UPCOMING MEETINGS 

JULY                                                                                            AUGUST

NIGHT MEETING Monday, July 12, 1999 7:00-8:30 pm  Moses Cone AHEC Meeting Room 29 Topic: General Discussion	NIGHT MEETING Monday, August 9, 1999 7:00-8:30 pm  Room 41 Topic: Pain Management/Goldstein Protocol Dr. Allan Spanos, MD, Chapel Hill, NC Published in the CFIDS Chronicle
DAYTIME SUPPORT GROUP Tuesday, July 20, 1999 1:30-2:30 pm Jamestown United Methodist Church Topic: General Discussion	DAYTIME GROUP Tuesday, August 17, 1999 1:30-2:30 pm Jamestown United Methodist Church Topic: General Discussion

A CHAT ROOM founded by committee member, Mary Pretlow, is located at http://ncchem.com/safe-arbor. Focus: support the Christian community in prayer for CFS/FMS/MCS sufferers and related issues, but open to all. Our Support Group is also on the Web, courtesy of Earle Phillips at the NC Chemical Sensitivity Website ( http://www.ncchem.com); committee member, Christine Hagar's NEW CFS/FMS/MCS WEBSITE address may be found at ( http://members.xoom.com/PlopFizz)

Trinity Group First Thursday of month at 1:00 pm, Trinity Methodist Church, Trinity
Rockingham County Group Third Thursday of month at 7:00 pm, Morehead Hospital, Eden
Burlington Group First Monday of month, Faith UMC: Myra Jackson (336) 229-7818
Lexington Group. . . . . . . Contact Person: Donna Hall, RN (336) 224-0156

MAIN MEETING DIRECTIONS ... Moses Cone's Adult Health Education Center (AHEC) is located at the hospital. Turn off Wendover Ave. in Greensboro onto Church St., then left onto Northwood, then right at the next light, and the Parking Deck will be on the right. The AHEC entrance is located beside the parking deck at the top of the circular drive.
--------
Because both CFS, FMS, MCS, GWS, Porphyria and Post-Polio Syndrome have  overlapping symptoms, Brainstorms addresses them all at times as of concern to each of us. 

God's best always!

Margaret

The Environmental Health Network of California has filed a petition with the FDA to have the perfume Eternity declared misbranded. Comments to support this petition may be filed with the FDA.

 

 It is very important that this petition is supported. It is a chance to make our voices heard on an important health issue that not only affects us but millions of others.

 

An analysis of the perfume Eternity by Calvin Klein revealed substances that have harmful health effects and have not been adequately tested for safety. The substance at the highest level in the product had no readily available safety data on it. Two were listed as respiratory sensitizers, meaning they can cause a person to become allergic to them and develop asthma. At least five had central nervous system effects. At least two were suspected carcinogens and one may cause fetal effects. Virtually all are general irritants and the chemical, physical, and toxicological properties have not been thoroughly investigated.

 

No matter what the outcome of the petition and the final decision of the FDA, filing comments will put on the record "fragrances cause health problems..It will put the industry on notice that this issue will not go away and they will have to address it. The more comments that are submitted, the louder our voices. Input from each of you is critical to make this effort a success.

 

You do not have to have an adverse reaction to Eternity in order to support the petition. If you think products that have not been adequately tested should have the warning label as required by law, that is reason to submit a comment. The comments may be very brief or you can give as much information as you like. Just remember anything that you write will become part of public record and accessible by others. Comments can be submitted individually, this is the most desirable. However, in situations where individuals may not write but would be willing to sign saying they support the petition, a form letter that people sign can be used. Anonymous comments are not accepted.

