Dominie's October 2005 Newsletter

DOMINIE'S FMS/CFIDS NEWSLETTER

DISCLAIMER: I am not a medical doctor. I am a fibromyalgia/chronic fatigue syndrome survivor. The purpose of this newsletter 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 newsletter.

This is my last monthly newsletter. See #43.

1. LETTERS FROM READERS

2. COMPUTERS & INSOMNIA

3. SLEEP MED COMMENTS

4. ANA TEST (revisited)

6. VALTREX (revisited)

7. SYNTHROID & IODINE

8. ACCURATE TESTS FOR CFIDS

9. ACUPUNCTURE & FIBROMYALGIA

10. DR. TEITELBAUM (revisited)

11. MAMMOGRAMS - YES OR NO?

12. NO BRAIN CANCER LINK TO CELL PHONES

13. QUESTION FROM A READER ON PLATELETS

14. ULTRACET FOR FMS PAIN

15. CREST SYNDROME

16. INSOMNIA & ELECTROMAGNETIC FIELDS

17. RITALIN FOR CFIDS

19. LOOK GOOD, FEEL TERRIBLE

20. MYCOPLASMAS, BIOWARFARE & FMS/CFIDS

21. LYME DISEASE & CFIDS (revisited)

22. CONFERENCE OCTOBER 29 - POMPANO BEACH, FL

23. PROTEIN & CFIDS

24. REMEDYFIND.COM

25. CHEMICAL CONTAMINATION & FIBROMYALGIA

26. TREATING DOCTORS AS DRUG DEALERS

27. INFECTION & IMMUNE FUNCTION

28. BEWARE OF BOWEN LABS (FOR LYME TEST)

29. SLEEPYDUST.NET (WORK FROM HOME)

30. ACUPUNCTURE & FIBROMYALGIA

31. GUAIFENESIN & DR. ST. AMAND

32. "IS IT ALL IN MY HEAD?"

33. FOR BOSTON AREA READERS

34. FMS DOCTOR NEEDED IN SAN DIEGO AREA

35. ALABAMA STATE UNIVERSITY FIBROMYALGIA STUDY

36. NEW YORK CITY READERS

37. DOCTORS INFECTED WITH STEALTH VIRUSES

38. MERCURY CHELATION & FIBROMYALGIA

39. NEW FINDING ABOUT IMMUNE SYSTEM FUNCTION

40. MILLION LETTER CAMPAIGN UPDATE

41. HUNDREDS OF TIPS FOR FIBROMYALGIA SUFFERERS!

42. SPIRITUAL UPLIFT CORNER

43. DOMINIE'S PERSONAL UPDATE

1. LETTERS FROM READERS

"I always try to read the whole newsletters www.fms-help.com/newsletters.htm as I find them so informative I wouldn't want to miss anything....everything is so helpful....thank you for helping all of us out here with an illness that can't be diagnosed."

"I find your newsletters a real life-line and an inspiration. They give me hope. Your newsletters are far better than any other and I am so grateful for them."

"It's the same feeling as getting a lovely bouquet every month when the newsletter arrives. It's just wonderful to have the new information that you somehow find."

"I have 2 support groups with 60+ members and they absolutely LOVE your newsletter www.fms-help.com/newsletters.htm! I get some from different people & print them all out & copy them to hand out at the meetings & they ALL say, hands down, yours is the best! I copy them front & back, so it's not quite as large & the members don't mind at all! Their VERY favorite of all time?????? The one on marriage harmony www.fms-help.com/marriage.htm ...the biggest one yet! I even gave a copy of that to our Pastor to use in counseling, I thought it was so awsome! I just want to thank you from the bottom of my heart for taking out the time to do all this hard work for us!"

"I wanted to express my gratitude to you for keeping your website www.fms-help.com alive and well in the eyes of the world as well as for the hearts and spirit of fellow sufferers. Many people, when they 'recover,' do not stay long afterwards to offer the helping hand that so many chronic sufferers need as they strive to recover themselves and learn to survive with symptoms that never remit and change their lives forever. Thank you for staying the course. We spoke once on the phone about a year and or so ago. You were so generous with your time and talked so freely, honestly and hopefully. I appreciated that so very much."

"Thank you for the newsletter. It is the only one that I have found to present all options to me. Your comments on each are very helpful as well."

"Your beautiful playing and heartfelt singing www.fms-help.com/servant.wma and www.fms-help.com/welcome.wma left me weeping. I now can listen to you when I am really feeling down. There is a REAL person I can connect with when I am really feeling alone. I don't have a very supportive family."

"You have no idea how much your web page www.fms-help.com has helped me."

"WHAT AN AWESOME WEBSITE. I DON'T FEEL SO ALL ALONE TODAY AFTER FINDING YOUR WEBSITE."

"Thanks for your incredibly informative newsletter (as usual)."

"I enjoyed this so much. Thanks for adding and sharing your church www.fms-help.com/church.htm. I am without one now for 3 years. Miss it terribly."

"I want to thank you for taking your time to send out the monthly newletter. It has more information than any other book, pamphlet, etc. I have read, and I believe it is because it comes from a person who also walks in our shoes. No one knows the things we endure, but someone like you."

"I want to thank you for all the work you put into your monthly letters!! What a blessing and gift from the Lord they are. I have just learned how to begin to use the computer and find web sites for help. I have had CFIDS and now some Fibro for 12 years and have been disabled the whole time. I came down sick after getting Hepatitis B vaccine."

"Thank you so much for this wonderful, informative newsletter!"

"Your website www.fms-help.com is looking great !! Once again, let me say what an angel you are to all of us that rely on your very informative website and monthly newsletters for help with coping with FM/CFIDS. When your e-mail arrives each month, announcing the monthly newsletter, I quickly rearrange my schedule that day to have plenty of time to read and review your newsletter!!"

"I just got thru reading your Tribute page to your father www.fms-help.com/eulogy.htm. Some parts of it made me fight back tears,as it reminded me of my loss of my wonderful mother and father. Your dad sounded like a wonderful, gentle Christian man. I know you miss him,as I do my parents, but they're just waiting for us around the Throne of our Loving God."

"Thank you for your continuing untiring efforts to help sufferers of fibromyalgia and other disorders/diseases. God bless you for all your good works."

"I always look forward to getting your newsletter, and I read every bit of it. I learn something new from it, every time, too."

"Your site www.fms-help.com and your way of writing and looking at our world are truly the most encouraging things for people like us. There isn't anything else out there on the web that is so positive."

2. COMPUTERS & INSOMNIA

From a reader's husband--

"My wife is not using the computer at the moment due to radiation. It seems that when she uses the computer during the day, she does not sleep that night." [NOTE FROM DOMINIE: I used to have the same problem until I started using a magnetic mattress topper and pillow. Also, see my 100 tips for coping - #3 and #64 about computers and electromagnetic fields.]

"I have recovered from my chronic fatigue but I have yet to get rid of my allergies and sinus problems. Exercise, proper nutrition, and a good night's sleep did it for me. Relaxation helps, too BUT I am still unemployed. Housework is a lot of work, I don't know how a full time job will ever fit in. I have my volunteer work at the hospital and the church choir plus some free lance writing. I guess we just have to manage things without neglecting our health."

