DOM'S NEWSLETTER

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

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."

TOPICS IN PURPLE. READERS COMMENTS IN BLACK. MY COMMENTS IN TEAL.

Don't miss: #2, 7, 10, 15, 22, 24, 28 & 31 (or maybe I should just say--check out ALL the fascinating topics below!)

1. READERS WRITE

"It was so heartwarming to find your information on the website www.fms-help.com."

"WOW...WOW.....WOW. I just took alot of time to read through your website. It sounds as if you are telling my current life story!!!"

"Your site was a beacon of light just as I was giving up hope of ever living a normal life again."

"Thank you so much for your site and trying so hard to help all of us out here."

"I love your website and all the information is very helpful!"

"As always your newsletter www.fms-help.com/060908.htm was informative, thoughtful, and much appreciated."

"I really enjoy your site and find the information in it to be extremely valuable."

"Everything you talk about makes sense to me and I am so grateful that you have put your information on the website."

"I am an avid reader of your newsletters and website."

"Thanks for being a gateway to keep us all apprised of what is going on in fibro-world. It has been a constant source of encouragement and help to me over the last 10 years."

"You're an intelligent Type A. It's what forced you to persevere when you could have given up."

"Re: An Emergency Marriage Manual www.fms-help.com/marriage.htm - I've never browsed (for pleasure) a website that actually was able to feed me advice about exactly what I was looking for. Learning how to deal specifically with the ups and downs of relationships is hard, and just wanted to say thank you for expressing yourself and your wisdom on the net."

"I have been reading your website and loving it. Thanks for the helpful information! You make me feel normal!"

"I believe your site www.fms-help.com has more worth than most physicians could even hope to offer."

"Thank you so much for your website. It has helped out greatly."

"I found your website very interesting. I hope to try some of these tips www.fms-help.com/tips.htm as I suffer from FMS."

2. AN OVERWORKED AMYGDALA?

"Ashok Gupta and Dr. Michael Johnson [reported on in previous newsletters at www.fms-help.com/newsletters.htm ] are saying the same thing - an overworked amygdala. This may be the root of my problem. I think I have been scared or nervous most of my life since the age of six. Won't go into the details of why, but a super sensitive nature would be part of it. Johnson says that it is the upper brain stem. That is the mid brain where the amygdala is. I don't know if Gupta's program works or is just a hoax; I'm going to investigate it more. But this explains why we have similar and different symptoms. Each one of us is made up differently with our individual strengths and weaknesses in body systems. So what remedies may work for one may not work for another. And maybe it hits most of us in our forties and fifties because the body can't take any more overstimulation. My problems have been slowly but steadily getting worse for 7 years. I'm gradually getting sorer and weaker as I lose muscle because I can't move. Maybe this is what happens when your amygdala is permanently overstimulated. And there are thousands of us. I just wonder why people in third world countries don't seem to have much of this."

Excellent thoughts! Anyone else with comments? Write dombush@bellsouth.net.

3. MENOPAUSE, GERD and FMS

From a reader--

"I read in your newsletter www.fms-help.com/060908.htm about the lady suffering from FMS and menopause and she sounds a lot like me.

I took hormones when I started menopause and I don't think they did too much for hot flashes. My blood pressure went up too. At that point I stopped the doctor's prescription and started an herb called dong quai. I felt human again! Got rid of the extreme anger and brought my blood pressure back to normal. My doctor was amazed. I put on weight as well. And have not been able to lose any until the last six or eight months. Now I am on a gluten free diet and I seem to lose, slowly. The doctor thinks it's because my insulin is not being stimulated with the carbs from bread, etc. I still eat potatoes and sugar, but do not get hypoglycemia much any more. I also have GERD and take Prevacid on days that it is bad. I have more energy because I take 2000 mg B12 in the morning and another 1000 in the afternoon. If I take any more I can't sleep. But I'm careful not to take an antacid when I take the B12 or it won't be digested. For some reason olive leaf extract gives me energy, so I take two in the morning and two in the afternoon. As for lack of motivation, boy, can I relate to that. Absolutely nothing thrills me anymore. I have to push myself to do anything. It reminds me more of burnout. I have to push myself all the time. What used to give me enjoyment no longer does. This is characteristic of burnout. I need to work on meditation and doing nothing until I am rested.

