Dom's Newsletter

December 17, 2007

A compassionate informative newsletter for people with Fibromyalgia (FMS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME).

TOPICS ARE IN PURPLE. MY COMMENTS ARE IN TEAL.

#17 HOLIDAY DEPRESSION - you are not alone

#20 10 SIGNS TO DISMISS YOUR DOCTOR - yep!

#24 DOMINIE'S SUPPORT GROUP - new message board has over 150 members

#25 DOM'S UPDATE - virus is gone - I feel good again - wahoo!

1. READERS WRITE

"Awesome website www.fms-help.com you put together, its been a big help."

"I've been reading your newsletter for years now and so much appreciate the information. Please continue your excellent work."

"I just found your newsletter, and have found it very helpful already."

"Your website helped me tremendously and I have learned so much."

"I appreciate your efforts in doing the newsletter for all of us!!"

"Your stories are a real testimony to all of us "fibromites". I've learned more from you than from any doctor or other website."

"Your website has the most information I have seen."

2. CIPRO & FLUORIDE - CAUSES OF FMS/CFIDS?

From a reader about www.fms-help.com/120307.htm--

"Click here: FIBROMYALGIA CURES - this was part of one of your newsletters and states the cause of fibro and CFS is fluoride toxicity! Very interesting! It said it is in a lot of drugs and even vitamins. It said one drug in particular may be to blaim in many women get fibro. It is Cipro, used for bladder infections. I used to get them all the time and I know I've taken Cipro. I wish I could go back and see if I had been on that just prior to getting fibro, but that's been over 10 yrs now, It would be interesting to see how many of your readers have taken that antibiotic. Please, at least warn everyone not to take Cipro. They are going to put fluoride in our water here in San Diego, starting tomorrow! Can you believe that? I'm so upset about that!"

Fluoride has been a huge health issue for the past 30 years. I hate that they are now putting it in drinking water! It will be hard to avoid! I have taken Cipro several times in my life. I am curious to go back and look if Cipro was one of the 6 antibiotics I took (one after the other during a 6 month period of time) just before the onset of CFIDS in 1987. I already had FMS for 5 years at that point.

3. LOW BODY TEMPERATURE

From a reader about whether dampness causes colds--

"I HAVE HAD A COLD LIKE VIRUS OR HALF GERM/HALF VIRUS FOR EVER I THINK. I LIVE IN THE SALT LAKE CITY VALLEY WHICH IS MOSTLY DRY - BUT I KNOW WHEN IT IS MOIST OUT - THE WIND ETC. SEEMS TO CUT THROUGH ME WORSE. BUT I DON'T THINK IT HAS MADE A BIG DIFFERENCE IN GETTING A COLD OR VIRUS. I WONDER IF OTHERS HAVE A 1/2 OR 1 DEGREE LOWER "NORMAL TEMPERATURE" THAN THE NORMAL 98.6. I ALWAYS RUN LOWER THAN NORMAL. MY BASIC THOUGHT ABOUT WHAT YOU WROTE IS I THINK MAYBE WE HAVE THIS VIRUS/GERM GOING ALL THE TIME AND A LITTLE EXTRA PROBLEM JUST BRINGS IT OUT- THEN OUR SYSTEM HAS TO FIGHT HARDER. I DON'T THINK IT EVER LEAVES ALL THE WAY. "

Yes, my body temperature is often a degree low. Maybe that's why when I get a mild temperature of 99.1, I feel quite ill. More discussion about the topic of dampness and colds will be at www.fms-help.com/damp.htm in about 2 weeks.

4. AMITRIPTYLINE, HYPOTHALAMUS, MASSAGE

Several topics in the last newsletter at www.fms-help.com/111407.htm struck a chord with a reader --

"No. 6, Dottie taking Amitriptyline..believe I saw on website that asthma, rashes, etc. caused by that drug. She might want to research that. No. 7 Sleep study....I too did study and could not believe the nurses said I was OK. No. 8 Weight gain...Dr. Teitelbaum, who had CFS and now treats patients with same, says weight gain is part of pattern because hypothalamus not working properly. No. 10 I am trying for first the hot rock massage today for back pain and soreness where the fibro points are. I find ordinary massage helps those points also as long as masseur does not go too deep. Also use hot grain packs on back for relief. I find most drugs do not help, make me nauseous, and drowsy for two days. Hardly worth it. There are Fatigue and Fibro Clinics across US but fees high. Must go to clinic for first visit and 3 phone follow ups for $1345. Most of us cannot work and difficult to come up with that and of course will probably need more visits/phone calls plus travelling to these sites."