3. SLEEP MED COMMENTS

"I was on Lunesta the new sleeping pill. I slept two hours. I was on Sonata same thing. I took 30 mg. of Restoril, I was up all night. My Dr. has me on 8 mg of Xanaflex a muscle relaxors and two mg of Klonopin at night and I sometimes add a Benadryl and still toss and turn all night. Ambien makes me feel very weird and nothing else works for me or it makes me sick. I can't take melatonin makes me depressed. I take valerian root but it doesn't help. Some way to live huh?"

Another from a reader--

"Ambien and Xanax here for me. I wouldn't dare switch. It works for me after all the ones I have tried."

[NOTE FROM DOMINIE: See my sleep page at www.fms-help.com/sleep.htm for what's working--or not working--for me. We are all so unique! There's no one medication that seems to help everyone with this FMS sleep disorder.]

4. ANA TEST (revisited)

"In regards to the portion of the newsletter on ANA testing www.fms-help.com/September2005.htm, note that a positive ANA does not necessarily mean one has scleroderma or another autoimmune disease. ANA is one of many tests and criteria that are considered. It is possible to have a positive ANA and not have an auto-immune disease. Again, other criteria must be assessed. An ANA does not hold a great large amount of weight on its own. Here is a good informative link from the Lupus Foundation
about ANA and Lupus, ANA and other automimmune diseases, and ANA in general: http://www.lupus.org/education/articles/ana.html - Key Points: There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease. Certain medications can cause a positive ANA, and many healthy people with no associated illness or condition have a positive ANA...a positive ANA doesn't necessarily equate having a disease. A positive ANA is only an indicator which points in several possible directions, and indicates that further investigation and analysis may be needed."

"BEWARE of Vicodin. I took it for around 10 months, started with a 1/4 tablet and ended up with 1 1/2 tablets for sciatic pain. It inflamed my intestines and the pain was terrible. I burned and itched up inside until I thought I couldn't stand it another minute. I did okay during the night but when I drank just water in the morning, by the time it hit the intestines and they started working it was pain from then on. Eating meat was even worse. I ended up juicing and eating only steamed veggies. I took Natren probiotics, the Healthy Trinity. Started with four, next day 8 and the next day 6. I also juiced green drinks and bought some whole leaf aloe vera from the health food store and drank 1/2 cup twice a day. I used extra virgin olive oil on the vaginal area, as it burned and that did help. On the fourth day I was amazed that almost all symptoms had disappeared. But today was a nightmare again. Extreme pain and a burning, itching colon and vaginal area. All symptoms are back. A doctor did tell me that I had an inflamed intestine caused by Vicodin use."

6. VALTREX (revisited)

"In your latest newletter www.fms-help.com/September2005.htm, you posted a note from a reader telling everyone they wouldn't get better unless they went on the 'Dr. Johnson' protocol and took Valtrex. While Valtrex may help some, I'm sure it's very hard on the liver, and that should be mentioned, but also it should be mentioned that CFIDS/FMS has many, many causes, not just viral."

7. SYNTHROID & IODINE

"I've been coping with FMS for about 10 years now.   Finally 2 years ago
I was diagnosed as hypothyroid. I've always been hypo, but the official
magic numbers for being declared hypo was lowered and I finally am
getting treatment.   Synthroid, by itself was not enough for me. I
tried the timed release T3, but while that raised my body temp. it
didn't really help me feel better. What finally worked was theraputic
doses of iodine in the form of Iodoral from Optimox (It can be ordered
from http://www.willner.com). For more information on why theraputic
doses of iodine is important go to Dr. Flechas site:
http://www.helpmythyroid.com/iodine.htm. I took the iodine urinalysis
and was found to be 90% defficient in iodine! It has taken 6 months for
my energy level to improve. I still need help to sleep through the
night (I take 15 mg of melatonin, 2 dropper fulls of Herb Etc.'s Deep
Sleep { California poppy, valerian, passion flower, chamomile, lemon
balm, green oat seed and orange peel}   and 1/2 25 mg elivil) but I'm
not dragging myself through my days unless I stay up too late for a
couple of nights. Also, I began to add 2 grams of timed release
buffered vitamin C (to feed my adrenals) and that has made a BIG
difference --- more than taking Adrenal gland supplementation. I've
also added extra Tyrosine and Seleninum to my vitamin intake to make
sure my thyroid can convert the synthroid to its usable T3 form.
I'm not 100% yet, but I wanted to pass on the info on the Iodoral,
tyrosine seleninum and the mega C doses for the adrenal glands."

8. ACCURATE TESTS FOR CFIDS

"Below are two separate panels for testing to see if you have CFIDS real name : Myalgic Encephalomyelitis. There are only two labs that really understand how to do these tests accurately one is in CA (I think) the other is in New Jersey."

2100 Chronic Fatigue Syndrome Panel (CFS) by PCR
104 Chlamydia subtype by Qualitative PCR (psittaci, pneumoniae, trachomatis)
112 Herpes Simplex Virus (HSV) by Qualitative PCR
205 Epstein Barr Virus (EBV) by Qualitative PCR
207 Cytomegalovirus (CMV) by Qualitative PCR
219 Human Herpes Virus 6 (variant A and B) by Qualitative PCR
221 Human Herpes Virus 8 (HHV-8) by Qualitative PCR
301 Mycoplasma general by Qualitative PCR

2200 Comprehensive Chronic Fatigue Syndrome ELISA/PCR Panel
104 Chlamydia subtype by Qualitative PCR (psittaci, pneumoniae, trachomatis)
112 Herpes Simplex Virus (HSV) by Qualitative PCR
205 Epstein Barr Virus (EBV) by Qualitative PCR
207 Cytomegalovirus (CMV) by Qualitative PCR
219 Human Herpes Virus 6 (variant A and B) by Qualitative PCR
221 Human Herpes Virus 8 (HHV-8) by Qualitative PCR
229 EBV-VCA IgG/IgM by ELISA
230 EBV-EBNA-1 IgG/IgM by ELISA
231 EBV-EA-D IgG/IgM by ELISA
233 Cytomegalovirus (CMV) IgG/IgM by ELISA
235 HSV 1 & 2 IgG/IgM by ELISA
238 Human Herpes Virus 6 IgG/IgM by ELISA
301 Mycoplasma general by Qualitative PCR
327 Chlamydia pneumoniae IgG/IgM by ELISA
340 Mycoplasma IgG/IgM by ELISA
Serum required

OTHER TESTING SUCH AS LYME IS BELOW

417 Lyme C6 Peptide by ELISA
Serum required

305 Lyme disease (B. burgdorferi) DNA by Qualitative PCR

427 Lyme disease IgG/IgM by ELISA
Serum required

429 Lyme disease Serology Panel
313 Lyme Disease Western blot (IgM/IgG)
417 Lyme C6 Peptide by ELISA
427 Lyme disease IgG/IgM by ELISA
Serum required

428 Lyme disease Serology/PCR Panel
305 Lyme disease (B. burgdorferi) DNA by Qualitative PCR
313 Lyme Disease Western blot (IgM/IgG)
417 Lyme C6 Peptide by ELISA
427 Lyme disease IgG/IgM by ELISA
Serum required

311 Lyme disease Spirochete load by QC-PCR
Only performed after a #305 is positive. Charges will be the total of tests #305 + #311.

313 Lyme Disease Western blot (IgM/IgG)
Serum required

312 Lyme RNA (Active vs. Latent inf.) Qualitative by RT-PCR
Only performed after a #305 is positive. Charges will be the total of #305 + #312.

