Dom's Newsletter
December 22, 2010
I just wrote a newsletter a few days ago, but there has been some breaking news about the XMRV retrovirus. For those who are following this important issue, please read #14 below.
15 TOPICS in this issue. Don't miss the RED ones! Readers comments in BLACK. My comments in TEAL.
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
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1. READERS WRITE
"I love the newsletter you sent to me www.fms-help.com/121810.htm."
"Thank you so much for your site www.fms-help.com. I save all of the emails, I do not delete them so I can keep going back and forth trying to pick up help."
"I know I speak for all of your readers as to the gift God has given you by giving to all of us with your newsletters www.fms-help.com/newsletters.htm with all the info, news, study, research, God's Word, etc. I cannot imagine the time and effort it takes to do all that you do."
2. WITHDRAWAL FROM BENZODIAZEPENES
From a reader--
"Re: VALIUM www.fms-help.com/121810.htm - I did have disabling dizziness--that was horrible--it then caused panic--they tested me for meniere's--it ended up being protracted withdrawal--i hope this helps a few. I'm not saying there aren't a rare few who have to take it or can take it long term, I'm saying alot of people cannot take it longterm--sends many to E.R. and even psych hospitals with protracted withdrawal---I am a registered nurse---benzodiazepenes are meant to be temporary--there are many articles on this---they can cause much more problems in long run, body becomes very additive to them very quickly even at very small doses--yes they make one feel soooo good at first---but they nearly ruined the life of several people I know and I went through the protracted withdrawal that lasted a year---horrible panic and feeling of doom---after only taking half of a half for short time--this happened when I was given xanax at one time and years later valium for swallowing problems--it happened twice to me and it was a nightmare--search protracted withdrawal from benzodiazepenes--http://www.benzo.org.uk/pha-1.htm."
FROM DOM: Some benzodiazepenes that people with FMS may be taking are: Ativan (lorazepam) and Clonazepam (Klonopin). Also, zolpidem (Ambien) and zaleplon (Sonata) are two benzodiazepine-like CNS depressants that have been approved for the short-term treatment of insomnia. Both of these drugs share many of the same properties as the benzodiazepines and are in Schedule IV of the CSA, per http://www.justice.gov/dea/concern/benzodiazepines.html. On a personal note, I have been taking lorazepam and zolpidem for about 17 years with no problems whatsoever www.fms-help.com/what.htm. They solved my life-wrecking insomnia problem www.fms-help.com/insomnia.htm that began when I was 16 years old. I am now 59.
3. CAN FIBROMYALGIA BE TRANSMITTED THROUGH BREASTFEEDING?
From a reader--
Re: www.fms-help.com/121810.htm - "I am a childbirth educator - I teach, promote, and love breastfeeding. Dr. Mikovits did say that breastfeeding is one of the ways we think cfs is transmitted. I believe that cfs and fibro are just two sides of the same coin, as do others. They really are the same illness, just manifesting in different ways, in my opinion. As much as it pains me to say this, tell that mom she is better off not breastfeeding her baby. This is what formula is for. XMRV is very likely in her system, but I just read some data saying that it was not in cord blood, so that it is not in the baby prenatally. It is most likely transmitted through breastfeeding. Yay. I believe I probably gave it to both of my daughters. I don't have my own xmrv results yet, but I will find out at some point and my other daughter is getting tested too, having just received her test kit from the wpi yesterday."
4. ITCHY RASH
Reader 1--
"I am writing in response to a reader’s questions regarding a rash that began under her breasts and spread to her abdomen. First, it would be preferable to go to a dermatologist if she has not done so already. Second, it could be a yeast related rash – it happened to my neighbor, and it is seems to be even more common in larger breasted women. The reader’s doctor could have prescribed a cortisone cream or anti-fungal cream and instructed her to keep the area dry. Third, it could be a reaction to fabrics or detergents, etc. Fourth, it could be but not likely to be a reaction to a food. And, fifth, if the rash does not clear up, consulting an allergist is not out of the question, either."
Reader 2--
"Re: www.fms-help.com/121810.htm - see
http://www.slideshare.net/guestd5e888/candida-rash?from=share_email_logout3."Reader 3--
"This is for the lady with the chronic itchy rash. My mother's friend had a rash that itched so bad it was driving her crazy. After many tests, her doc found that it was candidiasis. He was able to help her by treating this widespread yeast infection on her skin with antifungal meds."
