DOM'S NEWSLETTER
March 12, 2008
A compassionate, informative newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (ME)
25 TOPICS (scroll down the page to read thearticles)
1. READERS WRITE
2. FMS/CFS SURVEY
3. GARTH NICHOLSON
4. DOCTOR DATABASE
5. FIBROMYALGIA CAUSED BY MYCOPLASMA INFECTION
6. NEW FLUORESCENT LIGHT BULBS
7. SED RATE & TRAMADOL
8. VACCINES
9. DOM'S SUPPORT GROUP
10. THYROID DISTURBANCE & FIBROMYALGIA
11. "SLEEP SO GOOD"
12. IMMUNE SYSTEM IN THE GUT - MILITARY VACCINES
13. MERCURY REMOVAL
14. RIBOSE
15. FIBROMYALGIA IS NOT A RHEUMATIC DISEASE ANYMORE
16. WHY WE DON'T ABSORB NUTRIENTS FROM OUR FOOD - GLUTEN?
17. HEPARIN RECALLED
18. TINNITUS & CRANIO-SACRAL THERAPY
19. JUVENILE FIBROMYALGIA & SCHOOL
20. LIPITOR
21. SWOLLEN GLANDS
22. MEN WITH FIBROMYALGIA
23. ELECTROSENSITIVITY
24. FROM A FIBRO NEWBIE
25. DOM'S UPDATE - MY DREAM
1. READERS WRITE
"I am struggling with severely debilitating fatigue to the point that I now am questioning my ability to continue working. Just to hear you list your symptoms and all of the help on this site has been so comforting, as I have often questioned whether or not I am just going crazy."
"Your newsletter is fabulous and you have been an inspiration to many who have lost hope and the possiblity of ever living a normal life again."
"I just found your web site and I can't believe all the valuable free information."
"I love your newsletter and your site!"
"I thoroughly enjoyed your article(s) on FM and CFS. It was the most interesting of all that I have read in the past 10 years, including the books. Perhaps it is because you yourself have it. I just found it to be so real."
"Your newsletters bring sunshine in my days."
"I'm reading your awesome site www.fms-help.com again. You really cover everything."
"What you are doing is scriptural. I just read 2 Corinthians 1:4-7 and that is exactly what you are practicing. Comforting those who are in trouble and hurting!! Bless you!!"
"The only word I have for this disease is CRAZY!!!!!"
"Your site is a treasure trove of information for both men and women with fibro."
2. FMS/CFS SURVEY
3. GARTH NICHOLSON
From a reader--
"I have been following many, if not most, of Professor Garth Nicholson's protocols and I am getting better, and am back
to work again. Most day's I am back to 75-80% energy and
coping levels, after several years of most days being at 20-25%.
I spent five years researching the subject before I
found Prof. Nicholson. If you haven't already read his and
Nancy's book, Project Day Lilly, you really need to."
4. DOCTOR DATABASE
5. FIBROMYALGIA CAUSED BY MYCOPLASMA INFECTION
From a reader--
6. NEW FLUORESCENT LIGHT BULBS
Reader 1--
"I have problems with fluorescent light bulbs and am worried that regular bulbs will be banned. [Incandescent bulbs are being banned in 2012, I have heard.] I'm aware of problems when I'm in department stores and I know there is fluorescent lighting. I may start to sweat and feel nervous and agitated. After I heard a radio report on NPR about infectious diseases I've been curious about it. This report mentioned that Lyme disease and other infectious come alive during exposure to light which disturbs me. Could there be some underlying infection that we have which is sensitive to the light?"
Wow! Great question! Send comments to dombush@bellsouth.net. I do know that I get cold sores when exposed to too much sun. Could it be that the flickering light of fluorescent bulbs affects our pineal and other brain glands, which have been adversely affected by viruses or mycoplasma, causing us to have problems with sleep, sweating, depression, headaches, pain, etc. See my article on the danger of the new fluorescent light bulbs at www.fms-help.com/030108.htm - Topic 23.