416 Rickettsia rickettsii (RMSF) by Qualitative PCR

421 Tick-borne disease Serology Panel
313 Lyme Disease Western blot (IgM/IgG)
417 Lyme C6 Peptide by ELISA
419 Babesia microti IgG by ELISA
427 Lyme disease IgG/IgM by ELISA
Serum required

9. ACUPUNCTURE & FIBROMYALGIA

10. DR. TEITELBAUM (revisited)

"My specialist is using Dr. Teitelbaum's protocol, which isn't working well for me. Others have had a good experience, but as we know there is not one protocol that fits all of us." [NOTE FROM DOMINIE: This is the truth. There doesn't seem to be one single approach that helps every person with FMS/CFIDS. There are many good protocols out there, but you have to try a bunch of them to find what works best for you.....no wonder this is called Millionaire's Disease!]

11. MAMMOGRAMS - YES OR NO?

"Should you get an annual mammogram? Most women are told by their doctors that turning 40 means a yearly screening for the rest of their lives -- a notion that reassures some but fills others with dread. If you don’t get a yearly mammogram are you more likely to die from breast cancer? The truth is more ambiguous than you may think." http://www.womentowomen.com/breasthealth/mammograms.asp?id=&campaignno=&AdGroup=&Keywords=&EmailID=35001

12. NO BRAIN CANCER LINK TO CELL PHONES

13. QUESTION FROM A READER ON PLATELETS

"I was wondering if anyone has heard of a low platelet count being at all related to CFS (Not a low red blood count)." [NOTE FROM DOMINIE: PLEASE RESPOND DIRECTLY TO BARBARA.]

14. ULTRACET FOR FMS PAIN

Article I received from a reader--

Pain Relief Improves Fibromyalgia Sufferers' Lives

Friday , August 26, 2005

NEW YORK (Reuters Health) - New research indicates that moderate-to-severe fibromyalgia pain can dramatically impair health-related quality of life for people with the condition. The good news is that effective pain relief can greatly improve the situation.

Fibromyalgia is a chronic condition marked by widespread muscular and joint pain, as well as specific "tender" points that typically occur in the neck, spine, hips and shoulders. Pain is not the only symptom, as sleep disturbances and fatigue, depression and irritable bowel syndrome are often present.

The latest findings, which appear in the medical journal Arthritis & Rheumatism, are based on an analysis of data from a clinical trial comparing the combination painkiller tramadol-plus-acetaminophen (brand name, Ultracet) with inactive "placebo" treatment for relief of fibromyalgia pain.

The health-related quality of life of the 313 men and women who participated in the study was assessed with two standardized questionnaires and compared with the quality of life of a national sample of adults and of people with heart failure.

In all areas of quality of life the fibromyalgia patients scored lower than the national sample of adults, and lower in many aspects than heart failure patients as well, Dr. Robert M. Bennett, from Oregon Health and Science University in Portland, and colleagues report.

As anticipated, the degree of fibromyalgia pain was directly related to the impairment in health-related quality of life seen, but improvement in pain severity with tramadol/acetaminophen treatment led to better quality of life.

"This study provides evidence that reducing pain can reduce the burden of fibromyalgia during a 3-month period," the team says. Further studies are needed to see if addressing non-pain symptoms of fibromyalgia can provide additional improvements in health-related quality of life.

SOURCE: Arthritis & Rheumatism, August 15, 2005

[NOTE FROM DOMINIE: Obviously we need pain relief, but drugs can be hard on your liver. There are many natural things you can use to alleviate FMS pain. I have 95% pain relief without drugs. A list of things I use and do is at www.fms-help.com/what.htm. Since we are all unique, what helps one person may not help another. This is true for both drugs and supplements. However, I offer my list if it will be helpful to someone else--or at least a starting place.]

15. CREST SYNDROME

"I recently was diagnosed with Crest Syndrome. I believe it came from me immune system that isn't working plus i was stressed out of my mind. You can find this syndrome at www.mayoclinic.com It is a horrible sickness, i got so weak then the pain increased from RSDS/FM/chronic fatigue/severe osteoarthritis from my neck to my toes and a host of other things. I am 63 now. This syndrome stopped my stomach from digesting food, so you know what happened in the end. It came out looking like I had just eaten it. My stomach hurt so bad. My blood pressure was going crazy, 170/110 at one point then when that happened I could not catch my breath. All thanks to the crest syndrome. Thank God I was sent to another place for a Doctor. Not a nurse practioner. I was taken off all my drugs which is the fentanyl pain patch. I am now back on the patch but the pain is coming through. It took many vials of blood tests to discover what it was plus my complaints of not digesting food and my heart going crazy. The Dr. came in the room and was all excited about what they had found. I was put on two meds that will help my heart from going crazy, plus my stomach calmed down." [NOTE FROM DOMINIE: I had never heard of CREST syndrome until I looked it up on the Mayo site. It is related to scleroderma.]

16. INSOMNIA & ELECTROMAGNETIC FIELDS

From a reader in New Zealand--

"Wow I am using my little Trifield Monitor. That is a freaky device – I have had to change positions of heaters because the bar heater the cats were sleeping in front of generated masses of radiation! I have re-positioned beds and TVs. No wonder I couldn’t sleep at all in our end bedroom with the bed in its “normal” position, there was an electricity meter on the outside wall at the bed head which made my Trifield Monitor needle go off the gauge! The name of the machine the man tested me for beta radiation printed out onto the top of his report it is a QUANTUM XRROID REPORT. I will see if I can find anything more out (about the machine) at my next consultation with him in a few weeks time. Even though my monitor is reading just about non-existent radiation right now as I pulled out the power pack plug I am too freaked right now to sit here for much longer. Went to a Government agency which is supposed to help disabled etc people find work ha ha. As I sat in the meeting room I felt really ill and mentioned to the man I think there actually is a transformer device here near me … it was under the desk and part of a computer system for remote video meetings happily buzzing near my legs! I never heard back from the agency and didn’t sleep that night!"

[NOTE FROM DOMINIE: See my tips on "Computers" and "Electromagnetic Fields" in my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm.]

17. RITALIN FOR CFIDS

"I am researching Adderall (which I take but that is NOT helping my CFS) and Ritalin, which I took a few years ago with AMAZING results, but stopped taking as I didn’t know enough about ‘stimulants’ and it scared me that they were considered Class II drugs. I found a very interesting chart that shows that Adderall, Provigil, Strattera, and Dexedrine are often prescribed for things such as ADHD, depression, and narcolepsy…HOWEVER…drugs such as Ritalin, Focalin, and Concerta are prescribed for those PLUS CFS (fibro?) The difference must be the properties, as the Ritalin etc. does not have the Dopamine release like the others. My symptoms are mostly CFS but I have some symptoms of FMS as well. I thought that you might want to know my experience."

Most common meds used for pain: http://www.intelihealth.com/IH/ihtIH/WSIHW000/8124/29768/336384.html?d=dmtContent [NOTE FROM DOMINIE: I no longer need pain meds. I have been able to get things under control with natural substances. This is not always possible, so if you must take drugs for pain, this site can help you be aware of their side effects, dependence, withdrawal, etc.]

19. LOOK GOOD, FEEL TERRIBLE

"I was diagnosed in ’94 with CFS with a touch of Fibro, and it is only in the last year that I have been able to hold down a part time job!! I did go back to college and get a 2^nd degree. I still suffer so though! Insomnia, isolation, no energy to cook and do the basics of living, but mostly sadness sometimes that I look/sound/act like such a different person for the 4 hours or so that I am ‘out and about’…I know that you can relate!" [NOTE FROM DOMINIE: Boy, can I ever! Read Terri Been's excellent article on my site: My Name is Fibromyalgia at www.fms-help.com/mnif.htm.]