 

The petition number must be included on all comments for identification purposes. Comments may be filed by mail, fax, or e-mail regarding Docket Number: 99P-1340/CP 1. Comments are to be sent to: Dockets Management Branch, The Food and Drug Administration, Department of Health and Human Services, Rm. 1-23, 12420 Parklawn Dr., Rockville, MD 20857, FAX: 310-827-6870, E-mail: fdadockets@oc.fda.gov

 

 Please take the time to support this petition. For information on health effects of fragrances, visit: http://www.ameliaww.com/fpin/fpin.htm

 

GOVERNMENT RESPONSE TO MAY 12 ACTIVIST

LETTERS

To Ann Simmons

Thank you very much for contacting me about chronic fatigue and immune dysfunction syndrome (CFIDS). I appreciate your interest in public policy and only regret that it has taken me so long to respond. I recently met with several North Carolina members of the CFIDS Association of America. We discussed the current issues surrounding CFIDS including: changing the "chronic fatigue syndrome" name, increasing research money, reimbursing the misspent Centers for Disease Control (CDC) money, and expanding heaalth care provider training on the disease. My office also received the Inspector General’s report on the CDC’s use of CFIDS research money. As you may know, I am a member of the House Commerce Committee and the Commerce Health and the Environment Subcommittee. I am also Vice-Chairman of the Oversight and Investigations Subcommittee. I am very concerned about the Inspector General’s report on the CDC’s misuse of CFIDS research money and, using my position on the Oversight and Investigations Subcommittee, I plan to examine this situation carefully. Thank you again for your correspondence. Please do not hesitate to contact me in the future on this or any other issue.

Sincerely,

US House of Representatives

Richard Burr

 

NET NOTES

http://www.pain.com

The Environmental Health Network of California has filed a petition with the FDA to have the perfume Eternity declared misbranded. Comments to support this petition may be filed with the FDA. It is very important that this petition is supported. It is a chance to make our voices heard on an important health issue that not only affects us but millions of others. An analysis of the perfume Eternity by Calvin Klein revealed substances that have harmful health effects and have not been adequately tested for safety. The substance at the highest level in the product had no readily available safety data on it. Two were listed as respiratory sensitizers, meaning they can cause a person to become allergic to them and develop asthma. At least five had central nervous system effects. At least two were suspected carcinogens and one may cause fetal effects. Virtually all are general irritants and the chemical, physical, and toxicological properties have not been thoroughly investigated. No matter what the outcome of the petition and the final decision of the FDA, filing comments will put on the record "fragrances cause health problems..It will put the industry on notice that this issue will not go away and they will have to address it. The more comments that are submitted, the louder our voices.

 

Input from each of you is critical to make this effort a success. You do not have to have an adverse reaction to Eternity in order to support the petition. If you think products that have not been adequately tested should have the warning label as required by law, that is reason to submit a comment. The comments may be very brief or you can give as much information as you like. Just remember anything that you write will become part of public record and accessible by others. Comments can be submitted individually, this is the most desirable. However, in situations where individuals may not write but would be willing to sign saying they support the petition, a form letter that people sign can be used. Anonymous comments are not accepted. The petition number must be included on all comments for identification purposes. Comments may be filed by mail, fax, or e-mail regarding Docket Number: 99P-1340/CP 1. Comments are to be sent to: Dockets Management Branch, The Food and Drug Administration, Department of Health and Human Services, Rm. 1-23, 12420 Parklawn Dr., Rockville, MD 20857, FAX: 310-827-6870, E-mail: fdadockets@oc.fda.gov. Please take the time tosupport this petition. For information on health effects of fragrances, visit: http://www.ameliaww.com/fpin/fpin.htm

 

GOVERNMENT RESPONSE TO MAY 12 ACTIVIST LETTERS

To Ann Simmons

Thank you very much for contacting me about chronic fatigue and immune dysfunction syndrome (CFIDS). I appreciate your interest in public policy and only regret that it has taken me so long to respond. I recently met with several North Carolina members of the CFIDS Association of America.