5. MAGNESIUM, ALKALIZATION, ASPARTAME POISONING

"I am not cured but I would like to tell you some things I am trying now I went and seen a herbalist naturapath and increasing my magnesium

with a supplement. He diagnosed me as retaining water outside my cells and not having enough water in my cells, so he has got me on the magnesium and also my body is acidic and has got me on a alkaliser. I will let you know how it goes but what was nice he actually has found some stuff.. Also my cadmium levels are too high and has checked for heavy metals in my system. I will let you know how I go. but taking about 3 litres of water a day ( besides going to the toilet more often) I have noticed my voice is better earlier in the day and I do sleep better ..

I also have been pulling oil each day (go and check on net). Anyway I thought I would give u an update. I still think it's aspartame poisoning but there isn't a test for it. Also my thyroid is on the lower side of normal ( nothing outside the range) but it is something he wants to address."

All of these subjects have been addressed in previous newsletters. Use the Google search box at the end of this page to find these topics. Then use Alt-F to find the word on the page. Also, see www.fms-help.com/excitos.htm about aspartame.

6. CFS CAUSED BY A STOMACH VIRUS

From a reader--

http://www.sciencedaily.com/releases/2007/09/070913132933.htm

Other similar articles have been reported on recently in my newsletters. Use the Google search box at the end of this newsletter - type in stomach virus (or enterovirus). Then hit Alt-F to find it on the exact page.

7. GRAIN-FREE DIET HELPED DOG (PEOPLE?)

From a reader--

"No-grain foods are popular now because of how dogs ate in the wild. They, and we, are far better off without grains, but it's a hard thing to do. I love my breads and everything else that's bad for me....:-( Anyway, since my vet was stumped on why my dog kept breaking out with the sores on his ear tips, he suggested an auto-immune disease and the first thing to try was no-grains. Seems to have worked. hmmmm, should we follow suit? I just don't think I would stick to that kind of a diet even with good intentions. My vet has ankylosing spondylitis and has been on no-grain for almost 2 years now. It's the only thing he finds that helps decrease his pain....whenever he cheats, he is painful again. He is only 34 or 35 - too young for all that."

In the early 90's, I had a friend in my Ladies Bible Study class who was diagnosed with fibromyalgia. But that didn't explain her red, swollen joints. So her doc revised his diagnosis to RA (rheumatoid arthritis). But then her husband surfed the net and found out the cause of her symptoms - celiac sprue, a/k/a gluten intolerance! She went on a gluten free diet - not easy to do with 3 kids. Her symptoms abated, but she became extremely thin.

8. COLDS

Reader 1--

"Have you been trying your colloidal silver in huge doses? We had good luck with putting drops in ears, using dropperfuls in nose (like the old nose drop), and taking by mouth 30 minutes before meals and before bed. Also using the a powerful antibacterial essential oil for cleaning and the oil for gargling and mouthwash. Take vit C throughout day, if you can, and water, water, water! The antibiotics messed my daughter up last winter and she still is fighting the yeast!!"