Reader 4--
"I’ve had great success getting rid of the rash that appeared under my breasts. I bought the GREEN container Gold Bond Body Powder. The ingredients are; menthol, zinc chloride, talc, acacia, eucalyptus, menthyl salicylate, salicylic acid, thymol, and zinc stearate. The rash cleared up in about a week. I now apply it periodically to keep the rash at bay. I was truly amazed at how well it worked."
5. GUAFENESIN
FROM DOM: From time to time, I hear from a fibromite who says that the guai protocol (Dr. St. Amand) relieved their fibro pain. I am happy for those who have experienced this, but here is why I have been a bit skeptical, or perhaps I should say quizzical, of this treatment:
7. KUTAPRESSIN
From a reader re: www.fms-help.com/121810.htm--
"I used
Kutapressin back in the early 90's. It was an
injection
prescribed to me by Dr. Charles Lapp of NC who
runs the Hunter Hopkins
clinic for CFS/FMS. Kutapressin can no longer
be obtained on the US
market but it was originally used for treating
shingles. I have tried
and tried to get it, but to no avail. I had
the greatest success on
this medication with NO side effects and was 90%
functional until the
company pulled it's formula. I should say I
did find one Dr. who said
he sold his own Kutapressin which he got from
Germany but the vial was
very small and he was charging $65. My
insurance covered it when I
was getting it through a regular pharmacy.
Maybe some day I'll see it
again."
8. CHRONIC RUNNY NOSE
From a reader re: www.fms-help.com/121810.htm--
"I saw the inquiry on runny
nose. I get that with constant sneezing. I
take a
homeopathic remedy called allium cepa it is for runny nose,
works like
magic for me."
FROM
DOM: Wow. Sounds like me during my worst allergy years. For
me, the answer was to eliminate dairy products - especially milk - and this
helped my sinus problems tremendously.
9. SEIZURES IN PETS
From a reader re: www.fms-help.com/121810.htm--
"Recently my mother-in-law's dog started having seizures and after much blood work, they discovered she was diabetic and her blood sugars were abnormally high. I wonder if this could also happen to a cat. Please ask the reader to check to see if her vet has checked the kitty's blood sugar."
10. LOW BODY TEMPERATURE
From a reader--
"In regard to the letter from a person asking about low body temperature a few weeks ago I found a very interesting article in a newsletter from Mark Konlee and Conrad LeBeau (they have a great book called Immune Restoration Handbook) about a natural way to raise thyroid function and therefore body temperature.
This information is taken from
an article by Conrad Lebeau--
"In an article from the Townsend Letter, it
talked about Ashwagandha, an herb that has been used in India
for 3000 years, and how it could regulate and balance the body's hormones. He
searched further on this and found that "Ashwangandha was not only an adaptogen
(refers to natural herb products which are believed to increase the
body's resistance to stress, trauma, anxiety and fatigue) but an
antioxidant and INCREASED THYROID FUNCTION AS
WELL. Ashwangandha should improve body temperature as it increases T3, the
active form of thyroxin. It should reduce adrenal stress, increase energy
and well being and help anyone with chronic fatigue."
Further, the
article says, "Clinical trials and animal research support the use of
Ashwagandha for anxiety, cognitive and neurological disorders,
inflammation, and Parkinson's disease.... Ashwaganda is also used
therapeutically as an adaptogen for patients with nervous exhaustion,
insomnia, and debility due to stress, and as an immune stimulant in patients
with low white blood cell counts."
As a caution, the herb is
also said to have the added benefit of being a liver tonic, so
if you have a toxic liver you may want to start with a low dose
and as you liver cleans out then you could work your way up to a regular
dose."
11. NADH FOR CFS
From a friend--
http://www.immunesupport.com/message/hwnadhtxt.htm - FDA-Approved Trial Heralds Promising NADH Supplement for Treating Chronic Fatigue Syndrome - Snippet: "CFIDS is a disorder of unknown cause for which no effective treatment exists. The incidence of CFIDS, as diagnosed using the Centers for Disease Control and Prevention (CDC) criteria, is between 0.8% and 1.6% in the United States and could be much higher. About 80 percent of reported cases are women. The constellation of CFIDS symptoms includes persistent, disabling fatigue which causes a substantial reduction in activity level. Other symptoms include recurrent infections, sleep disturbances, neurocognitive dysfunction or "brain fog," flu-like episodes, muscle pain and weakness, low-grade fever, sore throat, headache, swelling and tenderness of lymph nodes, and bowel disorders."