My FMS did not really kick in until menopause (eight years ago). I don't think pushing yourself to do stuff will help. I am going to check out that program with Ashok Gupta as it really makes sense to me."

4. CLAW HAND

From a reader--

"I have CFIDS and Fibro. A few years ago my left hand, after a stressful week, literally turned into a "claw" shape, and I couldn't fully open it! It was very scary. I went to my rheumatologist (who is very CFIDS and Fibro- aware), who told me I had what was probably a permanent edema (swelling) on the palm of my left hand, and that I also had Reflex Sympathetic Dystrophy (RSD). He sent me to a physical therapist who works specifically with hands. She worked gently with my hand in various ways for several months, and also taught me exercises to do at home with my hand. Thankfully, the "claw" disappeared, and I can open my hand fully, and use it normally. (The edema is still there, but the doc said it would be permanent). Although I no longer go to the physical therapy, I do the exercises regularly, especially when I'm going through a stressful time, and my hand feels a little stiff."

In 1982 when I developed fibro at age 30 www.fms-help.com/fibro.htm, I too had something the doctor called "claw hand deformity." It was from excessive typing as a legal secretary on an "old, work your fingers to death" IBM typewriter.

5. VITAMIN D DEFICIENCY - NOT?

From a reader--

"I had a comment about #6 in your last newsletter www.fms-help.com/060908.htm about fibromyalgia being a vitamin D deficiency. I was hopeful when I first heard about this too. In fact, my rheumatologist knew about it, and had started putting all his patients on high-dose vitamin D, 50,000IU per week by prescription. I took this weekly for 2 years. In addition, I continued to get outdoors a lot in the sunshine, as I have always done. My doctor monitored my blood levels regularly. Well, they never were really low to begin with, and they went even higher after 2 years on the supplements. I noticed absolutely no improvement in my FM/CFS. In fact, I think I started to have a toxicity reaction to the supplements, and had to stop them. Too bad it can’t be as simple as supplementing with one isolated vitamin or mineral. I no longer take the supplements, but I do get natural sunshine, as it lifts my mood, although still does nothing for my other symptoms."

And from another reader--

"I read #6 in this last newsletter about Vitamin D and Fibromyalgia --Dr.James E. Dowd (Rhuematology) who I use to go to, has co-authored a book "The Vitamin D Cure." He moved here(Mich) from Texas and within a yr started having "Fibro-like" symptoms. Finding his Vit D level down he started doing research and testing all his patients with pain symptoms finding most all of them low. ( Normal is in the mid 40's, mine was 13 ) He has been on TV several times discussing his book and Vitamin D levels."

6. DOM'S INTERVIEW

From a reader--

"I read your interview at Bellaonline and was
disapointed......that it was so short!!!
In that interview you explain things very clearly, I
would say not only clearly but intelligently, and I
must admit reading that interview reminded me of my
own situation and how I feel about it,
that may seem weird but... reading the interview made
me emotional and my eyes swelled up with tears..."

Part 2 of Dom's interview is at http://www.bellaonline.com/articles/art23065.asp. (The link was on the right of Part I http://www.bellaonline.com/articles/art23063.asp and easy to miss.)

"A very interesting article. I was 19 when I first got sick and in the last 42 years I have not seen enough change in the medical community nor in my family's idea of FM. It is so frustrating but thank goodness there are people like you who understand and believe."