I've been using colloidal silver (a natural antibiotic) but not as faithfully as I should. Tried hydrogen peroxide in ears twice. Colloidal silver might be better. Been using all kinds of essential oils (for respiratory, etc.) - and most important drinking LOTS of water and taking enough sleep meds to make me get my rest. I also consumed about 9 immune balancing chewables last night. Woke up feeling 30% better with continued progress today. I have to avoid antibiotics if at all possible. Another thing that has helped me ever since my terrible collapse from mold 3 years ago is Tussionex cough syrup (it contains codeine). Costs a bundle ($40 per bottle) but has probably saved my life a few times. I have always been susceptible to respiratory infections since I was born. Excessive coughing can turn into pleurisy, one of the most painful conditions I've experienced. Oh, and I also have been gargling with certain essential oils (looked them up in the EODR) mixed with water and mixing oil. Another big help that I got at the grocery store last night is the new Saline Mist to moisturize burning nasal passages and sinuses. Sucking ice chips for a few hours last night put out the "SINUSES ON FIRE" feeling. I am pulling out all the weapons on this virus. I think I may be able to avoid going to the doctor ($$$$$, since I don't have insurance for doctor visits or meds, except a price-lowering prescription card - but when a med is $90 and they will sell it to you for $65, it is still TOO MUCH!)

Reader 2--

"I have read in a book on essential oils that if you have a pot of water and add essential oil of lemon it helps to kill germs and stuff in the air (or humidifier if it says you can add something to the water in it..) it may be of help unless you are sensitive to citrus....sinusitis 8-10 drops of tea tree oil in bath water....( may want to test a small area for sensitivity first) 2-3 drops of lime in steam inhalation..The book I have is titled Aromatherapy for Everyone by P J Pierson and Mary Shipley."

Wow. Thanks for this cool idea. I have been running a diffuser with oil of lemon in it since getting this cold. If you want info on essential oils and how they work, write me dombush@bellsouth.net. They are effective in so many cases and also safe to use. I'm always looking for non-phamaceutical alternatives to avoid side effects and also liver toxicity.

9. BUSTING A YEAST INFECTION

My last yeast infection (caused by antibiotics) was 3 months of torture and several hundred dollars spent on doctors, tests and meds, which didn't help AT ALL! Oh the misery! What I finally did was use a specific essential oil topically. I also made a mild douche solution with an alkalizing powder. Those 2 gave me instant relief!!!! The itching had been so bad I was about to go crazy! I had also tried douches with acidophilus (a probiotic) and another with Colloidal Silver (natural antibiotic) - which usually help me, but not this time. Needless to say, I am keeping these ingredients on hand. None of the prescription meds (anti-fungals, anti-itch, etc.) worked for me. For info on the oil and alkalizing powder, write dombush@bellsouth.net. Also, please write if you've found other things that help kill a yeast infection.

10. PATIENT RECOMMENDED FIBRO DOCTORS

From Betsy at kindness@fibrobetsy.com--

"Several years ago, I changed my email address and my server, and I've used a domain name on my email address for about 5 years. As you may be mentioning on your website, I only recommend patient recommended doctors. Also, as of 3 weeks ago I charge a very small fee as well."

Betsy maintains a list of patient-recommended fibro doctors. In many places on the net, her service are described as "free," but she now must charge a small fee. I hope everyone understands that those who donate huge amounts of their time to help others still have expenses of their own to meet. If you use her services, I hope none of my readers will begrudge Betsy her small fee.

11. INCREASED SENSORY GREY MATTER IN BRAIN

From a reader--

http://www.immunesupport.com/library/showarticle.cfm/id/8548/searchtext/STRIATAL%20GREY%20MATTER/

Article date Dec. 2, 2007 - "Our data suggest that Fibromyalgia is associated with structural changes in the Central Nervous System of patients suffering from this chronic pain disorder."

Also see the article on my page called "Drained by the Brain" at www.fms-help.com/yuppie.htm.

12. EBV & INCREASED TITERS

Please respond directly to Diane at DCummings@npictdc.com--

"My doctor recently tested me for Epstein-Barr Virus. He sent me a note that I needed to come in and see him because my “titiers” were very high. He says this “usually” means having had a recent infection. I wonder if this is some of the fatigue explanation.” I am “wondering” if any other fibromites out there have had an EB virus test with very high titers? I will see him next Monday to discuss, but from looking on the internet this result could mean anything from “once having Mono, Rheumatoid arthritis, possible chronic fatigue syndrome and even cancer!” So, I suppose that means MORE blood work to rule out the any of those possibilities. I would appreciate it, if you recall anyone else talking about this test and the results being “high titers? - Diane”

13. HYPOTHALAMUS & BODY TEMPERATURE

From a reader--

"My physio told me that some time ago, one of her clients - who is also a fibromite - said that when she has a bad attack, she runs a bath at body temp 38 degrees celsius and lies in it for an hour. It never made any sense to me, but now that I have heard it is our hypothalamus which is to blame, I can understand why this would work."

