Dom's FMS/CFIDS Newsletter
January 17, 2011
20 TOPICS in this issue. Don't miss the PINK 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 wanted you to know that your page www.fms-help.com/marriage.htm probably saved my marriage today. Thank you very much for taking the time to post those....the wisdom helped me today."
2. ANTIRETROVIRALS FOR CFS
From a reader--
Click here: HOPE FOR FM AND CFIDS SUFFERERS: New antiretroviral findings to be presented January 17th - New antiretroviral findings to be presented January 17, 2011: New findings will be presented by Dr. Judy Mikovits on January 17th, at a medical conference in Santa Rosa titled "The XMRV Retrovirus and its association with cancer and neuroinflammatory diseases: The latest on research, detection, and treatment". Also, findings with antiretrovirals will be presented: the good news: almost all CFS patients showed remarkable improvements after receiving antiretrovirals - the group that received Viread and Isentress faired out best - probably owing to some of AZT's toxic side effects, the group given AZT had higher fatigue scores than those receiving Viread and Isentress. Dr. Deckoff Jones, and her daughter report that they are 75-80% better at this time. http://sfmedicalsociety.wordpress.com/2011/01/07/upcoming-talk-the-xmrv-retrovirus-and-its-association-with-cancer-and-neuroinflammatory-diseases-the-latest-on-research-testing-and-treatment/
3. CAR FATIGUE
From a reader--
"I get very sleepy in
cars, especially on my ride home. I am fine leaving work. I suspect, and I may
be wrong, that it has to do with breathing in:
a) all the chemicals either
in the car - newer cars loaded with chemicals.new car smell? toxic
chemicals.
b) mold in the car- old cars get it, spilled food etc- this can be
worse than chemicals.
c) exhaust and fumes from other cars on the
road."
4. IPADS & LAPTOPS USED AT NIGHT DISRUPT SLEEP PATTERNS
http://articles.mercola.com/sites/articles/archive/2011/01/10/trouble-sleeping-caused-by-glowing-gadgets.aspx - Fascinating article for anyone with insomnia!
5. PYRROLE DISORDER (PYROLURIA)
From a reader--
http://healthy-family.org/caryn/63/why-am-i-so-edgy-learn-about-pyrrole-disorder-pyroluria
http://www.nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria - Pyroluria (originally known as malvaria) is a genetic abnormality in hemoglobin synthesis resulting in a deficiency of zinc and vitamin B6.
6. WHEN YOUR MARRIAGE IS ROCKY
From a reader--
http://femininityrevisited.blogspot.com/
Let's face it - we all have "those times".
Those
tough times when you're wondering....
"Why do I always have to be the one to give in
this marriage?!?!"
When you're fuming!!!!!
You're so mad you
could just ________________________________!
You're so hurt you
cry.
I found a great resource for us during these times.
Actually, I'll be honest.
I was searching Google because I am
currently in one of those times.
This link made me remember Whom I serve. And ultimately, it isn't my husband.
Even if you only have a few minutes, this is worth a peek.
Short and sweet.
http://www.fms-help.com/marriage.htm
Welcome to
www.survivingmold.com!
After four years of preparation, the book Surviving Mold, by Ritchie C.
Shoemaker, MD, is finally published. This website is dedicated to becoming a
resource for all aspects of illness acquired from exposure to the interior
environment of water-damaged buildings (WDB).
If you have read the
Epilogue to Surviving Mold, you will know that Paul Taylor would not back
down to the claims of the Roswell Independent School district that Goddard High
School was a safe place for his daughter, Paige. Countless environmental studies
proved the subterranean areas of the school had dangerous microbes, including
fungi. He sued the school district to demand not money, but a guarantee that the
building was safe for all, including Paige. Time passed; the request for an
injunction was denied.
Meanwhile Paige was being treated by Dr.
Shoemaker. When she started using newer therapies, Paige has returned from being
bedridden to preparing to go to college. Her promising sports career is back on
track. Paul and his wife vowed that no one else should have to go through what
happened to Paige.
Survivingmold.com is the
result. We only began December 15, 2010, and already there are several hundred
people who have signed up for the newsletter. The VCS test, a vital part of the
diagnostic tests, will be online in just a few days. A thorough library of Dr.
Shoemaker’s presentations extending back to 2002 will be available this week.
Talk about a walk through history!