7. BREAST CANCER and FMS/CFIDS

Please respond directly to Sandy swaller2@roadrunner.com--

"I was diagnosed with invasive breast cancer and wondered if you others who have CFIDS/FM and breast cancer. The CFIDS Association had zero information and I need to talk with someone who has all three. - Sandy"

If you have had experience with cancer treatments and FMS/CFIDS, please contact Sandy directly. This is very important. Thank you!

8. IMMUNE BALANCING POWDER

"I am sleeping like crazy which for an A-type person like me is such a gift even if it seems new. Thank goodness I discovered the immune powder. I didn't take it right away this morning and felt really awful, headachy and depressed. I just took some about an hour ago and now I feel much better -- still achy but not depressed, not awful."

I've had good results with this powder since 2001 for swollen glands, racing thoughts, gas and bloating, and complexion. Prior to using it, my sleep was so bad that even sleep meds did not help. This powder works in the "gut" to re-educate and direct the immune system. Write dombush@bellsouth.net for details.

9. CELL PHONE RADIATION LEVELS

I found out that my cell phone is on the list of the 10 cell phones with highest radiation levels.

10. WHO GETS FIBRO?

"Your list www.fms-help.com/occupations.htm just goes to show that the disease bestows its miserable effects on people from all different occupations!"

"Yes, Fibromyalgia does strike anyone and everyone. Such a shameful waste of human energy! Never planned on my years of retirement being spent in such an inactive manner...never."

"Wow. We are an amazing bunch of people."

Thanks to all who participated in my occupational survey!

11. LYRICA SIDE EFFECTS and WARNINGS

http://patientsville.com/medication/lyrica_side_effects.htm
(you need to scroll down quite a bit on this page, but there are
hundreds of reports on this page. Legitimate!)

Please also see: http://www.adverse-drug-reaction.net/5383.aspx and
read the Warnings and Precautions.

http://www.cfssquared.com/2007/07/10/are-you-interested-in-taking-lyrica.

12. LOWERING PAIN LEVELS

"I volunteered for a hospice organization here in Phoenix, AZ for 12 years until FMS entered my life a year ago. This hospice was awarded a grant to study the effects of several comforting modalities applied to the patient. Three of the modalities I have personally used and have witnessed remarkable improvement in the pain levels. At times the pain level in a terminal patient is a ten. On a scale of 1-10, 10 being intolerable. All of these would hopefully lower the pain level in fibromites--

13. ALLERGIC TO WIRELESS INTERNET?

14. ARE MERCURY AMALGAM DENTAL FILLINGS HARMFUL?

15. MERCURY DANGERS OF THE NEW CFL LIGHT BULBS!

16. ACID OR ALKALINE FOOD CHART

17. BREATHE OXYGEN IN A CAN

Has anyone tried this for fibro fog or CFS fatigue? Write dombush@bellsouth.net. My doc says my blood oxygen level is 99% and that you have to be 93% or below for him to prescribe oxygen. Still, I am thinking of getting oxygen somewhere for help with fatigue and brain fog at times. Makes sense to me.

18. VEGETARIAN DIETS

I occasionally hear from vegetarians who have fibro. One is led to believe that being a vegetarian cures all illnesses, but not so. I just got this tip from a person I greatly respect in the medical/supplement field:

"No vegetarian diets if you’re over 35! Hormones suffer on vegetarian diets."

19. DR. TEITELBAUM'S PROTOCOLS FOR FMS/CFIDS

In the past 26 years, I've tried many of these meds and supplements, which I discovered by trial and error. For a list of meds and supplements I use now, see www.fms-help.com/what.htm. Without them, I have no functionality. (Gotta keep working....)

20. HHV-6 and CFS/ME

From a reader about herpes virus HHV-6--

21. SAMENTO FOR CFIDS/ME

"I personally have tried a couple of hundred herbal, nutritional
and mineral supplements over the course of the last seven
years of my own battle with CFIDS/ME and Samento has
been the most helpful to me. It is my hope that you will find
it helpful as well. I have found about a dozen or so other
helpful herbs and nutrients, but this one is number one."