20. MYCOPLASMAS, BIOWARFARE & FMS/CFIDS

"The night that I read that article on the ‘Biological Warfare and Mycoplasmas' www.fms-help.com/mycoplasma.htm …well, you just don’t know how that affected me! I felt like someone had punched me in the stomach! I even called my sister (nurse) and woke her up! It especially affected me because I got sick 6 months after being transferred to [an area near testing]."

21. LYME DISEASE & CFIDS (revisited)

"My awesome doctor seems obsessed with the notion that CFS is actually Lymes disease lately." [NOTE FROM DOMINIE: Use the Google search box (at the top or bottom of this page) to find previous newsletter articles on Lyme and how if it is misdiagnosed and treated, it can cause terrible effects. Be careful!]

And from another from a reader about Lyme--

Symptomatic Presentations of Lyme Disease include:

Fatigue

Low grade fevers, "hot flashes" or chills
Night sweats
Sore throat
Swollen glands
Stiff neck
Migrating arthralgias, stiffness and frank arthritis
Myalgia
Chest pain and palpitations
Abdominal pain, nausea
Diarrhea
Sleep disturbance
Poor concentration and memory loss
Irritability and mood swings
Depression
Back pain
Blurred vision and eye pain
Jaw pain
Testicular/pelvic pain
Tinnitus
Vertigo
Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)

22. CONFERENCE OCTOBER 29 - POMPANO BEACH, FL

INSPIRING HOPE THROUGH AWARENESS - 5th Annual Neuroendocrineimmune Disorders Conference

^{Emma Lou Olson Civic Center}

1801 N.E. 6th Street

Pompano Beach, Florida 33060

October 29, 2005

From 9:00 am to 3:30 pm

For additional information please call Jenny Torres at 305-441-1591 or e-mail at contact@pandoranet.info or visit later our web site at www.pandoranet.info where updated information will be posted as the event nears.

23. PROTEIN & CFIDS

"Since I have been eating about a pound of meat a day (it is getting expensive) and red meat is best. I've been trying to buy organic grass fed and have been able to do so, but need to do so in bulk as I'm eating so much. The protein is really helping me. Ever heard of that before with CFS?"

24. REMEDYFIND.COM

Rate which health treatments really work and which don't! Your input is very valuable! See http://www.remedyfind.com/sitemap.html. This is a wonderful site! I've been doing some ratings on this site, since I have tried so many things for FMS/CFIDS/Insomnia for the past 23 years. It's nice to let all of us guinea pigs have a voice and express our feelings! Brett Hodges, site owner, has his own story at http://www.remedyfind.com/show_profile.asp?id=2. I'm really glad he started this site for everyone!

25. CHEMICAL CONTAMINATION & FIBROMYALGIA

A reader asks this question - please reply directly to Lorraine at tony@fearn54.fsnet.co.uk--

"Has there ever been a conection of a fms sufferer and their partner bringing contamination home from his workplace? Either carcinogenic materials (glues, solvents etc. or depleted uranium). A work colleague of my partner has an illness from depleted uranium."

26. TREATING DOCTORS AS DRUG DEALERS

The DEA’s War on Prescription Painkillers

27. INFECTION & IMMUNE FUNCTION

Article by Hellen Greenblatt, Ph.D.

Immune Protection from Infection

The body’s immune defense system is designed to respond to “danger signals”. Such signals can be triggered by invading pathogens (e.g., viruses and bacteria) with their foreign markers, or by damage to the body. Inflammation, mediated by the various white blood cells of the immune system, is the weapon system that goes into action when the body tries to stop infection, or in wounds to start the healing process.

The symptoms of inflammation are redness and a warm feeling at the site. These symptoms are caused by increased blood supply to the affected area. This sort of response is often accompanied by swelling from a buildup of fluids and internal pressure compressing nerve ends, and can result in a feeling of pain and tenderness.

There are many different types of white blood cells involved in protecting us. For example, some immune cells engulf and surround pathogens and kill them. Other white cells wall off infections and prevent them from spreading. The process of responding to foreign agents is a highly orchestrated process that is dependent on a balance of the right types of immune cells and immune molecules (e.g., cytokines, immune co-factors). These messages are used by immune cells to interact with, and regulate other immune white blood cells.

Some viruses and bacteria have cunningly evolved ways to prevent “danger signals” from coming immediately to the attention of the immune system. For example, rheumatic fever is a complication of “strep throat” (the bacterial infection is Streptococcus). In this disease, the bacteria targets heart valves. The body tries to stop the infection, gets “carried away” and starts to attack healthy heart tissue and cells, leading to damaged valves and heart disease. Other immune disorders such as lupus, diabetes, Crohn’s disease, arthritis, fibromyalgia, etc. fall into the autoimmune category of disease as well.

Viruses have been implicated in inflammatory diseases of the liver (hepatitis), heart (myocarditis) and brain (encephalitis). In these sorts of diseases it’s not understood how much of the damage is caused by the virus itself, and how much damage is due to the autoimmune responses that have been started. Nonetheless, these sorts of overactive immune responses can be devasting.

In order for the body to appropriately protect us, our exquisitely delicate immune systems must be in homeostasis (i.e. a well-balanced state). Just like with Goldilocks and the Three Bears, it has to be 'just right'.

[NOTE FROM DOMINIE: I have struggled with poor immune function most of my life. I have to be very careful to avoid viruses and infections. Immune deregulation is something that most people with FMS/CFIDS are challenged with. For a list of things I personally use, see www.fms-help.com/what.htm.]

28. BEWARE OF BOWEN LABS (FOR LYME TEST)

"My Dr. insisted that my CFS was from Lyme. My screening test recommended by CDC was the Elsa. This gives out many false positives so you are supposed to go on to Western Blot test if you get a postive result for confirmation. Well, I got a negative on the first test, but my Dr. talked me into taking a second test for 250.00 bucks out of pocket. The Bowen lab is in Florida by the way. Anyway, I think they are a scam because according to their own website www.bowen.org They find an incredible amount of lyme disease in their samples 100 percent of their samples are found to have Lyme disease!!!!!!!!!!!!! Tell readers to beware of this test!"

29. SLEEPYDUST.NET (WORK FROM HOME)

30. ACUPUNCTURE & FIBROMYALGIA

31. GUAIFENESIN & DR. ST. AMAND

From a reader (Brenda)--

"Recently discovered your website www.fms-help.com while searching 'storing guaifenesin.' I must say, I have enjoyed visiting your website and have found it most informative and very comprehensive. I, too, suffer with fms and was officially diagnosed in December 2002 after three years of trying to find out what was wrong with me. I can remember having tingling in arms, hands, legs and feet as far back as 1988 and at the time thought it was MS. It would come and go. I was a long distance runner at the time and associated a lot of the aches and pains with being overactive or overdoing. Long story short: By the fall of 2003 I could hardly function at all and could not walk to the end of my driveway. I was constantly moaning or screaming out loud in pain and I had lost all sense of pride and dignity. Was about ready to quit working and take disability and missed an awful lot of time from work. You know the story.