We discussed the current issues surrounding CFIDS including: changing the "chronic fatigue syndrome" name, increasing research money, reimbursing the misspent Centers for Disease Control (CDC) money, and expanding heaalth care provider training on the disease. My office also received the Inspector General’s report on the CDC’s use of CFIDS research money. As you may know, I am a member of the House Commerce Committee and the Commerce Health and the Environment Subcommittee. I am also Vice-Chairman of the Oversight and Investigations Subcommittee. I am very concerned about the Inspector General’s report on the CDC’s misuse of CFIDS research money and, using my position on the Oversight and Investigations Subcommittee, I plan to examine this situation carefully. Thank you again for your correspondence. Please do not hesitate to contact me in the future on this or any other issue.

Sincerely,

US House of Representatives

Richard Burr

NET NOTES

http://www.pain.com

http://chronicfatigue.about.com

http://abcnews.go.com/sections/living/DailyNews/fibromyalgia980408.html (ABC News/GMA on Fibromyalgia)

http://www.planetrx.com/product/rx (Order meds, "Ask the Pharmacist, check for drug interactions, check drug prices and define hard-to-understand medical terms.)

http://mrmom.amaonline.com/specialhuggies.htm (will make you feel better!)

http://www.nmss.org (Only 36% of SSA disability applicants are accepted on their first try. The national MS Society says that a higher acceptance rate is achieved when applicants have an attorney from the beginning.)

 

ADDITIONS TO HEALTH CARE PROFESSIONALS LIST

Ketterman’s Pharmacy

Kannapolis, NC; 1-888-305-0007; Fax (704)933-7758 Will compound Dr. Goldstein’s TRH eyedrops and nasal spray

Dr. John McKinney, D.O. Piedmont Internal Medicine, 1632 National Hwy., Thomasville, NC 27360; (336)885-7311

Harvest Life Center 2594 Reynolda Rd., Suite B, Winston-Salem, NC 27106; (336)725-7077

Joy Paige, RN. Colon hydrotherapy; call for free assessment; Christian-based approach, CFS/FMS/MCS literate.

Integrative Therapies Greensboro, NC With a physician’s diagnosis and prescription, health insurance usually covers the cost of their therapeutic massage as physical therapy within individual’s policy limits. ** See ad on back page for contact information.

Center for Rehabilitative Technology

Marie Shear; Adaptive device/headset to aid in telephone conversations. 1-800-726-9119

Share, Care and Prayer, Inc. Book, Audio and Video Tape Library Janet Dauble, RN, PO Box 2080, Frazier Park, CA

93225; Lending library: CFS/FMS/MCS, ADD, Electomagnetic Field, Food, Pesticide, etc. Free on loan, with only cost that of postage to mail back in preaddressed container they provide.

 

PATIENT LIFELINES

Melinda Vadas, PhD

Recently I have heard some very negative feedback from our support group members concerning local attorneys who were "helping" members with their SSDI cases - incompetence and lack of real concern and compassion have apparently abounded. I have investigated this matter, and the following is my opinion. I believe the best disability attorney in this state for our support group members—far and away the best—is Maggie DeVries, of the firm Cox, Gage and Sasser in Charlotte. Maggie is compassionate, soft-spoken, and has a real concern for and knowledge of our illness (es) and a very sharp knowledge of disability law as it applies to these. Her number (704)342-4200. If you call Maggie, tell the person who answers the phone that you have previously arranged with Maggie to do all of your preliminary work by phone (ordinarily the firm asks client to drive to the Charlotte office; that is not necessary for us.)

Maggie will come to Greensboro for your hearing.

 

If you want to consider an out-of-state attorney, Bernard Kansky, of the National CFIDS Foundation, probably knows more about CFIDS disability than anyone in the country, since his own daughter has been disabled by CFS all her life. It is possible that you might, in some cases, have to pay Bernie’s airfare to NC if it should be necessary for him to appear at your hearing. This does not happen often, but it is a possibility. Bernie’s number is (617)227-2020. Bernie has a personal concern for everyone who has CFS, and for their financial well-being as it relates to the illness.