See my page at www.fms-help.com/hypothalamus.htm.

14. WHAT YOU NEED TO KNOW WHEN TAKING ANTIBIOTICS

http://articles.mercola.com/sites/articles/archive/2007/12/6/u-s-std-rates-on-the-rise.aspx#commentfocus

"Simply put, antibiotics are poisons that are used to kill, and they do so quite indiscriminately, killing both good and bad bacteria at the same time. As an adult human, you have three to four pounds of beneficial bacteria and yeast living within your intestines. These microbes compete for nutrients from the food you eat. Usually, the strength in numbers that beneficial bacteria enjoy keeps the ever-present yeasts in check, and causes them to produce nutrients such as the B vitamins. However, every time you swallow antibiotics, you kill the beneficial bacteria within your intestines. As your intestinal bacteria die, you upset the delicate balance of your intestinal terrain so that yeasts can grow unchecked into large colonies and take over. Any time you take antibiotics, your friendly bacteria, which include Lactobacillus acidophilus, Bifidus and Bulgaricus, must be replaced. Fortunately, you can easily buy these probiotics supplements at your local health food store."

15. DO NOT PARTICIPATE IN DRUG STUDIES

Volunteering to become a "guinea pig" for a drug study could be harmful or even fatal.

16. TYPE A'S ON THE JOB

"Must be my job that I hate! It is so pressurized, and I am so darn conscientious and hardworking it is like an obsession - and of course, they all just take it for granted and pile it on top of one... so it just backfires to work hard. Why does fibro hit the A-type people? who then stress out when they can't deliver like they always have?"

I hear you loud and clear! We fibromites who gave so much to our world now cannot take any stress. Have we "burned out," "blown a fuse," or what? Comments? Write dombush@bellsouth.net.

17. HOLIDAY DEPRESSION

My response to a reader suffering from holiday depression with an unknown cause--

"Have you tried Lexapro? That's the only anti-depressant (one of a long list) that worked for me, but we are all different. It could be the change of weather or less sunshine this time of year or even subsconscious emotional stress with upcoming family gatherings (we all have loss issues, etc.) that bring on depression. Who knows....we are a complex bunch! Sometimes taking a high-quality Omega 3 (fish oil) helps depression. (Don't take a cheap one - it could be rancid! If you need brrand recommendations, write dombush@bellsouth.net.) Others say St. Johns Wort (herb) helps depression. For myself, whenever I get "teary" it's usually because I've stopped taking Omega 3's. I was able to finally go off Lexapro after 8 months. That particular episode of depression was triggered by my dad's death in 2005 www.fms-help.com/eulogy.htm. I went into a downward spiral and couldn't get out. BTW, several years ago, I wrote an article called Christmas Blues at www.fms-help.com/Christmas.htm."

18. FIBRO & PSORIASIS

"When I first started researching fibro back in 1994, I found some interesting research results from people like Dr. Starlanyl and others. They did some family histories and found almost every fibro patient came from a family with fibro history and/or psoriasis. It seems both are neurological/immunological problems affecting different areas of the nervous system. I've had fibro all my life without realizing it until the symptoms were triggered. I have a sister with psoriasis, and my father had it, and his father.... I have a very strong feeling that it's an inherited factor, it's just a matter of time until it triggers if you carry the gene. Maybe somebody doing genetic research will take a look and see if they can tie it to one of the genes properly. So I also believe it's something that's going to be with me all the rest of my life, it's just how bad the symptoms get that matters to me. I control it and I try not to let it get the upper hand."

