CFlDS Treatment Options

Charles Lapp, M.D. has practiced in North Carolina since 1978. In 1988, he joined Dr. Paul Cheney's CFIDS clinic and in 1995, opened a CFS/FM consultation practice. His objective in lecturing to patient groups is to review all the recognized therapies for CFIDS (CPS and FM) and evaluate them for safety and efficacy. He uses "The Stepwise Approach" to treatment: Education (letting the PWC know they're "not dying and not crazy"), Activity ("the more you exert, the sicker you feel", "balance light activity with bed rest", Nutrition, Vitamin and supplements, and Specific Symptomatic and Supportive Therapies. These are essential, he feels, as "steps to recovery," Dr. Lapp feels, with time, nature will heal every PWC.

Under activity, Dr. Lapp stressed the importance of good posture since poor posture "leads to nuchal or bitemporal headaches, tension at (the) neck and shoulders, and atypical breathing." Most PWCs breath through the chest and must learn good posture and abdominal breathing.

Stretching exercises he advocates are simple stretches such as "cherry picking" (pretend you're reaching up, alternating arms, to pick cherries from a high branch), head rolls, leg stretching, and shoulder shrugs. Also recommended is yoga or tai chi.

Physical modalities include cool to hot poets where each is used alternately on the painful area, spray and stretch using cool water for tightened muscles as you stretch them, massage (he noted that cranial/sacral therapy was "particularly good"), and a good acupuncturist (if, after 5 or 6 sessions, it doesn't help, find another acupuncturist). TENS, ultrasound, and cold lasers can also benefit painful muscles, 

Hydrotherapy, a vertical floatation therapy that essentially cools your core temperature and increases blood volume, is helpful. This was introduced by Dr. Cheney. PWCs can also benefit from soaking in a bathtub for 15 minutes

two or three times weekly, "but get a thermometer and get the temperature up to about 90 degrees, which is still less than your body's temperature. CFIDS "is a vertical illness," Dr. Lapp said, where the PWC feels worse when upright. "Hot showers make you feel weaker because they up-regulate the cytokines," so avoid hot, hot showers.

Interval exercise is low level exercise. "If you overdo, you'll relapse." Dr. Lapp cited a study by Dr. Natelson's research team and said, "I highly recommend low level exercise" where the PWC exercises for 3 minutes or so and then rests for the same amount of time and tries to slowly increase the time. Using weights or walking on a treadmill are two examples of low level exercise.

Nutrition includes a prudent carbohydrate-based diet with fresh fruit and vegetables. The light meals should always avoid sugar, coHeine, alcohol, Nutrasweet, and tobacco. Some may find it necessary to avoid dairy and/or wheat. Avoid milk, ice cream, and cheese for five days to test for this. "If that doesn't work," he said, "try low gluten for five days." 

Dr. Lapp has found vitamin and mineral deficiencies differ with every PWC and change often even with each individual PWC. He advocates a high dose of vitamin B12 that is 12X the normal dose (i.e. 2 to 3,000 mg. weekly) for a few months to see if that helps. CO-Enzyme Q10 can help 10-15% and a good multivitamin with minerols should be taken. Omega-3 and -6 fatty acids interfere with the inflammatory process "and can help take the 'edge oR pain.'" Amino acids often help and can be tried every few months using the least expensive mixture you can find,

Turning to symptomatic therapy, Dr. Lapp said, "sleep is the most important one to address." One of the best things that he's found is a low dose of doxepin (about 10 mg.) along with Klonopin (0.5). He's also found 50 mg. of Trazadone nightly can help if there's intermittent wakening. If you don't have severe problems sleeping, try valerian root, Excedrin PM, or Tylenol PM. Melatonin (3-5 mg.) can be helpful, but not for children with CFIDS. Combine melatonin with light therapy by getting as much light as possible for 3 or 4 hours when you first awaken. Melatonin is also helpful trying to readjust your body clock. tf none of these work, he turns to hynotics that are related to Valium

Therapy for central activation involves trying to increase seratonin levels. He suggest SSRls, Prozac, Zotoft, Paxil, or dopamine agonists such as Weltbutrin. To control headaches which tend to be pressure-like, he tries Diamox (125-500 mg. one or two times daily) to release excess fluid from the broin. If this doesn't help, Dr. Lapp tries calcium channel blockers. For migraines, he tries Esgic, Fiorenal, Midrin, and lidocaine or DHEA sprays for the nose.

