends and everyone else who has suffered from the condition can take testing for XMRV into their own hands."

The Cooperative Diagnostics XMRV test is based on its proprietary real-time PCR nucleic acid detection technologies. It is capable of detecting the virus inside of blood cells. The test is available to the public at www.codiagnostics.com/XMRV/index.php for $399.00. In order to provide quality testing in a high throughput environment, Cooperative Diagnostics has contracted Clinical Reference Laboratory, Inc. (CRL), to process these assays.

CRL's Executive Director of Molecular Diagnostics, Dr. Heather Newkirk, said, "This unique technology from Cooperative Diagnostics enables a powerful detection product which synergizes well with CRL's expertise in offering quality molecular services. We look forward to working with Cooperative Diagnostics to provide quality services."

Established in 1979, CRL is a privately held reference laboratory in Lenexa, Kansas offering leading-edge testing services in the areas of Clinical Trials, Molecular Diagnostics, Insurance, and Toxicology. CRL is one of the largest single site laboratories in the country and analyzes over 80 million tests annually. Additional information is available at www.crlcorp.com.

Cooperative Diagnostics, LLC
117 Gregor Mendel Circle
Greenwood, SC 29646
(864) 229-1567
For E-mail Contact: http://www2.marketwire.com/mw/emailprcntct?id=2ECC6DEF96D9FC72

Source: Cooperative Diagnostics LLC website, and news release, Oct 26, 2009

2. CREATIN HELPED

From a reader (age 72)--

"A little over two months ago, I started taking creatin (normally used by bodybuilders to help build muscle), and had unexpected results. I don't know why I was even reading about it or what made me decide to try it, except that its main function is to help keep water in the muscles. I am always thirsty even though drinking a lot of liquid (no, I don't have diabetes).

The last couple of years I have had trouble standing up after sitting or lying down for a while. I had to walk bent over for several steps, and would have to grab on to things to pull myself upright. Also, my all-over fibro pain had gotten bad, to the point where I could feel it even when just sitting still.

After reading about creatin, I got an inexpensive flavored brand at the grocery store and took a scoop in water. The next morning, I got out of bed as usual and went to the bathroom, but it wasn't until I was IN the bathroom that I realized I had walked fully upright from my bed! No creeping and crawling to the toilet anymore!

After taking the creatin a couple more days, my fibro pain went down to where I can only feel it if I touch myself or bump into something, which is "normal" for me. I took the creatin every day for about five days, then every other day for a few weeks, now can go several days without it. The health food store brands are much more expensive, but it appears that I don't need that quality for it to help.

BTW, this summer I got turned onto DMSO, and it has done a miracle on one finger that hurt so badly 24/7 with arthritis that I wanted to cut it off.

I no longer look for a cure for my fibro or fatigue or arthritis or knee pain or IBS or psoriasis but if I can get a little pain relief, I am satisfied."

FROM DOM: Wow. Isn't that interesting about creatine! I have had references to creatine in past newsletters: www.fms-help.com/0927088.htm (Topic 9) and www.fms-help.com/100207.htm (Topic 18). About DMSO, I am a big fan of the rose-scented DMSO cream which I've been using since last summer. It has prevented cold sore and shingles outbreaks for me, and I am thrilled with it, because I have been suffering almost continuous cold sores for many years. I also began putting oxygen drops in my drinking water - this raises my pH to a more healthily alkaline level. I have had increased stamina and NO cold sore outbreaks since beginning this in August - and it is now mid-December. A miracle for me, as I was having cold sore outbreaks as often as every 2-3 weeks, especially as I have gotten older (now 58.)

3. RESTORIL (TEMPAZEPAM)

Please reply directly to Pam pamela.mills@hotmail.com--

"Do you know of anyone that has tapered off of temazepam (restoril). I have gone from 30mg. to 15mg. (been on 15mg for one month) and just started to go a little lower and I am soooooo sick, nauseated, have no appetite am not sleeping an am paranoid - scary. I'm wondering if it is worth tapering off but am scared that I am taking such a strong and highly addictive medication. - Pam pamela.mills@hotmail.com"

4. MARRIAGE & FAMILY STRESS

From another website--

"What you have written [Marital Harmony www.fms-help.com/marriage.htm] is great! I hope that women take advantage of the advice you give."

FROM DOM: See http://www.marriagemissions.com for lots of marriage and family advice from a Christian perspective on a huge variety of topics. Reducing stress in our lives as fibromites is so important, and family stress can be some of the worst.

5. HIDDEN DANGERS OF MOLD EXPOSURE

FROM DOM: My mold story is at www.fms-help.com/mold.htm. Mold is debilitating and sometimes deadly.

6. WHO GETS ME/CFS?

Got this link from a reader--

FROM DOM: I STRONGLY DISAGREE WITH THE SOME OF THE STATEMENTS IN THIS ARTICLE - SEE BOLD BELOW, BASED ON MAIL I HAVE RECEIVED FROM THOUSANDS OF PEOPLE WITH FMS/CFIDS WORLD-WIDE FOR THE PAST 13 YEARS. HERE ARE THE STATEMENTS--

7. LOW DOSE NALTREXONE (LDN)

"I just started taking LDN (low dose naltrexone) three weeks ago and haven't noticed anything yet. The pharmacist said it would take about six months. The many websites that I have read about it sound like it is a miracle drug. I started out on 4.5mg but that dose is too high - I am having horribly vivid nightmares. I will keep you posted on the effects of this drug."