FROM DOM: Has anyone tried NADH? Write dombush@bellsouth.net. I'm feeling very well these days using things listed at www.fms-help.com/what.htm. I can keep up with a ton of work and I function very well most days. The only time I get off course is when - for unknown reasons - my sleep meds don't work and I will be totally awake and alert all night. Fortunately, this is only about once a month, if that, but it is a grim reminder to me of the health-wrecking decades I spent as a severe insomniac www.fms-help.com/insomnia.htm, which probably led to my developing FMS/CFIDS in 1982. My doc (internal medicine) says that if I could solve my sleep problem, my other problems would go away, and I believe he is right. The years of sleep deprivation wrecked what little immune function I had, even as a child.
12. PEPTIDE SHOTS FOR FIBRO
From a reader--
"I am getting my second peptide/amino acid injection on 12/21. My first injection resulted in more energy, less aches and pains and more mental clarity. I am still noticing that the 10 days before my period are still a big issue for me....the pains have lessened but my fatigue and mental exhaustion are still severe at that time of the month. I am hoping with continued treatment this will pass too. I also have Meniere's (deaf and no vestibular/balance function in my left ear) and have been diagnosed with Migraine Associated Vertigo which I have seen mentioned by others in your newsletter. I was actually born with the Menieres related issues so I do not consider it to be an actual disease rather a term given with many causes. I am only 30 but have had a lot of experience in dealing with MAV and Meniere's so I'm open to any questions from others. Fibro is a newer diagnosis for me, yet the symptoms have been present I believe since beginning menstruation. (I am trying to find the connect between the two). If anyone would like more information or has any additional information on peptide shots, my Dr's website is http://drdakos.com/ I hope to hear others' successes! See http://www.autoimmunedoctor.com/testimonials.html - Testimonials from fibro patients treated with pepside shots. Snippet from Dr. Dakos' homepage http://www.autoimmunedoctor.com/index.html: 'Treatment is done with natural materials such as amino acids and peptides found in the body and synthesized for administration. This research has been developed over several decades in Europe. During that time, thousands of treatments have been given. In essence, the immune system is put into proper balance to function correctly and overcome the disorder.'"
13. ALL OVER BODY PAIN
From a reader--
"I have severe all over body pain [result of surgeries and ongoing emotional stress]. Can readers suggest what to take in the way of medication for all over the body pain, all occuring at the same time and never letting up."
FROM DOM: Sounds like RSD, but I'm not a doc. Anyone with suggestions for this reader? Write dombush@bellsouth.net. She badly needs a doctor who will work with her for more effective pain management. RSD has been in past newsletters. Use the Google search box at the end of this page.
14. BREAKING XMRV NEWS
Reader 2--
"Five studies were published that said that XMRV was all due to contamination. These studies are very wrong. They clearly were part of a nasty political campaign to undermine the WPI: http://cfspatientadvocate.blogspot.com/2010/12/mouse-that-roared.html - FROM DOM: Here's a snippet from a comment at the end of the article: "Thank you, Chris, for calling out Evil . . . the underlying outrage for 27 years is that "they" -- whomever were the powers that be in the NIH, CDC and centers of money and power in other countries - they have NEVER taken our illness seriously. As you so well put it, we've been pawns in games of politics, power, ego, money . . . So many times I've told friends that I could handle being ill for life if I knew that at least it was taken seriously, recognized for what it is, and if serious efforts were being made to understand it. People are disabled by many other illnesses beside CFS, but only with CFS are we ignored, derided, used, sneered at . . . before XMRV, most of us, I think, would have been happy just to be respected as people who are seriously ill; I'd quipped to friends, that in the world of CFS, the AIDS slogan, "Be there for the cure" reads, "Be there for the name change." And another comment: "Thank you, Patient Advocate. You said, "For the last few months, and longer, every step has been taken to isolate the WPI and starve them to death." I know this is true, and it saddens me. I think one of the biggest problems is that patients take WPI for granted--that it will continue to do what it has done in the past. I certainly hope WPI continues to prosper, but there are no guarantees. They need financial support in order to do what they seek to do for us. If they do not receive that support, they can go down, and with it, my hopes for treatment or even cure for M.E. If we value what WPI www.wpinstitute.org is doing, we must get them financial support NOW."