Reader 2--
"Flickering, or pulses, in fluorescent bulbs trigger migraines and absolutely guarantee some bedfast days in CFIDS, GWI, and in some case, FMS. Regular bulbs are being banned, just like regular TV without HDTV connections by the year 2009. In my opinion, there is no rhyme or reason to that particular mindset. The problem with lights is neurological as much as it is sensitivity to metals within the lightbulbs. And I believe, in an illness as serious as ours, that if the eyes are not replenished enough with essential fatty acids, that we will suffer the consequences of not being able to read, sew, or work on the computer. Essential fatty acids are not just fish oils. They include Oregano oil complex, Borage oil, flax seed oil, Vitamin E oils mixed with A and C, etc. and ad nauseam. I believe that fluorescent lights in conjunction with computer screen pulsing cause us to take a health nosedive. I have been advised by all of my doctors to buy either a sunlight lamp or head-band sunlight lamp, or to spend more time outside, because my migraines have become unmanageable. Please take caution in interpretting my symptoms and my therapy, because I have received so many vaccines, military-grade and questionable cocktail vaccines, that my situation might not apply to everyone. Too much metals from too many vaccines cause migraines beyond management. Metals go to fatty tissues of the brain, and STAY there till we develop ADD, Alzheimers, MS, or craziness that has yet to be established as related to fatiguing illnesses, and dementia. I wear tinted prescription glasses or my Desert Storm prescription sunglasses (provided by the government in exchange for my service during a war) everywhere I go. You might want to consider the same thing. It really cuts down on the pulses and ensuing migraines that might cut your shopping trip short. Besides, just think how COOL you look with those tinted lenses: Just like all the musicians and most of Hollywood. Uh-huh? Oh, yeah!"
7. SED RATE & TRAMADOL
"SED: ABOUT 6 MONTHS AGO, A PERIODIC BLOOD TEST, REVEALED SED RATE TO BE 95, AS A RESULT MY DOCTOR PRESCRIBED PREDNISONE FOR A SHORT PERIOD OF TIME. IN 3 WEEKS ANOTHER BLOOD TEST REVEALED MY SED RATE TO BE 25. NO MORE TROUBLE WITH SED SINCE. I'M NOW ON DECREASING DOSE OF PREDNISONE.
ULTRAM (TRAMADOL): NEW PAIN MED - AT THE BEGINNING OF FEBRUARY, 2008 MY RHEUMATOLOGIST SUGGESTED I TRY A NEW MED TRAMADOL ER I'VE BEEN ON THE TRAM SINCE AND IT HAS PROV EN TO BE A TREMENDOUS PAIN RELIEVER. TRAMADOL ER IS FOR PEOPLE SUFFERING FROM ROUND-THE-CLOCK, 24 HOUR PAIN. FIBROMITES SHOULD GOOGLE TRAMADOL ER FOR INFORMATION ON ULTRAM AND ASK THEIR DOCTOR ABOUT TRYING IT. THEY'LL BE GLAD THEY DID. Responses to this can be sent to me (Gloria) at gloriab@netzero.net."
And a response from a reader--
"Prednisone is a steroid. I almost died from that. Ultram caused me chest pain so the old story goes we are not a one size fits all. The normal Sedrate is 0-20. But 95 is a danger level. My highest was 80 and that is not good either."
8. VACCINES
From a reader--
"I received a newsletter from a website http://osteomed2.com/index.html written by an M.D., Dr. Sherri Tenpenny. She's got a new book coming out in April, "Saying No to Vaccines". I lost my livelihood due to military-grade vaccines and my father died within hours of receiving the Zostavax vaccine. Dr. Tenpenny is one of the fighters on the American Association for Health Freedom and Coalition Against Mandatory Vaccines. She is also providing me guidance on how to pursue Vaccine Adverse Event Reporting to the CDC, and reporting to the Vaccine Injury Compensation Program. And she is interested in my civil suit against the pharmacy and pharmacist that administered my father's vaccine without questioning his vaccine history and his controlled health conditions."