For those without insurance which covers medication, and poverty line income you may request your physician to fill out brief forms requesting Compassionate Care free medication for three month periods: The drug companies may be contacted by the 1-800 # in front of PDR (Physician’s Desk Reference).

 

AN ODE (OR SOME SUCH THING) ON APPEARANCES CAN BE DECEPTIVE

WHO’D A THUNK? Who ever would have thought that a woman, any woman, would be upset when someone told her she looked "great!" But with CFIDS, suddenly IT becomes an insult, a degradation of our integrity, especially since most of us have spent the day in bed feeling like the living dead, and for our brief foray out into the "real world" we are made to feel like liars and frauds. Frankly we don’t know whether to take IT as a "Compliment" or an "Insult" to our integrity. With our "invisible" illness, as for many patients with multiple sclerosis and lupus, we DON’T LOOK SICK. You look good ... as in you are not dead (though you have had enough "Job’s comforters" to kill a horse. You have makeup on ... to hide the pallor and dark circles. You are currently walking ... after sleeping most of the day.

 

Should we be penalized for trying to make ourselves look less frightening? If we don’t wear makeup and go out disheveled, we will be accused of being "depressed."

 

Should we refrain from trying to cover up multiple bruises and put a bit of color in our pallor by using the "indoor sun" lotions once in a great while? If not, will we be accused of "staying home and laying out in the sun," and asked if we have "gone back to work yet?" Should we not wear the wig or desperately try a perm to increase the perceived volume of thinning hair due to the illness or meds or whatever? Should we stop going to Goodwill to find the $1 GAP shirts (true story) so folks won’t say, "She dresses so nice, she must not really have poverty level income." No, I think, mayhaps in spite of all of these things, I will choose to retain what dignity God created me with, and stop apologizing or feeling defensive at the ways He has allowed me to appear "normal" in spite of my circumstances. I think that I will wear what little make up I do, as so many of us do, as a badge of courage. And I think that perhaps, in love, it is time to confront the confronters with the true deceptiveness of appearances. Maybe you can show this to friends and family

to enable them to "truly see." The following is a real note, from a real (I emphasize) genuine person.

 

Margaret

It was so good to see you on Saturday. you look well, although from what I’ve read about CFS, that doesn’t mean you feel well! I read the article on CFIDS in Woman’s Day and I’ve torn out my copy for you. God bless you! Love, Kim Livengood

 

CFIDS CHUCKLES

"My crosses are wired." Instead of "my wires are crossed."—Joy Paige, minister’s wife and RN

 

GREAAT IDEA!

Great idea! What would you give for your doctor/s to understand your illness? What price would you pay for your friends to understand your illness? What price would you give for your church/synagogue to know what you have? What would it be worth for your children, in-laws and spouse to have an inside view on what you are courageously endeavoring to fight? If you are like most of us, it would be a priceless gift. An idea was born in my family, that might benefit yours as well. As I sent a newsletter to a loved one, and to a physician, lights starting turning on as a window was given to this world. They began to understanding the nonunderstandable, have a frame of reference that made sense and begin helping in the search for treatments. $15 a year is a small price to pay. So, when you are considering renewing your subscription, or perhaps giving them a gift, let us know, and we will send a gift card to them to start their own individual gift subscription. Contact Marvina Powers to begin a life-changing event ... yours.

 

PEARLES FROM EARLE

Earle Phillips, NCCIN

Hi all ... I thought it would be good if I shared my thoughts about our June support meeting. Monday night in Jamestown, there were probably more than a hundred people that came to meet Dr. Lapp. Our audience was made up of more persons with CFIDS and Fibromyalgia, but the connection with Chemicals was clear. Dr. Lapp was one of the most pleasant doctors I’ve met. We could have gone on for hours. I must say I agree with one of our members that Dr. Lapp is one of the best doctors for persons with CFIDS and FM. I’m also impressed with the research work Dr. Lapp is doing. However, my real impression was with the patients in the group and their communication with Dr. Lapp. Our MCS groups from across the country could take lessons from the Greensboro group. (Greensboro, Jamestown,  Archdale, Burlington, Lexington, and Eden) There are different illnesses but still they are very good at coming together with an open mind for the others.