Here are some links about Samento:

http://www.newswithviews.com/Howenstine/james26.htm - Curing Lyme Disease with Samento

http://www.bionatus.com/nutramedix/pages/samento_what.htm - the difference between Cat's Claw (Una de Gato) and Samento

22. SIMPLE EXPLANATION OF FIBROMYALGIA

Check out this fantastic article posted on Dom's message board:

Excerpt: "Fibromyalgia is a complex condition that's difficult to understand, especially if you don't have a medical degree. Because it involves the brain and nervous system, fibromyalgia can have an impact on virtually every part of the body...A lot of illnesses involve one part of the body, or one system. Fibromyalgia, however, involves the entire body and throws all kinds of things out of whack. As bizarre and confusing as the varied symptoms may be, they're tied to very real physical causes. Fibromyalgia can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy."

Read the complete article - it's good for sharing with people who don't know what fibromyalgia is! Here's a comment that I got from a reader about this article:

"Thank you so much for the link - simple, literate, understandable article. I sent it to my non-understanding SIL - maybe she'll see the 'it's not laziness' part. Now to work on my totally resistant husband."

23. ENTEROVIRUSES and CFS

http://www.cnn.com/HEALTH/blogs/paging.dr.gupta/2007/09/living-with-chronic-fatigue.html - Paging Dr. Gupta - Living with Chronic Fatigue Syndrome. Awesome article about viruses in the gut causing CFS. Read posts from CFS sufferers at the end! We can sure relate!

24. BRAIN MOLD and DEPRESSION

http://www.cnn.com/HEALTH/blogs/paging.dr.gupta/2007/08/are-you-suffering-from-brain-mold.html - Another Paging Dr. Gupta article. Mold goes to the brain and causes depression. Interesting posts at the end of this article from people who are sick from mold. I wonder about the mold problem not only in our homes, but also in schools and public buildings, and how so many people, even children, have to take anti-depressants now! (The Bible talks about the dangers of mold too!)

Reflex Sympathetic Dystrophy Syndrome (RSDS) is sometimes concurrent with FMS/CFIDS.

26. RATE YOUR MEDS

See what others patients say, and also offer input--

27. LYME DISEASE ON ABC NEWS

http://abcnews.go.com/GMA/story?id=5300584&page=1 - Lyme disease is arried by ticks. Sufferers are often diagnosed as CFS or FMS. The article states: "Just because medical science doesn't have the answer that doesn't mean you don't have a problem or it's all in your head."

28. THE GUT IMMUNE SYSTEM

"80% of your immune system is located in your digestive system."

This is about the importance of probiotics! I use an immune balancing powder that works in the gut. I also take an all-in-one powder (vitamins, minerals, probiotics and fiber) daily, and additional probiotics when needed. Read more about the fascinating "gut brain" in previous newsletters www.fms-help.com/newsletters.htm. If you want info on either of the powders, write dombush@bellsouth.net.

Some people with FMS/CFIDS have been helped by coconut oil. See http://www.coconutdiet.com/cfsfibro.htm.

Then I found another article at http://www.westonaprice.org/moderndiseases/fibromyalgia.html that says:

"Coconut oil, despite being 95 percent saturated, is an excellent oil to use with fibromyalgia and other immune deficiency conditions because it contains high levels of a medium-chain fatty acid called laurate, or lauric acid. This fatty acid is readily absorbed by the body and used for energy. Lauric acid is also known to be antiviral, antibacterial and antifungal, making it an excellent supplement for intestinal disorders, which are common in fibromyalgia. Lauric acid is also found in much smaller amounts in butter."

A reader commented:

"Re coconut oil - I tried and didn't notice much. It's good for you though so couldn't hurt - supposed to support thyroid health too.""