We soon will have the library up with
hundreds of academic publications ready to review online. If you need access now
to the most rigorous discussion of mold illness published yet, click on the link to the Expert Report of Treating
Physicians regarding illness acquired following exposure to the interior
environment of WDB that was first published July 27, 2010 by Policyholders of
America. Eventually the library will be expansive.
All in due time.
We will also begin to post links to important legal
cases from across the country. If you are in litigation and could use some
support we have resources that could make the difference to your case.
Beginning next month, we will have a Damp Building Round Table featuring
Carl Grimes, Greg Weatherman and Dr. Shoemaker. There won’t be too many topics
related to indoor air quality that they won’t address!
We welcome your
suggestions for features and improvements. Yes, we are young. And yes, we are
going to make a difference. Come share experiences with us!
8. IRENEW BRACELET UPDATE
From a reader--
"Update on the irenew bracelet: Still the same...only a little more strength on my knees. That's all .Something is better than nothing."
FROM DOM: I saw these at Wal-Mart this weekend. They were $19.99. Anyone care to comment? Write dombush@bellsouth.net.
9. MENOPAUSE & FIBROMYALGIA
From a reader--
"Since I have entered menopause, I feel absolutely worst. Can you ask your readers about this....what helps them? Honestly I feel bipolor with the mood swings."
FROM DOM: Try a search for "menopause" in my newsletters using the Google search box at the end of this page. Also, if you have suggestions, write dombush@bellsouth.net.
10. TO THE READER NEEDING ANSWERS
From a reader--
"I would recommend a website called Know the Cause. Doug Kaufmann has a small number of advertisers he handpicked using his stringent standards. And they will all talk to you and help you try different products, and combinations of products. Also in his resource section he also has a list of his show’s guests – their sites are usually full of good info."
FROM DOM: Years ago, I spoke with Doug Kaufman on the phone. Nice guy. He has a great website about how fungus causes diseases and has authored many books. One of them is called "The Fungus Link to Health Problems."
11. RESURRECTION PAINTING
FROM DOM: This is amazing! The 12' x40 ' painting will be displayed in a Dallas museum. Must see video: http://downloads.cbn.com/cbnplayer/cbnPlayer.swf?s=/vod/MW131v2_WS - turn sound on!
12. MEN WITH FIBRO
FROM DOM: I received this poignant and extremely well-spoken letter from a male reader with fibro. I'm sure most of my readers can relate to this person's experience--
"Thank you for your site www.fms-help.com and for sharing your
life with those of us affected in the same way. For those of us
who are depended on to provide, this creates a whole different
dimension and strangely often those affected are female (meaning finding a way
to return to work is non-optional and I seem to have encountered many women who
have found their way back to health by taking a sabbatical or withdrawing from
work). I suppose there is an unwritten societal moray for
men to just tough it out but when this drives you to being
bed-ridden for a few months there is not much oomph left in the
system. The financial collapse that follows
the health collapse creates a stress wheel that seems to be its own perpetual
motion device. I have made it from the bed to the desk and
can work from home and am hoping to be able to make it the rest of the way back
to an office environment. Any personal discussion beyond half an
hour produces double vision and the inevitable following physiological
collapses.
If I could pick a single topic for the men’s forum it would be how to handle setting the expectations of those outside your immediate family without having to provide a long explanation. Surely someone has a better grip on this than I do. I realize that part of my problem comes from “appearing normal” when need be yet in many cases I don’t have any other option. We need a simple explanation."
FROM DOM: Everything this reader has shared and experienced is so very true! Men with fibro do face more social stigma than women. A list of occupations that my readers had when FMS/CFIDS struck is at www.fms-help.com/occupations.htm. To read more stories of male readers with fibro, see www.fms-help.com/men.htm. I hope my 100 tips for coping www.fms-help.com/tips.htm and list of helpful things I use www.fms-help.com/what.htm will encourage other sufferers and give them some useful ideas to try, although we are all unique in our responses to meds, supplements, and lifestyle helps.
13. CELL PHONE PHOTOS - MAJOR DANGER!
From a reader--
"Every photo you take with your cell phone has built in GPS coordinates info on the photo. When you post them online anyone can then use those coordinates to find the location where that photo was taken. They can find your house, work, school, kids, etc. BEWARE!!! Watch this ABC news video: http://abclocal.go.com/wabc/video?id=7621105&syndicate=syndicate§ion."
From a relative--
"Most smart phones, like my BlackBerry, you have to enable geotagging for it to associate coordinates with photos because it is disabled by default."