And then I just got this info from another newsletter--
8 More Deaths Caused by Gardasil, Bringing Total Number To 11
NewsTarget -- by Leslee Dru Browning
“Why inject young girls and boys with a dangerous and life threatening vaccine when the herb Pau d’ Arco has been proven to both prevent and cure HPV? On October 8, 2007, Judicial Watch Released Analysis Of FDA Data Claiming Gardasil Vaccination Can Lead To Serious Health Problems, Death According to Judicial Watch, 3,461 complaints about Gardasil have been filed with FDA’s Vaccine Adverse Event Report System since its approval last year, and 11 women died after exposure to the vaccine. That is an additional 8 deaths since the last report of 3. The complaints about Gardasil have more than doubled compared to the original 1,637 adverse events reported by Alliance for Human Research Protection.”
9. DOM'S SUPPORT GROUP
If you are one of my regular newsletter readers, you are cordially invited to join my support group on Yahoo at http://health.groups.yahoo.com/group/dominie. There are about 240 readers using the message board. Sign up for Special Notices or Web Only to avoid getting a lot of email. You can also search the message database for topics that have been, or are being, discussed. You will find lots of support and info from other readers with fibromyalgia, chronic fatigue and immune dysfunction syndrome and M.E.
10. THYROID DISTURBANCE & FIBROMYALGIA
11. "SLEEP SO GOOD"
12. IMMUNE SYSTEM IN THE GUT - MILITARY VACCINES
From a reader--
"Most of the time, vaccines do destroy the gut. And 80 percent of the immune system is the gut. The metals in the vaccines are the worst because the cells are overwhelmed, deprived of oxygen due to too much metal all at the same time. My gastroenterologist explained to me that the entire gut moves on streams of messages from the brain, like a gentle waterfall. If those messages are interrupted, it is difficult to ever get the message pulses back to normal. You might figure, each of us soldiers probably received 15 or 16 vaccines at a time, and then the ones still able to deploy were dropped off into a battlefield blasted with even more heavy metal at least since 1985. And others that remained stateside, were blasted by the waves of contaminated equipment returning on ships and by air. The first job was to decontaminate all equipment so that it could be re-issued to the units that used the equipment. No one was told to use respirators or rubber gloves, an absolute requirement for dealing with nuclear waste, depleted uranium. We have lost some soldiers just trying to get some sleep by mixing sleeping pills with alcohol. We have lost even more by suicide, partially driven by sleep deprivation. When my physician first met me, he said that my sleep was the basic problem. Until I could end the sleep deprivation, my health would continue to decline. I didn't get any sleep till I got disability and retired. Now I sleep when I want to sleep. My gut was also damaged by parasites that no physician would treat till more than 7 years after the fact. So, I am sure I have scar tissue where parasite infestation was most prominent, at each duodenum or sphincter (we have five of those). I also have leaky gut syndrome, associated with CFIDS, triggered by vaccines."
13. MERCURY REMOVAL
From a reader--
"I have a comment about the mercury removal Topic #2 www.fms-help.com/030108.htm. Maybe people should get a blood test for mercury levels prior to making the decision to have the mercury removed. While none of us wants to have the exposure to mercury, it can be toxic & painful to have it removed. It also exposes us to increased toxins during the removal process. I have had some of my mercury fillings removed. There are certain precautions such as taking chlorella or cilantro & making sure to use a breathing filter & dental dam while the removal is taking place. It's also good to proceed very slowly with the removal process & have only 1 or 2 teeth done every few months. I had a test done for mercury & my levels were not excessively high. So, I may hold off on any further removal since it doesn't seem to be a big issue for me. It's expensive & alot to go through if it's not a big problem. It's easier to get a mercury level test done first to check to make sure that it's an issue for you before going through the procedure."