I was saved by Dr. St. Amand's book and the guaifenesin protocol. My story is published online at www.guailife.com under success stories. In September '03 I was making preparations to end my life and felt pretty damn good about it!! I had tried everything and nothing worked. An angel appeared before me in the form of a friend from work who held out Dr. St. Amand's book for me. It seemed like a lot to do but I was desperate. It has worked great in spite of the pain and symptoms brought on by the cycling but it was cycling to get well and not worse. I have now been on the protocol for two years on Oct. 7, 2005, and am about 50% symptom free. Am able to work full time and function normally. Insomnia was the first symptom to disappear though complete rest would not come until night pain disappeared. I am feeling really good except for the days when the cycling is rough but those days are becoming fewer and fewer. The good days are the best days I have ever known.

Dr. St. Amand's book is 'What Your Doctor May NOT Tell You About Fibromyalgia.' The author is an assistant professor of endocrinology at UCLA. He also runs the Fibromyalgia Treatment Center in Santa Rosa, Ca. and his treated fms for over 30 years now. He also heads up the Fibromyalgia Research Center. In fact, he himself has the disease. I think whether or not one chooses to try the treatment he prescribes and pioneered, the book is well worth reading. It is written in great detail and is easy to comprehend. Once I read his book, I thoroughly understood my disease."

Brenda later wrote this about when guai doesn't seem to help:

"The trouble with the guai failures is that most folks give up thinking they are getting worse since that's what happens when one is "cycling." Or perhaps they are not at the right dose or are blocking with salicylates. It takes the average guaier 3-5 years to become symptom free. Also, most folks feel like it's just too much to do, i.e., avoiding products containing salicylates, controlling the hypoglycemia which usually accompanies fms. However, there are lots of websites and support groups geared to helping others on guai. Because of my fms, I have been horribly swaybacked for many years now and this is due to the lower back muscles becoming petrified. I have had many MRI's and bone scans of my spine but my spine is 'beautiful.' Am now slowly beginning to get some movement there but the cycling that is making this possible is also causing muscle spasms (ouch!!!)"

32. "IS IT ALL IN MY HEAD?"

From a newsletter reader--

http://articles.health.msn.com/id/100108081?GT1=7003

[NOTE FROM DOMINIE: After reading this article, I must say that I agree with Pat Fero, executive director of the Wisconsin chapter of CFIDS, who the article states "remains skeptical of the value of psychologically based therapies. She points out that a good attitude alone isn't going to make symptoms vanish, and she doubts that cognitive therapy would improve her chronic fatigue. 'If you're feeling negative about everything around you, yes, you're going to feel worse,' she says. 'But the opposite is not necessarily true: If you improve the state of your mind, it doesn't mean you'll cure yourself.'"]

33. FOR BOSTON AREA READERS

From Susan SNEW2001@cs.com--

"I have been using an advanced scenar device (bio-modulator) with great results. I purchased it from www.senergymedicalgroup.com. I just got back from DR Jerry Tennants training weekend and loved it.
The device is most valuable overall for resetting the sphenoid bone in the skull which realigns the atlas (c1) neck vertebra in minutes. I love this device. It does much more but if that is all that it did it is still phenomenal.

Although I go to a NUCCA chiro who specializes in this, this keeps me in line and probably will not need to go anymore soon. I live a bit north of Boston and I would be willing to work with someone to see if it makes a difference on them. To determine if your atlas is off, look in the mirror and see if you are not looking straight, check your neck, stick your fingers in your ears at the roof of them and see if one is lower. This is huge! It works! As long as I don't charge, it is legal.

The device is approved by FDA for muscle biofeedback and reeducation (something like that), however it does much more - you know the FDA. I wouldn't be able to spend a great deal of time with anyone, just the basic resetting of the autonomic nervous system which is the same as the resetting the bowling ball (your head). If you know of anyone in this area who is desperate to try something let me know. It is very painless, just involves putting the device on the side of the neck for 1-3 minutes and introduce frequency currents. I would rather work with someone who takes guaifenesin because I still need to take this but a much smaller amount. If I don't take it, I start to develop pain after a week or so. It's part of my plan. I will be away from 9/16-9/23 so will not be checking emails until after that." - Susan SNEW2001@cs.com

Below is a response from a newsletter reader for your consideration--

"The SCENAR device is listed on the Quackwatch site as a "Device which is
promoted with false or misleading claims". More information about
devices similar to this one are listed and I'm sure a note to Dr.
Barrett with questions about this device would offer more information. I
didn't go into it any deeper because it just "sounded" like one of those
phoney deals right off the bat to me, but I'm no professional.

I do know alot of us are trying the so called cranial adjustments and I
read several articles about why that is quackery. The best explanation I found
was that it takes a surgeon using saws, knives and chisels to get inside
our skulls to operate, so HOW could our bones be moved by very light
pressure! Our skull bones "seal" very early on in our lives and
are virtually immovable except by a skull surgeon, or by severe head
injury or striking with a heavy object and then usually only a crack or
a hole develops.

There are so many out there trying to rip us off and we have to be our
own detectives and save our hard earned money for proven products. If it
seems too good to be true...it usually is! For now there is NO CURE for
FM or CFS, though hope for a discovery always exists.

The mind is a wonderful thing and we can have pain relief for brief
periods of time from sugar pills at times, but some things can and do
cause injury, so it's not always true that things that can give a
placebo effect have no harm. We are warned about putting our clock
alarms etc. on bedside tables near our heads, so I wouldn't use any
device that emits any sort of electrical current near my own
head. That's just me though."

34. FMS DOCTOR NEEDED IN SAN DIEGO AREA

From reader, Marsha sweet2th52@sbcglobal.net (please respond directly)--

"I am desperately seeking help from anyone living in the San Diego area (North County Coastal region) who can refer me to a good family doctor or internal medicine doctor who is willing to coordinate my health care for Fibromyalgia. I have a rheumatologist but he will only see me about three times a year and is insisting that I find a family doctor. This may sound like a simple thing to do, but I have tried calling the Arthritis Foundation and physician referrals for two local hospitals and haven't had much success. They will refer you to a doctor, but I haven't found anyone who really knows that much (or cares) about Fibro and with all of my health problems, I really need a good doctor. It can't be a Kaiser doctor since I don't have that insurance but other than that, I can see just about any doctor who accepts new Medicare patients. They can e-mail me at sweet2th52@sbcglobal.net." - Marsha

35. ALABAMA STATE UNIVERSITY FIBROMYALGIA STUDY

From newsletter reader,Kay Walker, RN (icwellness@aol.com)--

"I was very sad to hear you are stopping the newsletter, but I have to tell you that you have held in there for a long time. You ran my info in your newsletter a couple of months ago. My email is icwellness@aol.com and my web-site is www.fibromyalgiahelp.org it is up and running now and things are progressing. I am associated with Alabama State University and we are looking for participants in a double blind study utilizing my program. I would appreciated it if you would put the word to all your readers who may be interested in participating in this endeavor. I am trying to make a difference and help people find true help not just a hope of help. My symptoms are completely reversed. Thank you so much for your dedication."