 

QUESTIONS AND ANSWERS: Excerpts from June Meeting

Dr. Charles Lapp, Hunter Hopkins Center, 10344 Park Rd., Charlotte, NC;

(704)543-9692

 

Q: Chronic pain in legs at night

A: Typical FMS, for an hour each morning. Without any rest gelling occurs in muscles, they become stiff and sore, and you wake up stiff, sore, and foggy. Medical term: dysania ® Recommendations: Take long-acting Naprosyn, Bayer aspirin, Daypro or Lodine (Qycotin, MSCotin if need stronger meds). Stay in bed one hour after waking; loosen up. Try coffee, warm shower, not too hot or cold.

 

Q: Dosage for SSRI’s

A: Serotonin and dopamine are low, causing irritability and low pain threshold. R: SSRI’s that are most successful: Prozac, Zoloft in small doses give you energy; Paxil and Effexor are sedative. For low dopamine - low doses Wellbutrin.

 

Q: Side effects of dry mouth/dry eyes

A: Medical term is SICCA, one of the overlapping side disorders like MCS, ICS, IBS. You can’t wear contacts, experience dry mouth, teeth acidic, deterioration of teeth R: 64 oz. water daily; lubricating drops in eyes - use gel, it lasts longer - implants in eyes. Using mints, gum and celery stimulate salivation, use toothpaste w/baking soda/helps restore alkalinity to acidic mouth. Request your doctor use medications that are less drying. Trazadone is good for sleep problems. Incontinence drugs can be very drying.

 

Q: Do you recommend colonics? 

A: I don’t usually recommend. There is some evidence that we have more toxins in system however. If you are constipated, waste doesn’t move and clogs up system. If "slow on the move;" get help w/colonic. Don’t use coffee or soapsuds enemas - they extract lot of fluids and we are low on fluids.

 

Q: Immunizations?

 A: Not enough data yet. Some have fallen ill or relapsed following vaccination. Rubella, influenza, Hepatitis B seem to be the main problem ones. Tetanus, diphtheria, rabies, or killed vaccines, pneumo vax seem to be OK. Take Hep B if work w/blood; If you need take, do so, but recognize that vaccine may not take. At Duke, Dr. Buckley discovered that CFS patient’s body did not seroconvert and make antibodies - no benefit to vaccine because body doesn’t make antibodies.

Q: If a lifelong history of CFS, is there a peak?

A: 12% of people improve for first 5 years; after then level of improvement levels off less. 2 patients totally recovered after 11 and 22 yrs.

 

Q: What about Generic NADH (brand ENADA) supplement?

A: It is a compound in cells, except red blood cells which converts to ATP (energy source for cells). The theory is to increase NADH 5 mg. ea. AM; revised instructions are 10 or more mg. per AM on empty stomach. Wait 15 to 30 min. Georgetown study 30% had 10% improvement. Won’t harm. $40 a mo. may take at least couple of months.

Q: Is there a new blood test for FMS? 

A: RNaseL is one in experimental stages. Also Connie Knox viral researcher at Harvard October conference says larger # of patients w/CFS have HHV6 than general population; $140 test; reference lab $60. Same w/chlamydia and mycoplasma CMV, EDV, Lyme - blood titers elevated because immune system surveillance part is low. They reactivate because not kept under control/i.e. chicken pox-shingles. This is not cause of CFS/FMS - side effect. RNaseL test learned from ampligen, that 2 anti-viral systems are turned and locked on in CFS. PKR system, and RNaseL system - works by dissolving RNA in viruses. System makes you gobble up your own RNA - toxin poisons cells and makes protein, messenger of cells. Ampligen turns off RNaseL Dr. Bob Suhadolnik has found highest RNaseL levels in AIDS. CFIDS, and others are lower. Makes another molecule ½ weight of RNaseL; only found in CFS and some cases MS. Looks like may be marker. Problem: test hard to do, hasn’t been approved in USA, available in Belgium and if you  have CFS longer (5 to 10 yrs.) levels fall. Good marker early on in disease.