14. RIBOSE
From a reader--
"I am wondering about Ribose www.fms-help.com/030108.htm. My Homeopath told me two days ago to throw it out because it contains perservatives and they are harmful to the body. She tested it on her Vega machine she uses to test acupuncure points and said do not use it. She is light years ahead of medical doctors and keeps virus, bacteria, fungus, parasites, etc. cleaned from my body with homeopathic remedies. I wish all of you had acces to her here in Ontario, Canada. The only drawback, of course, is I have to pay her out of my pocket and insurance plan does not cover. She tests your organs to see how all working. I have been going for 15 years and she has been a life saver for me."
15. FIBROMYALGIA IS NOT A RHEUMATIC DISEASE ANYMORE
(It never was, in my opinion.)
16. WHY WE DON'T ABSORB NUTRIENTS FROM OUR FOOD - GLUTEN?
From a reader--
"I had been having horrible trouble with IBS along with other debilitating symptoms of my fibro.....mostly total exhaustion!...feeling like I was constantly recovering from the flu, brain fog, pain, etc.
I decided to give the gluten free diet a try...hoping it would alleviate some of my symptoms of IBS. As with many others, in my search for a "healthy diet", I had been using a lot of whole grains, whole wheat homemade bread, whole wheat pasta, etc. On the gluten-free diet, I started feeling better.....stuck with it 2 or 3 months, then decided to 'cheat'!!! Within a couple hours, I was in the bathroom with SERIOUS abdominal pain and diarrhea! And I've had the same reaction 3 different times. So I've QUIT CHEATING!
My cousin who also has fibro, and is also trying the diet, heard from her physician that it takes 120 days to totally get gluten out of your system.
I am thrilled to report that I have reached that point and since then, have just felt sooooooo much better. My IBS is gone, except when I rarely miss wheat in something I've eaten, my fibro pain is much better, as is my energy! My theory is, since gluten intolerance makes the villae in your intestines swell so that you cannot receive nourishment from your food, and that so many of us find improvement when on massive nutrition supplements, that there could be a connection there. I have found that since my 120 days, I have been able to cut down on the amount of supplements that I take and am still feeling better. I am not totally well yet, but I am much improved!!
I would suggest anyone with fibro give this diet a try. At first, it was really difficult, but now Safeway, Kroegers, King Soopers, as well as stores like Whole Foods make and sell gluten free products, so you can still have your bread, pasta, etc., although I find that I don't crave it like I did in the beginning. It was tough at first. Once in awhile I feel the need for a sandwich and will use my gluten free bread, or spaghetti or macaroni once in a while. But most of the time I am just fine without it.
I had asked my doctor years back if I could be gluten intolerant or have celiac disease, and he poo-pooed the idea as silly and said that NO ONE has celiac disease. It is also fairly tough to diagnose, so I would suggest folks just try the diet...in 4 months you will know!"
Wow. This is SOOOO interesting! I am especially intrigued by this reader's theory about why fibromites and/or people with gluten intolerance need such high doses of nutritional supplements. Could be the intestinal tract is not absorbing nutrients due to swelling. Very possibly true!!! (Also, about her doctor, just shows we have to be our own doctor sometimes. Thank God for the internet where we can do our own research! See my good doctors / bad doctors page at www.fms-help.com/doctors.htm.)
17. HEPARIN RECALLED
From the message board--
"My doctor told me just today that all Heparin Sodium was re-called. I told him about the FDA inspection that was botched on the first Chinese plant. A proper inspection by the FDA resulted in the full re-call. And my doc told me that all of his patients on heparin were having reactions similar to mine. Heparin is essential for heart patients, so no doubt another manufacturer probably in the States this time, will be contracted to fulfill the shortage. Otherwise, a whole lot of heart patients are going to die very quickly."
18. TINNITUS & CRANIO-SACRAL THERAPY
From a reader--
"Regarding Tinnitus, which I have luckily never suffered from but know
plenty of people who do, I have heard from reliable sources that one of
the only things that really works for Tinnitus is Cranio-Sacral therapy.
My sister is a trained cranio-sacral therapist (in the USA) and says
that it is really really good for alleviating it."