36. NEW YORK CITY READERS

This was called to my attention by a reader. Contact Dr. Enlander below if you want to participate.--

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

From Jean Harrison:

Attention US based CFS patients Dr Derek Enlander, of NYC, is collaborating in the research led by Dr. Jonathan Kerr, St George's Hospital, London on an exciting RNA genetic study of CFS. Dr Kerr's team believes that it has discovered biological markers for CFS. They have found differences in gene expression in white blood cells, which could explain how viruses trigger ME/CFS. There is a genetic abnormality in the protein production in the mitochondria. To read more about the study see: http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/4702515.stm So far the work has been carried out on 25 patients and 25 healthy controls, and the results will be published in the Journal of Clinical Pathology. Now Dr Kerr 's team is going to be testing 1000 patients. Not only do they hope to find this a diagnostic marker for ME/CFS but also they believe that this will lead to a treatment. Dr Enlander will be taking samples from ME-CFS patients who can get to NYC, the samples will then be sent to Dr Kerr. Funding for the research is by the funding by the British CFS Research Foundation (www.cfsrf.com) & a small grant from the National CFIDS foundation. To reach Dr Enlander about participation in this valuable research please email him at <denlander@...>. [SORRY - THE EMAIL ADDRESS WAS INCOMPLETE IN THIS MESSAGE. HIS OFFICE PHONE NUMBER IS 212-794 2000.] Dr Enlander is a scientific advisor for MAME inc. Jean Harrison MAME inc.

37. DOCTORS INFECTED WITH STEALTH VIRUSES

38. MERCURY CHELATION & FIBROMYALGIA

"I found your website and have enjoyed reading it -- I can relate to your personal story www.fms-help.com/fibro.htm so much. The same happened to me six years ago. I was stricken with Fibromyalgia,etc. and have gone to many doctors, and gone thru the 'it's all in your head' diagnosis. I had to give up my 25 year Real Estate career and some days I feel like I'm 90 years old. I'm now undergoing I.V.Chelation sessions, after my test revealed very high lead, mercury levels. My Internist says that is the root cause of my Fibromyalgia,etc. I've had 4 of 30 (which I must have). I pray he's right." [NOTE FROM DOMINIE: The net is loaded with information about mercury toxicity and fibromyalgia. I have not been tested for mercury, mainly because I'm a dental "chicken" and don't want my fillings removed. I have found other ways to get my health back www.fms-help.com/what.htm. My mouth was paved with mercury during my childhood by an aged small town dentist in a dark old building who used NO ANESTHESIA for fillings and had the world's slowest, hottest drill. (It was like the scene from the movie Marathon Man with Dustin Hoffman...but don't go see it....too gruesome!) Anyway.....I've heard from many people who underwent mercury removal and got better with their fibro and also many that got worse because the mercury was disturbed.]

39. NEW FINDING ABOUT IMMUNE SYSTEM FUNCTION

From immunesupport.com--

'Underground' Tunnels Discovered as Means for Communication Between Immune System Cells ImmuneSupport.com

09-21-2005

Source: University of Pittsburgh Medical Center

40. MILLION LETTER CAMPAIGN UPDATE

Responses to our Million Letter Campaign www.fms-help.com/letter.htm (held on May 1, 2005) are located at www.fms-help.com/update.htm - be sure to read #14 - Marly Silverman's letter. It was most encouraging!

41. HUNDREDS OF TIPS FOR FIBROMYALGIA SUFFERERS!

From a newsletter reader--

http://fibromyalgia.lifetips.com/TipSiteMap.html - look at the end of the link name to see what the tip is about. Some of these are very good!

42. SPIRITUAL UPLIFT CORNER

Below are two articles that got me thinking.....

Charles Shultz's philosphy (so true!)

The following is the philosophy of Charles Schultz, the creator of the
"Peanuts" comic strip. You don't have to actually answer the questions.
Just read straight through, and you'll get the point.

1. Name the five wealthiest people in the world.

2. Name the last five Heisman trophy winners.

3. Name the last five winners of the Miss America.

4. Name ten people who have won the Nobel or Pulitzer Prize.

5. Name the last half dozen Academy Award winner for best actor and
actress.

6. Name the last decade's worth of World Series winners.

How did you do?

The point is, none of us remember the headliners of yesterday. These are
no second-rate achievers. They are the best in their fields. But the
applause dies. Awards tarnish. Acheivements are forgotten. Accolades and
certificates are buried with their owners.

Here's another quiz. See how you do on this one:

1. List a few teachers who aided your journey through school.

2. Name three friends who have helped you through a difficult time.

3. Name five people who have taught you something worthwhile.

4. Think of a few people who have made you feel appreciated and special.

5. Think of five people you enjoy spending time with.

The lesson: The people who make a difference in your life are not the
ones with the most credentials, the most money, or the most awards. They
are the ones that care.

"Greater love hath no man than this, that a man lay down his life for his friends." John 15:13

Another article I received--

Why Go To Church?

A Church goer wrote a letter to the editor of a newspaper and complained that it made no sense to go to church every Sunday.

"I've gone for 30 years now," he wrote, "and in that time I have heard something like 3,000 sermons. But for the life of me, I can't remember a single one of them. So, I think I'm wasting my time and the pastors are wasting theirs by giving sermons at all."

This started a real controversy in the "Letters to the Editor" column, much to the delight of the editor. It went on for weeks until someone wrote this clincher:

"I've been married for 30 years now. In that time my wife has cooked some 32,000 meals. But, for the life of me, I cannot recall the entire menu for a single one of those meals. But I do know this... They all nourished me and gave me the strength I needed to do my work. If my wife had not given me these meals, I would be physically dead today. Likewise, if I had not gone to church for nourishment, I would be spiritually dead today!"

"Not forsaking the assembling of ourselves together, as the manner of some is; but exhorting one another: and so much the more, as ye see the day approaching." Hebrews 10:25

Sadly, for many of us, our health is not good enough to be regular in our church attendance. I recently sent an email with a link to a new page on my site about my home church www.fms-help.com/church.htm -- I tell about how for many years I didn't have the health and strength to go to church regularly and how much I missed it! I got many positive responses from readers, except for this one:

"Your increasingly religious approach to life with fibromyalgia is vexing to me. If you have new facts or research to report, it should be objective. That's just my opinion, but I am seriously considering unsubscribing to your newsletter for this reason. Let there be no doubt that I want and need information on FM, but perhaps yours is not the site for me."

Now here is one of the many positive letters I received--

"I was very blessed by your e-mail. There are MANY Sundays that I just cannot make it to church. Just the thought of trying to get in the shower just exhausts me, and dressing?? I need to be comfortable, so that would mean wearing my pajamas, as I cannot stand anything on my hips, as they feel as if they are broken. I have been feeling so guilty and condemned when I cannot make it to church. It was nice to know that I was not the only one that this has happened to. I am so thankful for the Spiritual side of your support."

43. DOMINIE'S PERSONAL UPDATE

With this October 2005 issue, I am retiring from writing a monthly FMS/CFIDS newsletter. Thank you for your tremendous support and encouragement over the years.

As I approach my 10th year of newsletter writing, I find that I can't keep it up anymore. I spend an average of 4-6 hours per day writing the newsletter and webmastering my FMS/CFIDS site at www.fms-help.com. I am living in a cyberworld more and more, yet am busier than ever with my growing group of piano and guitar students www.fms-help.com/students.htm. There's only so much of me to go around and something has to give. I have to keep my paying job, and I also want to enjoy some sunshine and fresh air and get away from the computer for awhile. (And did I mention the laundry, cooking, etc.?)

I have made many wonderful friends through my website and newsletters. However, I now receive so much email that I can't personally answer anymore. I am NOT happy about this, because your correspondence is very important to me and always will be. (Please know that I read your emails, even if I can't reply due to time constraints.)