 

Q: What are electrical currents going off while you sleep?

 A:Popping, flash of light in brain, jerking, tongue thrust out, involuntary movements common. Central Nervous System gets hyperexcitable, sensitive to smells, even perfumes, hypersensitive, mini-seizures in mid-brain. Use anti-seizure meds Klonopin, Depakote, Neurontin 300mg 2 or 3x day (.05 to 1mg up 3 x day). Can’t measure these mini-seizures on EEG on skull, but has been done by using electrodes in mid-brain.

 

Q: Relationship between CFS & FMS?

A: Very much related and on a spectrum. CFS: diagnosed by primary care doctor. Go to rheumatologist, find tender points: FMS. Same illness, but over years CFS associated with cognitive, fatigue, flu ...FMS associated with aches & pains, sleep, joints. Most patients somewhere in between. Most patients cross over.

 

Q: Blood pressure and CFS (NMH)?

 A: Autonomic nervous system (ANS) doesn’t work very well. Controls autonomic functions - hot flashes, goose flesh, pupils small. 97% of CFS at Johns Hopkins had ANS dysfunction; when treated, CFS often got better ... later studied FMS. Low BP, dysautonomia. Two kinds NMH. (1) Stand up, 1 pt. or 2 to legs, drops to legs BP, heart signals brain beat stronger - w/in 3 or 4 beats normal again. With CFS, heart and brain miscommunication-adrenaline gets released also (rush) overwhelms brain, and brain tells heart to slow down, difficult to stand periods of time, shift back and forth, lean on grocery cart. (2) SOTS Symptomatic Orthostatic Tachycardia. If don’t faint - heart beats at least 30 beats faster, all symptoms worse due to: (a) low blood volume (b) low total body water, functionally dehydrated.

Many patients have problems w/venous constriction; muscle - have inability to tighten up those veins, legs can get blue. R: 64 oz. water (b) 2 to 3 tsp. extra salt daily or salt tab © Beta blocker atenolol to block adrenaline burst; midodrine (proamatadine) raises BP; Indocin (arthritis drug); ½ spoon Sudafed syrup (small amount). Works cheaper/best to raise BP. Ritalin.

 

Q: Supplements?

A: Never seen one cure anybody. Treat BP problem. Ampligen 50% improved, point return to work/school. Fill gap in nutrition. Some scientific base/safe... a. Multivitamin, magnesium, NADH, St. John’s Wort, Gingko Biloba... Not scientific basis ... b. cat’s claw, milk thistle. Dangerous: c. germanium (killed a # of people), IV peroxide, Chinese mushrooms (20 deaths). CFIDS@Charlotte.infinet - drop card or e-mail if you want list of supplements. Health Resource Buyers Club-years ago couldn’t get supplements. Rich Carlson got together patient co-op, buy wholesale and sell back w/little markup. Profit goes back to CFIDS Assoc; over $1 million for research.

 

Q: Dr. St. Armand’s Guafinesin protocol?

A: Idea no good anymore. Dr. Armand has a couple of kids w/CFIDS who seem to have gotten better. Spec. addresses buildup of calcium in cells. Guafinesin can remove calcium from cells. Dr. Bennett at Oregon Sciences set up study w/no one getting better; backed off.

 

Q: Patient has dysautonomia and Coronary artery disease. Could medicines for latter affect NMH?

A: Diuretics contraindicated, some calcium channel blockers could make things worse.

 

Q: Exercise?