19. JUVENILE FIBROMYALGIA & SCHOOL
Excellent article by Shari Ferbert of AAFTER--
Shari also says,
"My long story short: I have FMS and probable CFS. My daughter was diagnosed as “developing fibro” at 10 and diagnosed with fibro at 16. She has been having much difficulty in school, many absences, fatigue, cognitive issues (fibrofog, but diagnosed as ADHD). Now at 18 and in her senior year, we finally learned about this 504 through the school nurse. We got a letter from her rheumatologist documenting her diagnosis and the effects it has on her ability to perform at school. We followed up with a lot of other forms and a meeting with school personnel, and she is now on a 504 program. It allows her some much needed help to level the playing field with healthy kids. She gets extra time to turn in make up work, she has longer time to take tests, she has teachers help her break down projects into smaller more manageable pieces, etc. It is too bad we didn’t learn about this earlier, as she has been struggling since the 5th grade. Since this has affected me personally, I have collected some articles about FMS/CFS in children. Not all of them are available on-line, but I can mail them to you if you provide me with your snail mail address.
Also, AFFTER dedicated a whole section about juvenile fibromyalgia in one of our first newsletters, which included articles written by doctors, studies on JFMS, and an article written by my daughter herself (at age 10). If you are interested, send me your snail mail address off the group to shari23@comcast.net. There have been more recent studies done and I can send to you some links to them later today or tomorrow.
It is so difficult to see you child suffering. Particularly I feel responsible for passing along the gene that caused her to have this problem. She also is worried that she will eventually be as bad off as I am – but that is partly what motivates me to do what I do – with hopes that I can make a small difference somehow so that she will have a better quality of life than I do if/when her fibro becomes more full blown.
I just learned that there is such a thing as a 504 plan and got into one - she could have been benefiting from that all this time. At least for her last semester in HS she is finally getting some help, but not soon enough to get into a college of her choice – not getting good enough grades…This is a topic that definitely needs more awareness.
I plan contacting schools in my area and offer to speak at PTA meetings about it. Ask for a 504 program, go the website www.wrightslaw.com. There is a lot of good info there. Basically, it is a plan that the school works out with the parents of a child with a disabling illness. It falls under the disability law, that enables children with disabilities to have the physical help they need to level the playing field with those who are not disabled. With FMS, one of the disabilities involves cognitive issues, so we went over what they can do to help her remember assignments, etc. Another issue is attendance – she misses a lot of school. So they extended deadlines to make up missed assignments and even excuse her from some less important ones. The teachers make themselves available to her for preparing for test and reviewing material that she doesn’t understand." See my page about children and teens with FMS/CFIDS www.fms-help.com/teens.htm - this awful illness curtails the normal activities of their young lives, interfering with school and social activities.
20. LIPITOR
From a reader--
"Yesterday I also found that my symptoms are aggravated because I have been taking Lipitor for the past 6 months!!!!!"
21. SWOLLEN GLANDS
"Two weekends ago I got these sore swollen glands in my throat as I got home on Friday evening,
and as I got to work yesterday they came up again. No other symptoms,
just sore swollen glands! (and in my groin a bit too, on the side where
the thighs start). Can you please ask readers if they get this too from
exhaustion? I counteracted this with doses of Vit C, echinacea and Zinc
and double doses of my faithful Vita-Thion, which seems to have helped.
But the nights are not long enough to rid me of my exhaustion. - Lara"
22. MEN WITH FIBROMYALGIA
You guys are not alone! Check out these sites!
23. ELECTROSENSITIVITY
Are computers, TV's and cell phones making our health worse? Who knows?? I already had severe FMS/CFIDS for 14 years BEFORE getting a computer in 1996. I also was never a big TV watcher. Any thoughts? Write dombush@bellsouth.net.