If you have tried coconut oil, please write dombush@bellsouth.net. Did you notice any benefit?

30. FOOT MASSAGE

"Ask someone to give you a foot massage (aka foot reflexology) - when cortisol levels are up, you can be certain that too much energy has gone up into your head. A foot massage is a great way to calm down that excessive nervous energy in your head."

Ahhhhhhh!!!!!!!!

31. CHLAMYDIA PNEUMONIAE & HHV6 VIRUS

"I learned some great info this week from a new virology specialist I've been seeing. All about mycoplasmas - amazing stuff. Specificially a mycoplasma called "chlamydia pneumoniae" - here is a great link: http://www.cpnhelp.org. Most with CFS have this. I was FINALLY checked for a long list of viruses, bacterial infections, funguses (they recommend on Dr. Tietelbaum's website) and found I have 4 mycoplasma infections. I want to send you links about this - treatment, how to find docs, etc. It's the latest info from Stanford's virology researchers. For example, did you know this chlamydia pneumoniae mycplasma is called the "heart attack germ" - and many with CFS die of heart attacks, which is what is written on the death reports rather than CFS? I have a HHv6 virus, in the non-STD herpes category, that is similar to AIDS - and will send links for that. All these years you have been so right on about the mycplasma/viral things being the cause. Honestly I never thought I had viruses, considered that CFS, and that I JUST had Fibro, so didn't have any infections. Boy, was I wrong. The good news is there are ways to treat this stuff and many are getting great results. I am taking nitroglycerin and amazingly it also nearly wipes out my pain! Also want to talk to you about liver damage common w/ CFS/FMS and how to treat that."

Found some FMS/CFIDS patient stories here: http://www.cpnhelp.org/?q=patient_stories - cured by discovery and treatment of mycoplasmal infections and viruses.

32. DOM'S UPDATE

I'm still on a sabbatical - mainly trying not to answer email in an effort to spare my hand from typing. I have some osteoarthritis ("wear and tear") from a lifetime of piano playing and typing.

In recent fibro news, my doc wanted to me to try Lyrica, but my experiment lasted only 3 days. My reasons for stopping: I don't have fibro pain anymore (only during the first 14 years, 1982-1996), the side effects reported are scary to me, and thirdly, I found out it's expensive, so even though my doc gave me free samples for 6 weeks, I couldn't afford to take this med on top of everything else I need to function. My current regimen is at http://www.fms-help.com/what.htm. I think I will stick with what works for now. Having been on so many prescription meds, I have great appreciation for natural supplements that have given me so much of my life back - and without side effects!

There seem to be "ups and downs" to this illness that are inexplicable at times. Most of the "crashes" I've had have been from too much "stress." I continue to have to learn to live with (and try to accept) my limitations, much as I wish things were different. Despite having to "work around" this illness on a daily basis, there are happy times in my life too! My main joys are: the Word of God (reading the Bible, hearing Bible-based messages, going to sleep listening to scripture tapes...the truths of God's Word give me security and stability!) I love our church, Madeira Baptist www.fms-help.com/MBC.jpg. I enjoy practicing piano and learning new songs for choir and church services. I enjoy teaching my piano students (age 5 to retired www.fms-help.com/students.htm). And I love our two little dogs: Buster, a chihuahua / rat terrier (black, white and tan) and Cheeto, a sweet-natured long-haired chihuahua (white and tan) - who make our house a home. They bring affection and laughs to our otherwise "empty nest" household. Thank God for pets who love us unconditionally on good days and bad!

If you have questions or comments about FMS, CFIDS or M.E., my MESSAGE BOARD is open to all newsletter subscribers. The support group is located at http://health.groups.yahoo.com/group/dominie. Presently 335+ readers are discussing topics of interest to fibromites. (If you found this newsletter online and are not yet on my mailing list, please subscribe at my site www.fms-help.com.)

www.fms-help.com - Dom's FMS/CFIDS 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.