A: No walking/swimming. Relaxing and getting heart rate up. (EDS. NOTE: Hope you can interpret these exercise notes better than I can!) (1) Everybody - stretches - muscles tight and short. Posture exercises: head up, chin in 2x day. Muscles in head/shoulders exercised by (a) cherry-picking on each side, (b) neck/chin to chest/back, © head to right/left. Shoulder shrugs - dirty bird. Scapula squeeze - rowing. Lean thru doorframe. Deep breathing - most patients chest- breathers, tighten neck muscles/short of air, dizziness. Yawning - another way to get air into lungs. Learn abdominal breathing. EX: 5 min. before muscle/ab starts changing (flare). Rest 5 min. Some people really sick, can’t do anything at all, or when in a relapse 1 min. or 2 of exercise only at low level intervals.

 

Q: What about B-12? 

A: Dr. Paul Cheney and I discovered its helpfulness in CFS by accident. In NEJM, study showed old people w/normal B12 levels could use supplementation to aid with resolution of fatigue/numbness & tingling/cognitive impairment. They decided that fit the CFIDS prototype also, and tried experimental 2000 mgs 2 x wk. minimum. Cyanocobalamin didn’t sting. The B-12 was normal in blood levels, but not getting into cells (low functionally) so they tried-forcing B-12 into cells that couldn’t get there with normal blood levels. Safe, don’t go over 9000 mg. per wk; can get hyper or incurable acne.

 

Q: Is Ampligen available? 

A: Ampligen helps AIDS, too, & CFIDS. AIDS and CFIDS advocates are pushing FDA heavily; hopefully in yr. or two it will be available to general public. 

 

Q: Physical therapy? . 

A: Based conclusion on New Brunswick, RI; SueAnn Cisto, NIH grant, Calif. Exercise - Can’t do too much or too little. Balance - common sense. Thera Bands; balls; 1&2-lb dumbbells. Massage - work w/muscles; allodynia - skin hurts to touch; use mineral oil, gently rubbing; acupuncture; lymphatic drainage; "coathangers" for neck & shoulder pain - cranosacrial therapy; $50 seat pads w/heat & motors - relief found at Brookstone’s. Massage therapist, usually not covered by insurance. (Eds. note: see Integrative Therapies; have been successful in getting ins. coverage for this.)

 

Q: Is it helpful to raise levels of amino acids(more serotonin), magnesium, salt, tryptophan; fill deficiencies with natural things?

A: Generally low : B-vitamins, B-12; A & E anti-oxidants, magnesium and potassium, low amino acids but not critically so, arginine, taurine, serine. Research group in Australia research aminos, recommend good multi-vitamin, good mineral supplement. Mag/cal: reduces pain of FMS. Magnesium/maleate 200 or 300 mg. elemental magnesium 2 x and 3 x day.

 

Q: What about the brain? Can you fix it? 

A: Geez, how about the crisis in Kosovo? You want me to fix that too?! JOKE! Regarding brain waves (1972 sleep study by Dr. Harvey Moldosky, Toronto, found at night little awake curves and patient wakes up. There are 4 basic brain waves: Delta (deep sleep), theta, beta, alpha (wide awake/concentrating). Patients w/FMS never get in deep sleep and have vivid dreams/restless/alpha intrusion.  Bass-ackwards: wide awake their wave patterns looked asleep; asleep their brain wave patterns looked awake. Successful therapy: (hypnotizes); sedates, anesthetizes the brain at night; Ambien, Toaeadone. In the day, ritalin, low dose amphetamines, keep brain awake. 

 

Q: How can we find good medical treatment with so little knowledge on the local level? 

A: Your choices for medical treatment are to go to Charlotte or one of the other CFS Clinics, become informed and be your own physician working with a local  primary care doctor. Internet sources can be good, but be careful of the false information circulating. It is best to get an area doctor to work w/you, and share supportive literature with him/her.

(Eds. note: See our Physicians’ List in the January/February edition or on the internet at the NCChem website.)