24. FROM A FIBRO NEWBIE
"I didn't realize what an overwhelming task it would be to combat this condition! I honestly thought that I would just get better from more sleep and eating better ... and that has helped, but I suspect that there's a lot more to this ... so thank you for offering your insights and of course, your personal experience [see my 100 tips at www.fms-help.com/tips.htm]. I am wondering, do you have days when you actually feel like your normal self? Now that I have this condition, I feel like everything just hurts all the more and that I am extremely sensitive & aware of changes in my body. I am off to see the doctor today because of a sinus infection. I have never had sinus problems until now. But the headaches are very painful and unrelenting, so I'm going to have the doctor check it out." Yes, I do have days when I feel normal, but they are easily eradicated by becoming overstressed. A list of things that help me function and feel comfortable is at www.fms-help.com/what.htm.
25. DOM'S UPDATE - my dream
A few nights ago I dreamt that I was in a group of people being given blood tests. The docs took just a tiny drop of blood from me and identified 4 major illnesses, including cancer. Strangely, in my dream I was ECSTATIC about this discovery! First, I knew finally(!) that there was an explanation for why I had been feeling so bad - EVERYONE would KNOW that I had TRULY been sick, and certainly I wouldn't have to explain "cancer" to anyone! Secondly, I was thrilled because my life's journey was drawing to a close and I was nearer to heaven! I woke up with the words of an old hymn going through my mind, "And I shall see Him face to face..."
OK! Now for all you shrinks out there, I think my dream shows how subconsciously I must be LONGING FOR UNDERSTANDING from others about this mysterious illness (FMS/CFIDS) that I've had since June 1982 www.fms-help.com/fibro.htm. (Maybe I'm getting tired of trying to explain it to folks!)
My husband said that my dream must have been caused by my sleep meds, but I didn't do anything differently that night. Normally I dream about things that I can laugh about the next morning (funny things), or about people in social situations (chick flicks), or I don't remember what I dreamt.
I think that most of my readers can identify with this desperate desire to be understood! (See "My Name is Fibromyalgia" www.fms-help.com/mnif.htm. The only people who understand FMS/CFIDS/ME are those of us who have it - or, if we are fortunate, maybe a supportive spouse or family member).
Today I had a phone call from a friend with fibro who wanted me to sing for a gathering she was in charge of. She said, "I know you have to go day to day...." Wow! It was like FALLING ON A SOFT PILLOW! What a luxury to have someone understand that I can't commit to events that far in advance - and I didn't have to make excuses to for my inability to perform - and no one was telling me it was "in my head" or that I should "fight it," etc.
I have had 3-4 good days this week! Teaching piano has been a delight www.fms-help.com/students.htm, because I haven't been miserable and almost collasping (secretly) with fatigue and exhaustion. If only every day were like these past few days, I would be on Cloud 9! A list of things I currently use is at www.fms-help.com/what.htm. This is what helps me, although each of us is different. I have to be more diligent about my health now that I am getting older (56). I'm not in my 20's anymore.....ha! I have to take my meds and supplements at the right times and also keep my stress levels to a minimum. This is easier said than done....and I have had to tell a lot of people "NO" when I'd rather say "YES!"
I have also been trying to think a lot more positive lately. For instance, I have gotten a lot of new students recently. At first it was overwhelming and I was stressing out, but then I remembered that I had been praying for more students because of our financial needs, so I reasoned that if God sent them, He would give me strength to cope with my increased workload. So I started to remind myself of affirmative scriptures like, "I can do all things through Christ who strengthens me." So far, so good....I just have to trust God more with our financial stresses and my ability - or inability - to keep working. (My husband says I'm disabled and won't admit it. I am thankful that he is soooo supportive and understanding. If he weren't, I couldn't do the work that I do for the fibro community - been online with my site www.fms-help.com since 1996).
Well, I better sign off for now! It's getting late and one of my priorities is to take my sleep meds and get to bed at a decent hour.
I just want to close by saying how much I care about each of my readers and send everyone my best! I pray for all of us who have this debilitating affliction. Looking on the bright side, I wouldn't have met some of the finest folks in the world (my readers!) if I didn't have FMS/CFIDS - so there's a silver lining to every cloud!
Yours truly,
Dominie
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.