Here is the WPI statement on XMRV research and PCR contamination: http://www.wpinstitute.org/WPI%20statement%20Dec%202010%20Contamination%20Issue.pdf. Here are two really good points:
1. The 'studies' did not find mouse contamination in the controls, only the samples from the sick patients. If it was contamination in a lab, the 'contamination' would have been present in all the samples, not just those from the cfs patients. Even these nay sayers are not claiming to have found any contamination in the controls.
15. MINIMUM WAGE SHEPHERDS
www.fms-help.com/Christmas.htm - Just think! This Christmas season is not about us - it's about Him! That sure takes the pressure off of our frantic holiday activities. And....for those who are having a horrid time right now due to sickness, bereavement, family troubles, stress, hospitalization, divorce, bankruptcy, etc. - Jesus remains the same - He still loves us! Jesus came to earth to make atonement for our sins so that we could have fellowship with God, holy and righteous, both now and in the life to come.
"We are ambassadors for Christ, as though God were pleading through us: we implore you on Christ’s behalf, be reconciled to God. For He made Him who knew no sin to be sin for us, that we might become the righteousness of God in Him." 2 Corinthians 5:20-21.
I include below the story of the lowly "minimum-wage" shepherds, whom God chose to tell the good news to FIRST! Can you imagine being out there in the fields during a routine night watching sheep when suddenly this amazing thing happens??! But it was the "fullness of time" on God's time clock! "When the fullness of the time was come, God sent forth his Son, made of a woman, made under the law, To redeem them that were under the law, that we might receive the adoption of sons." Galatians 4:4,5.
This is how it happened....
Luke 2:1-20 - "And it came to pass in those days that a decree went out from Caesar Augustus that all the world should be registered. This census first took place while Quirinius was governing Syria. So all went to be registered, everyone to his own city. Joseph also went up from Galilee, out of the city of Nazareth, into Judea, to the city of David, which is called Bethlehem, because he was of the house and lineage of David, to be registered with Mary, his betrothed wife, who was with child. So it was, that while they were there, the days were completed for her to be delivered. And she brought forth her firstborn Son, and wrapped Him in swaddling cloths, and laid Him in a manger, because there was no room for them in the inn. Glory in the Highest. Now there were in the same country shepherds living out in the fields, keeping watch over their flock by night. And behold, an angel of the Lord stood before them, and the glory of the Lord shone around them, and they were greatly afraid. Then the angel said to them, “Do not be afraid, for behold, I bring you good tidings of great joy which will be to all people. For there is born to you this day in the city of David a Savior, who is Christ the Lord. And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger.' And suddenly there was with the angel a multitude of the heavenly host praising God and saying: 'Glory to God in the highest, And on earth peace, goodwill toward men!' So it was, when the angels had gone away from them into heaven, that the shepherds said to one another, 'Let us now go to Bethlehem and see this thing that has come to pass, which the Lord has made known to us.' And they came with haste and found Mary and Joseph, and the Babe lying in a manger. Now when they had seen Him, they made widely known the saying which was told them concerning this Child. And all those who heard it marveled at those things which were told them by the shepherds. But Mary kept all these things and pondered them in her heart. Then the shepherds returned, glorifying and praising God for all the things that they had heard and seen, as it was told them."
Many years ago when the boys were young, we were putting up our Christmas tree. We had piles of tinsel, ornaments, lights, storage boxes, etc. all over the living room. The final touch was to put our manger scene on top of the TV - but we couldn't find the tiny baby Jesus figurine. Finally, young Steven blurted out:
"Baby Jesus is lost in the Christmas decorations!!!"
I just had to chuckle at the spiritual profoundness of his statement! It is now a favorite Christmas memory!
Merry Christmas to all!
Dominie Bush
100 Tips for Coping
with Fibromyalgia & Insomnia
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
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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.