19. STRESS ALONE DOES NOT CAUSE FIBRO

"You know how anti I am of hearing that Fibro is caused by stress, I think that it must be years of physical and emotional stress. To start off, something physical must be wrong with you. I know the stress my scoliosis caused me, when at the age of 13-16, I had to wear a terrible milwaukee brace to school, which set me different to the other children. But, I cycled with it and did most of the things other kids do, except that the guys said that if they dated me, they have to carry a screwdriver, but I coped extremely well. Anyway, to prove my point. Have my in laws staying with me, as told you. They brought a friend who is amazing. She is as fit as a fiddle, helps me with everything. Has never taken a painkiller. Drinks no tablets whatsoever. Every morning, she drinks the infusion of only one herb - roughtly translated would mean wild goslings. It is supposed to prevent cancer. She is 78. At the age of 23, and when she was 3 months pregnant with her 3rd child, her husband was 26 and he and his brother were drowned, and the other brother fished the 2 bodies out from beneath the boat. I think you would agree, that it does not really get more traumatic than that and yet, she has perfect health."

Good point. And if stress alone caused fibro, everyone living in a war zone would have it. So there's gotta be a genetic link in there somewhere! My husband and I often talk about people who are healthy and people who are unhealthy. Seems you fall into one of two categories in life. One day the genetic link to FMS/CFIDS may be found encoded in our DNA.

20. 10 SIGNS TO DISMISS YOUR DOCTOR

This was posted on our message board--

I think most of us with FMS/CFIDS/ME have encountered doctors like this! I have become really picky about who I choose for a doctor. Having had this illness since 1982, I have met all kinds of doctors - from terrible to wonderful. Since it's my money and my body, I get to choose! Who I feel sorry for is people who are hospitalized who don't have much control over who is attending to them. I have seen rude doctors so many times in hospital settings. If you are reeling emotionally from a visit to a mean doc, see my good doctors / bad doctors page at www.fms-help.com/doctors.htm.

"JUST A QUICK NOTE TO MENTION IF YOU HAVE NOT TRIED THE ESTER-C FOR COLD - I WOULD LOSE MY VOICE EVERY OCT AND NOT GET IT BACK UNTIL MAY -- A FRIEND MENTIONED TO ME TO GET RID OF THAT TO TAKE 3,000 MG - 3,500 MG PER DAY SPREAD OUT DURING THE DAY -- LIKE 1,000 IN A.M. - 1,000 AT NOON - AND ANOTHER 1,000 OR MORE BEFORE BED AND IT WOULD KICK IT OUT OF ME IN ABOUT 3 DAYS.-- WELL THAT REALLY WORKS. ALSO MY DAUGHTER WORKED FOR A VET YRS. AGO AND SHE TOLD HOW ( WHEN THEY FIRST CAME OUT WITH THE ESTER-C) PEOPLE BROUGHT IN A YOUNGER LAB TYPE DOG THAT HAD - NO HIP JOINTS AND WAS NOT REALLY WELL. THE VET PRESCRIBED A HUGE DOSE FOR THIS - ABOUT 40 LB. DOG AND SAID TO GIVE IT TO THIS DOG EVERY DAY AND RETURN IN A FEW MONTHS. IT WOULD HAVE BEEN ABOUT A DOSE = TO 5-6 THOUSANDS MG PER DAY FOR AN ADULT. SHE SAID "MOM THAT IS MY MIRACLE WITNESS FOR ESTER -C" WHEN THEY BROUGHT THAT DOGG BACK A FEW MONTHS LATER IT HAD COMPLETE HIP JOINTS! AND SEEMED PERFECTLY WELL! PLEASE KEEP ESTER-C IN MIND FOR ALL THINGS. I HOPE IT HELPS YOU LIKE IT DID ME FOR VIRAL STUFF."

22. COLLOIDAL SILVER

"I used Colloidal Silver up my nose, in my eyes, and would take 15cc or a tablespoon 3 times a day if I felt an infection coming on. It helped my friend do research during her studies and the part about colloidal silver causing you to turn blue is one of those things that no one has been able to prove. The drug companies lobbied congress to get the law passed that it can not be ordered for human consumption, so those that manufacture it can not put anything in the literature about orally taking it. I have healed chemical burns in a week with it. Healed my mother's surgical incision that was not healing right in a week with it - with permission from her surgeon to use it."