14. SECONDARY GAINS TO ILLNESS?
From a reader--
http://cinderbridge.blogspot.com/2011/01/secondary-gains.html - Snippet: "Patients with psychologized chronic illnesses will tell you that the advantages of being sick are highly overrated. They miss their careers. They miss the financial stability work gave them. Rather than attracting sympathy, they discover that most of their friends disbelieve and disappear. This suggests that if we are to accept secondary gains as indirect evidence, we should consider the other side as well. What are the secondary gains of assigning a psychological diagnosis to a biomedical disease?"
FROM DOM: Many excellent points made in this article about so-called "psychosomatic" illness!
15. XMRV NEWS
From a reader--
http://niceguidelines.blogspot.com/2011/01/xmrv-science-may-be-ugly-but-patients.html - Patients don't make antibodies to lab contaminants!
16. MENTALLY ILL MOTHER
FROM DOM: One of my all-time favorite autobiographies is "Stormie" by actress, author and speaker, Stormie Omartian. You can read a little about Stormie's history - being raised by mother who kept her locked in a closet during much of her early childhood: http://www.stormieomartian.com/stormiesstory.html. For anyone who has been the victim of childhood abuse, I highly recommend reading "Stormie" - I couldn't put it down! http://www.amazon.com/Stormie-Story-Forgiveness-Healing-Omartian/dp/1565078322/ref=sr_1_1?s=books&ie=UTF8&qid=1295202562&sr=1-1.
17. METAL RODS CAN CAUSE FMS/CFIDS SYMPTOMS
From a reader--
"I have been interested in learning about the Melisa organization www.melisa.org as the metal rods used in my [back] surgery can cause an allergic reaction that mimics my [FMS/CFIDS] symptoms with striking similarity."
FROM DOM: I have reported on titanium rods in past newsletters. Search at www.fms-help.com/newsletters.htm. Also visit www.melisa.org to learn more about allergies to heavy metals, which produce FMS/CFIDS symptoms in many people. Snippet: "MELISA® is the world’s leading test for hypersensitivity to metals. It is used worldwide by dentists and doctors to determine whether a patient is intolerant to materials commonly used in dental restorations or bodily implants. New applications of the test include diagnosis of Lyme disease (Borrelia) and allergy to gluten and molds."
18. MOLDY BUILDINGS
From a reader--
"I found an article from you about when you worked in a sick building with mold www.fms-help.com/mold.htm. I think I work in one AND have it in the house I've lived in for 2 years! I currently have every symptom you described having, and I am sooooooooooo tired I can hardly have the energy to do anything. I know I need to get rid of all possesions as they most likely also have spores/mycotoxins, and I do NOT want to cross-contaminate! I am writing to ask about the things you said your husband told you to try that finally helped you regain your health. In the article, you speak of immune powder and CSM, but you also say your husband recommended some things that really helped. I wondered if you would please share that info with me as I feel awful! Also, if you are still having problems, I have also read about "fungal balls" that can somehow get in the lung/chest cavity. Perhaps a check 4 that? Also, did you throw out everything you had used while working in the sick building? I hear you can cross-contaminate. Your school things? Your clothes?"
FROM DOM: Number one is to GET OUT OF THE MOLDY BUILDINGS! This is easier said than done, especially when this reader's workplace AND home are affected. I'll be happy to send anyone the names of the things that helped me out of this pit. Please write dombush@bellsouth.net. Also, visit www.survivingmold.com, Dr. Ritchie Shoemaker's site (see Topic #7 above).
19. UNDERGROUND CHINESE CHURCH GOES PUBLIC
From a friend--
Sunday, January 16, 2011- Video - 5:04 - http://www.cbn.com/cbnnews/world/2010/December/Underground-Chinese-Church-Goes-Public/ - This happened in Beijing. God bless them!
20. DOM'S UPDATE
I continue to do well, managing my FMS/CFIDS with meds, supplements and lifestyle helps listed at www.fms-help.com/what.htm. I am able to work www.fms-help.com/students.htm and to play the piano/organ for my church.
BTW, my normally reliable mail merge program has been on the blink, so you may not have been receiving my newsletters lately. However, they are all archived at www.fms-help.com/newsletters.htm, if you want to check them out!
'Til next time,
Dominie Bush
100 Tips for Coping with Fibromyalgia &
Insomnia
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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.