FROM DOM: Search my past newsletters at www.fms-help.com/newsletters.htm for more info on LDN (low dose naltrexone).

8. TRANSFER FACTORS VS. i26

"I have tried both i26 and Transfer Factor for my fibromyalgia, but I also did quit a bit of research on both products. Without getting too specific Transfer Factor is about 20% of the product that i26 is. It was created by an ordinary gentleman who quote did research by himself on the immune system. I 26 was created out of a joint venture between Con Agra and Dupont funded by 50 million in research. If you are looking for real help don't be taken in by postings by people who are selling the product. I don't sell either product but I also don't doubt that Transfer Factor works for some of you but i26 is truly revolutionary in how it helps your body heal itself. I have been on i26 for 1 year now and wish I would have found it 6 years ago when my doctor did not even know how to spell Fibromyalgia."

FROM DOM: I've been using i26 Complete Support (shake) www.legacyforlife.com/dominie since 2001. I have to have this to function. It works in the "gut" where 80% of our immune system is located. It is something I must use DAILY to have a life.

9. DOM'S CHRISTMAS MUSIC

See www.fms-help.com/CD.htm for details about my Christmas piano CD. I just ran into a friend today who told me she plays it all year long because the music is so soothing! This is the last chance to get Dom's Christmas CD this year, so if you want one, please visit the site.

10. EYE INFECTION BEGINS READER'S DOWNWARD SPIRAL

"About EYE INFECTIONS: May 1 ,2007 I woke up with both eyes crusted over…(PCP said it’s a viral and ordered eye ointment for conjunctivitis), an entire red body rash and complete lethargy and body pain. Also, that was the last day I slept. It went downhill from there with multiple overlapping symptoms. I then had an appointment with an eye center as the eyes just weren’t healed. He was a very perceptive eye specialist who started asking questions about what other body symptoms I had. He asked me to see my PCP for further testing to rule out immune disease’s. Several specialists later I was diagnosed with fibromyalgia. It seems like I have symptoms of Chronic Fatique Syndrome (or should I say ME or Immune deficiency syndrome??) also. The Rheumy that dx me with FMS was one who didn’t really believe in FMS…said I should “suck it up!”I moved on to another Rheumy and we don’t have a compatible and working relationship. So, I’m on the search again!"

11. "HELP ME - I'M STRESSED!" BOOK

FROM DOM: I've decided to try a DNA-protecting product after watching the graphic animation of the XMRV retrovirus on Dr. Oz's show (see www.fms-help.com/120809.htm - Topic 17)! It is supposed to help keep your DNA healthy. I'm not sure exactly how it works, but I can send the info to anyone who is curious about this - write dombush@bellsouth.net. Personally, I feel much more comfortable trying natural helps rather than "drug" cures, unless they are absolutely necessary.

13. DOM'S UPDATE

A list of things I use to manage my health condition is at www.fms-help.com/what.htm. I have been pain free since 1996 (I had severe pain during the first 14 years of my FMS which began in 1982 - see PAIN SUGGESTIONS in red at the link above).

However, I still have other FMS/CFIDS challenges managed by the things on my list, for instance, the sleep disorder, brain fog, racing thoughts, debilitating fatigue, sensory overload, inability to travel, etc.

I was most interested in the reader who sent in Topic 2 above about creatine. Has anyone else tried this? Seems I heard about it back when my FMS pain was really bad, but I got relief through powerful antioxidants in 1996. Please write dombush@bellsouth.net if you had good (or bad) results with creatine.

I was thinking this week as I was doing Christmas shopping, how thankful I am that my FMS/CFIDS is not as debilitating as it once was (see my fibro story at www.fms-help.com/fibro.htm and also - what my life was like when first diagnoseed at www.fms-help.com/interview.htm.) I have found many things since 1982 that have helped me greatly. Thanks be to God. There are still some things I can't do - like get up early, work full-time, or travel, but I am able to work part-time as a piano/guitar teacher, play the organ/piano for my church, and keep up with daily responsibilities. This is a huge improvement over my original status. My best finds this year were the oxygen drops and rose-scented DMSO cream (which prevents cold sores).

Ever since working in toxic mold in 2004-2005 www.fms-help.com/mold.htm and the death of my father www.fms-help.com/eulogy.htm, something has gone wrong (wronger) with my immune system. The most lingering thing is a feeling of sensory overload and inability to travel more than an hour by car without brain collapse (not physical fatigue). However, I did make it the whole 51 miles to my mother's house for Thanksgiving last month. I was so glad to be able to go see her, instead of her having to drive over to see me. She is 88 and runs circles around me at 58. I am thankful for her good health!

Well, I know everyone is busy getting ready for Christmas. This year I am thankful for the love of God through Christ Jesus our Lord - a divine love that flows through us to touch others that God puts in our lives. In this world of sin, confusion and peril, it is great to have the Word of God to believe in and stand on, keeping us sane in an insane world.

For all who have lost loved ones this year, Christmastime can be a painful reminder of our loss. Keep Christ in Christmas, and our eyes upon Him, the Author and Finisher of our faith. May God heal the wounds that life and death inflict on us. We remember with gratitude those serving in the armed forces, who sacrifice their lives and the comforts of home in order to keep us safe.

May we live each day in communion God. He is described in the Psalms as a mother hen whose little chicks run under her wings when they are scared. There is a place of safety in the shadow of the Almighty.

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.