Yes, Colloidal Silver is great stuff! I was able to beat back this sinus infection by spraying it up my nose many times a day - almost like nose drops. Wish I had thought of this 3 weeks ago - maybe I could have kicked this thing sooner! If you need a good brand of Colloidal Silver, write dombush@bellsouth.net.

23. WHY PAINKILLERS DON'T WORK FOR PEOPLE WITH FIBROMYALGIA

24. NEW - DOMINIE'S YAHOO SUPPORT GROUP

Last week a wonderful newsletter reader, Christina, offered to host a message board for my readers at http://health.groups.yahoo.com/group/dominie. Over 150 fibromites have joined so far. If you have questions about fibromyalgia, chronic fatigue syndrome or insomnia, you are in good company! To be in this support group, you need to be on my FMS/CFIDS/ME newsletter mailing list. I give out tons of good information in the newsletters several times each month, and the message board is for my readers to talk with eachother for much-needed support. If you are not yet a newsletter subscriber, write dombush@bellsouth.net. You can visit the archives at www.fms-help.com/newsletters.htm for past issues. When you sign up on the message board, you have 4 options - every post is sent to you as an email, a daily digest is sent, only special notices are sent, or receive no messages and just check the message board as you have time. One useful way to use the message board is to search by topic.

25. DOM'S UPDATE

Feeling good again! That MISERABLE "cold / virus / sore throat / sinus infection / fever / lung infection / cough / swollen glands" thing is gone....I am SO GLAD, because it was really awful! The only "good" thing was that many people in our community had the exact same "bug," so I got lots of sympathy! People actually understood, which is unlike how people respond when you say you have fibromyalgia or chronic fatigue syndrome! This virus was very long-lasting - most people had it for 3-4 weeks! It seemed that only time could make it go away. I chose not to go to the doctor, because I knew they would prescribe antibiotics, which I can't take, plus "drainers" which I already had at home. This virus just had to wear itself out. My husband was sick with it also, and he is NEVER sick! Nothing we took helped. I would have to say that I finally turned the corner with 2 things: one was spraying Colloidal Silver up my nose many times a day (almost like nose drops), and the other improvement was when I started taking Acyclovir (an anti-viral that I keep on hand from the doc) because I felt another cold sore coming on (UGH!!!). Anyway, that's probably more information than most people want to know, but so many of us with CFIDS battle chronic infections and viruses. Thankfully I am back to my "new normal" now, with no pain, fatigue or fog. I feel good and have plenty of energy again. What a relief! My regimen is posted at www.fms-help.com/what.htm. Now if only I can keep away from these mean viruses - but that's not easy as a piano teacher and church pianist, as I am around people a lot.

I am taking it easy this year with Christmas preparations - doing the minimum. Had to turn down a number of social invitations this year due to the "bug," but it was actually better for my health to do less, instead of more (which is my usual M.O.!) There have been so many tragedies in our community this season! Please everyone be careful out there, and if you are have the "Christmas blues," see my article at www.fms-help.com/Christmas.htm. I really miss my dear father, who went to heaven 3 years ago www.fms-help.com/eulogy.htm. The holidays have not been the same without his sweet presence in our family gatherings. I get teary-eyed just thinking about my dad! I know many of my readers have suffered bereavements this year, and my heart and prayers go out to you in your loss. I try to focus more now on the spiritual meaning of Christmas, which is good news to everyone all the time, not just when life is going well - which sometimes seem like a rare occurence. (BTW, if you still want my Christmas CD that I made on a state-of-the-art Roland digital piano, write dombush@bellsouth.net for info on how to get it. You will love the gorgeous sounds I used in playing these 20 popular Christmas carols.)

May God bless each and every one of my newsletter readers! Thank you for your loyalty and contributions of information. It's hard to believe I've been writing a newsletter on this same subject (FMS/CFIDS) for 11 years now! It's a complicated, never-ending subject! Maybe one day they will find a "cure" for this thing!

Fibromite since 1982