When I first began my site in 1996, there were only seven (7) sites online about fibromyalgia. Now there are thousands!!!! There's more information on this subject than a person could read in a lifetime! I find now that I am duplicating the efforts of other sites who are doing a FAR better job than I am. In my opinion, two of the best and most useful are:

ImmuneSupport.com - www.immunesupport.com - The world's largest Fibromyalgia and Chronic Fatigue Syndrome site with 6,000 Fibromyalgia and Chronic Fatigue Syndrome articles and abstracts and over 5 million visitors annually. They also have Fibromyalgia CHAT ROOMS and MESSAGE BOARDS! (What more could we want?!)

RemedyFind.com - www.RemedyFind.com - You can find or RATE REMEDIES for Fibromyalgia, Chronic Fatigue Syndrome, Depression, Insomnia, and other health conditions. A tremendous resource and connecting place for sufferers to voice their own experiences with various meds and supplements. Or just stop by and see what others have reported. (This is basically what my newsletter has been doing recently.) By the way, I will be hosting the bimonthly RemedyFind FMS Newsletter beginning in October 2005 (a volunteer position). You can sign up for this newsletter on the RemedyFind site.

Thank you for sharing your FMS/CFIDS experiences with me over the years. My newsletter was really YOUR newsletter, because most of the material came from you, my wonderful readers! My site www.fms-help.com will remain active and growing, and I hope it continues to encourage FMS/CFIDS sufferers everywhere. I will put all new material that seems worthwhile on the site.

A list of things I use is at www.fms-help.com/what.htm. All of my recent newsletters are on my site at www.fms-help.com/newsletters.htm. If you are looking for specific information, go to my homepage at www.fms-help.com and type your subject in the SEARCH BOX. It will quickly find every reference to that subject on my site and in my newsletters.

If anything earthshaking happens in the fibro world, I will send out special email notices, so you will still hear from me. (I don't go away that easily.....ha!!!)

Your fibro friend,

Dominie Soo Bush

P.S. Thank you for your heartwarming farewell emails! I have posted some of these below...

"I will miss you and your newsletters dearly. I can empathize with you. I really didn't know where you got the energy in the first place but was so grateful you did as I received so much information from your site www.fms-help.com and newsletters. I want to wish you happiness and good health and enjoy everything you have worked so hard for. I also want to thank you for being brave enough to start a site like this."

"I miss you already and you're not even gone! Thanks, Dom, for all your help we love you and keep well!!!"

"Smart Lady! FMS & Cyberland Caused My Divorce!!" [NOTE FROM DOMINIE: See www.fms-help.com/marriage.htm.]

"The way I see it your retiring is another success in the fight of Fibro. The fact that you feel well enough to keep up your music business www.fms-help.com/students.htm and to have quality time outdoors gives hope to the rest of us. I've been receiving your newsletter for only about 4 years. I know that others have been appreciating your knowledge and help for a lot longer than that. However, in those 4 years at least for me it has been a God send."

"You go, Girl! You've done your part, go and enjoy life now! Good luck, I'll miss you!"

"Please know how much I have appreciated your wisdom."

"Your million letter effort www.fms-help.com/letter.htm and all the tireless devotion is a strong force behind the big battle of brave people with fibro who suffer a lot and get no recognition or awards for it. They aren't even believed--well they 'weren't' even believed until people like you helped and have made a big impact so now there is some fibro recognition and its growing by the minute. With appreciation and gratitude as your life journey goes into new territory."

"Your newsletter has been very helpful and as you say there is so much on the internet now but, it doesn't have the personal touch. You will be missed."

"Aside from all the terrific information your site provides for all of us in the CFIDS and Fibro community, there is something about you as a warm, caring, giving person that always gave it an extra something! Enjoy the lovely things of life!"

"Thank you ever so much for all you do. Please know how grateful we all are. You are one of God's angels and you've earned the change of pace."

"I am so so sad to see you leave, but I ALWAYS asked myself the question: HOW DOES SHE DO IT????? JUST with the fms alone and the cfs....not counting all the secondary illnesses and the many things a woman needs to do in order to take care of herself and her family....and then, like you mentioned - getting some fresh air and LIVING a bit....so, I say goodbye.....but my prayers are with you as you leave. Your site www.fms-help.com has been a major blessing (and by the way, even though there are many and hundreds of fms sites, YOURS was my favorite!)"

"I know many of us will miss your letters, even thou there are so many other sites to go to, yours have always felt so personal."

"I always was amazed at how you could possibly keep up with the pace that you have. You are a super woman. Thanks for caring enough for others to have carried this as far as you have. I wish you the best of luck in your endeavors and enjoy all those things in life that bring you happiness. You deserve them. A faithful fan and much wiser person."

"You will always be considered a dear friend to me..... always there for me - even afar. You helped me through some very terrible fibro and extra stressful times, even though you may not be aware of it."

"Thank you for your service. It is good news to hear that someone's functioning level is getting as active as yours."

"Your input will be sorely missed, but I am so glad to hear that you are going to be taking care of yourself. Good luck with your teaching www.fms-help.com/students.htm. Your students are fortunate to have such an inspirational teacher."

"Don’t want to overload your e-mail with this but I just wanted to say an extra 'Thank You' from all of us who have so enjoyed your efforts & help. It is so much more than reasonable that you make this decision and we can all see where you are coming from & going on to. Life happens and we have to roll with the punches and change as God dictates to us. You’ve done so much more than anyone and have left your mark upon all our hearts. We all will forever appreciate your efforts & dedication. Feel no guilt as you go the new way God has for you and know it is with all of our sincerest gratitude & appreciation!"

"Thank you so so much for your gracious, grace-filled work you have done for so many."

"May GOD richly bless keep provide and protect you here on this earth for all the great help you have been to many many others. As a massage therapist I've used a lot of the information with a great numbers of fibros and other therapists for their clients as well. So your work has cascaded immensely. Thank you for sharing so much of your life and best wishes to enjoy it to the fullest."

"I am very sad to hear of your 'retirement' but do certainly understand. I was relieved to hear your materials will still be available on line for a while as I have not yet had a chance to read them all and really want to."

"Much, much thanks for all the newsletters you have provided us with !! Every month, I would say to myself: this is a lot of work; how does she do it?!?? So I completely understand your decision to stop the monthly newsletters...I think it is a smart decision, although I am sure it was difficult to make. Your life sounds so busy right now, the last thing you want to do is over do it and upset your balance of coping with your FM/CFIDS. We will all miss your monthly updates, but again let me say, this sounds like the right decision. Immunesupport.com is the FM/CFIDS site I rely on most for recent news, so I was glad to see you list it as one of the best. And your website www.fms-help.com is fabulous!"

"I WAS SADDENED TO READ YOU ARE RETIRING FROM WRITING YOUR NEWSLETTERS. HOWEVER, I TOTALLY UNDERSTAND. THE HOURS AND RESEARCH YOU PUT INTO YOUR WORK HAS TO BE TAKING IT'S TOLL ON YOUR LIFE. HOW WONDERFUL TO READ THAT YOUR PIANO AND GUITAR STUDENTS ARE INCREASING IN NUMBERS. MANY TIMES I'VE WONDERED HOW YOU COULD KEEP UP. I BARELY CAN TAKE CARE OF HOUSEHOLD CHORES SOME DAYS. ALL YOUR WORK AND CORRESPONDENCE HAS BEEN MUCH APPRECIATED. YOU ARE RIGHT, THERE ARE SEVERAL WEB SITES WE CAN CHECK OUT FOR INFORMATION. PAT YOURSELF ON THE BACK THOUGH, YOU ARE PROBABLY RESPONSIBLE FOR GETTING THE "BALL ROLLING"! IT HAS BEEN SO GOOD TO GET TO KNOW YOU AND ALWAYS LOOK FORWARD TO READING ABOUT YOUR PERSONAL LIFE, AS WELL AS NEW INFORMATION ON FIBRO. MAY GOD CONTINUE TO BLESS YOU AND YOUR FAMILY, YOUR WORK WITH STUDENTS AND YOUR MINISTRY."

"Thank you for all your unselfish giving. I'm glad you are cutting back so you can have a life!!!!!!! Happy for you!!!"

"Thanks you for all your help. I was there when you started in 1996 and when they tried to shut down your site."

"I am so thankful for you! I understand where you are coming from...for, I too, am at the same place. But, never let us withdraw totally....let us continue to do what we are able to do, without endangering our health and financial status." [NOTE FROM DOMINIE: Unfortunately, I've been doing that for too many years now, which is why I need to bow out at this time. However, I will be hosting the RemedyFind bimonthly FMS newsletter and also adding to my site www.fms-help.com when I can.]

"Thank you for your site it has been a god sent for me. I've been receiving good advice from you for the lasted three years. It has been a comfort just to know I could email you with a question and you or your readers would help me no matter how dumb the question might be. I understand the need to rest, so be blessed and seek His face. Best to you and your family."

"JUST two days ago, I gave a fibro friend of mine your website! I told her how wonderful you are and all the people. Oh, I have tears forming in my eyeballs...hard to read the screen now. How much I will miss you! You have loaded my mind with wonderful information and HOPE regarding fibromyalgia and chronic fatigue syndrome. Please, please don't say that you are duplicating the efforts of other sites, who are doing a "FAR" better job than you! That is just not true! And I will bet you get lots of emails just referring to that statement alone, so you just take credit where credit is due! Dominie, God gave you the ability to stay online as long as you did and He did it for a reason...does He not do everything for a reason?????? I believe He does. He picked you, YOU, to make up this fabulous, informative, caring, empathetic, loving website!" [NOTE FROM DOMINIE: My site www.fms-help.com will be online indefinitely as a resource for the FMS/CFIDS community. Countless loving and patient hours went into it, and I would hate to see all that work go to waste. Plus, many readers contributed their thoughts to the site and my newsletters, so their insights and information will remain as well.]

"I HAVE COME ALONG WAY BECAUSE OF YOU AND IT MEANS ALOT."

"This is Tom. I am much too sick to advocate for patients anymore, but I do want to thank you for your EXCELLENT efforts over the past decade. These conditions (ME, CFS, FMS, GWS, MCSS and others) are sadly growing exponentially around the globe. You have contributed much to our knowledge base and I hope you can keep your info up on a server. If not, let me know, and maybe our little group can help to keep the site going just as a static site. People are desperate for info, and I think you write in a clear, concise and cogent style, and this great work could help millions of people around the world. There are now many good sites. when we started there was barely a dozen! So I can empathize with you. All the best in the rest of your life! God Bless YOU!" [NOTE FROM DOMINIE: I plan to keep my site www.fms-help.com online indefinitely. The recent newsletters are at www.fms-help.com/newsletters.htm and there's a SEARCH BOX on most of the pages on my site to help readers look for specific information. I plan to add new information as I can.]

"I just want you to know that you have been my Fibro information for a very long time, and I could never repay you for what you have meant to me."

"I understand what you are saying and it saddens me that I will not be hearing from you on a regular basis. But, there is only so much of us to go around, and there are far too many takers and not enough givers.Your efforts have been extraordinary, and appreciated by so many people. If you ever get the 'itch' to get back involved, we at [organization] would love to take you on board and tap into your expertise. Perhaps consider combining our forces? Just a thought that might help you keep involved, but not committed to quite as much time."

"You have been a great source of support. Thank you for everything you have done for us. I'm glad you're not going away that easily!"

"I will miss your our monthly get-togethers as I read your newsletter, but I think you have done over and above what anyone would expect. You have helped me a lot in my struggle with Fibromyalgia."

"There must be many like myself, who has over the years read and gained more understanding and comfort and that we are not alone with FMS. I think if all those who gained in some way from your site cheered at the same time, I am sure you would realise you have been much appreciated and the earth shook! Many thanks, Dominie. You have made a great difference out there."

"NOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!! You can't go! Do you know how much I'll miss you? And my groups? They LOVE your newsletters! Can't wait to get them each month & they're my 2 group's favorite newsletters! Do you know what they're going to say when I tell them you're stopping them?!?!?!?!? I know & realize you really do need to take care of yourself. It's just the selfishness in me coming out & the thought of the selfishness I'm going to hear from my groups that I'm thinking of right now, but you take care & PLEASE! if you can, stay in touch!"

"Thanks, Dominie, for all your support over the years. The information I received from you is without price. God will richly bless you for helping so many others. I am sure your family will be glad to have you back. Truly your information is priceless. I thank God for your family that allowed you to do what you did for so many countless of us." [NOTE FROM DOMINIE: Yes and AAAAAMEN! My husband, Donnie, has been SO VERY SUPPORTIVE of my work, although at times he was aggravated by the amount of time I spent at the computer because of its negative effect on my health and our finances. I plan to give Donnie more of my undivided attention in the future. He has picked up the slack around the house for years now. I appreciate him soooo much. Donnie deserves a round of applause! CLAP, CLAP, CLAP!!!! Our picture is at www.fms-help.com/church.htm.]

"On behalf my friend who suffers greatly with FMS/CFIDS not to mention asthma, for whom I provided print outs of your various mailings, I want to thank you for the informative service you have provided. Blessings upon you and your family."

"Amazed you haven't vacated sooner. Wondered awestruck at the energy you project with your newsletteers. You certainly have given us a universe of resources & support. Thank you & wishing you wellness & contentment."

"I just want to say 'thank you' for your many years of writing the newsletter. It's people like you who have made our disease more well
known. At least now most people have an idea of what it is, even if they can't spell it! I found your site www.fms-help.com a couple of years ago and am impressed with all the information on it."

"Thank you for being the wonderful person you are. You deserve to enjoy each day to it's fullest. Always take time to smell the flowers and enjoy your day, even if it's just sitting and meditating. I do a lot of that. I will miss your newsletter, but I understand. Life is too short not to enjoy. You have been a tremendous help to me." [NOTE FROM DOMINIE: I look forward to enjoying more sunsets (NOT sunrises...ha!), more butterflies and flowers, more blue skies with fluffy white clouds, more time with my family, and more time to worship the Lord in meditation, prayer and adoration. I thank Him for coming to my rescue many times when huge waves of disaster threatened to extinguish my life. I give all glory and honor to Jesus for any good that has come from my life and work.]

"Thank you for all your years of hard work and So Much information. I myself totally understand about getting away from the computer more. I had to do the same thing. Just so I could live also."

"I am writing to thank you for all the time you gave to the newsletter, for the help, for the information and also the caring that you have shown to us fellow fibro sufferers, I will miss your newsletters." [NOTE FROM DOMINIE: I WILL MISS YOU ALL TOO!!!!!!! I PLAN TO KEEP WORKING ON MY SITE AT www.fms-help.com, SO PLEASE COME BY OFTEN TO SEE WHAT'S NEW!]