Pain (myalgias and arthralgias) ore addressed with NSAIDS, analgesics, Ultram (a non-narcotic analgesic), and magnesium sulfate injections one to two times weekly to address the "searing ache" he calls "fibropain." He's also an advocate of the diet treatment "Phen-Fen" (lonamin and Pondiman), which works particularly well for dieting and reduces the pain of FM. He's used Oxytocin in pregnant women which increases blood flow and also helps with cognition and vision. As a last resort, he uses IV Lidocaine and Katamine.

"Would you believe," asks Dr. Lapp, "thot there is one treatment, currently available, that has withstood the test of peer reviews That is fomiliar to most practicing physicians, inexpensive, safe and easy to take, and works in 25 to 50% of cases' No, it's not Ampligen....not even six weeks in Maui, but just salt therapy! When the PWC stands, they get a false signal to the brain to release more epinephrine, so you get less blood and feel worse. Some actually faint!" This is known as NMH (neurally mediated hypotension) that affects most (or all?) PWCs. Volume expansion and an adrenergic blockade is used: water ( a lot! ), 2-6 grams of salt (a gram is about a teaspoon), and Florinef, a beta blocker, or disopyramide. He prescribes Norvace, but if you have normal or high blood pressure, be carefull.

Under "New, unconventional, or investigational," Dr. Lapp includes IV Gamma Globulin, which he reserves for the very, very ill. Kutapressin is an extract of pig's liver that works as an antiviral and immune modulator and helps up to 75% with a 30% chance of full recovery. The shots are expensive, however, and they hurt! Ampligen still has yet to prove itself in tests, but he is anxious to be an investigator for this drug. Amphetamines are also in this category such as low doses of Ritilin, the lonomin of Phen-Fen, and Dextroamphetamines. One of these last is Cylert. These are used because most PWCs hove stow brain waves. When they are wide awake, the brain still acts like it's asleep, so the above con give o PWC energy and help them to think clearly. The Ritalin is used in smaller (1/3) doses than the dose usually used for ADD (attention deficit disorder). Antibiotics are also under this category and are just being studied. 

Preventative care includes avoiding hot baths and sunbathing, having a bone density test (DEXA, a bone scan) if you are at risk for osteoporosis, manage your cholesterol, and have an annual examination that documents your progression or regression, reviews medications, and lab tests that include a CBC (complete blood count), chemistry, ESR, TFT, and UA since thyroid problems tend to be common in PWCs. If you've had flu shots with no ill effects, then have one! However, Dr. Lapp did a study on them with PWCs at Duke University and found that many patients don't convert, so the shot does them no good and mony relapse from the shot, "so you get an adverse effect and no benefit" Dental check-ups are also part of preventative care since PWCs tend to have dry eyes and mouth. This leads to acidity in the mouth. Dr. Lapp suggests using bicarbonate (baking soda) based toothpaste. Perpetuating factors that should be addressed are psychological problems, allergies, and asthma. Stressors such os family dysfunction, financial pressures, and disability issues should try to be resolved. Treat reactive depression, avoid allergens or toke allergy shots, and treat yeast infections aggressively. Although yeast is not a causal factor, PWCs are prone to severe yeast infections which worsen their CFIDS. Take a prescribed oral medication for yeast infections because topical won't help.

Addressing alternative therapies, Dr. Lapp says some hove scientific merit, are not considered risky, but controlled studies ore either lacking or conflicted. Those that have merit are acupuncture, massage therapy, and chiropractic. Others are:

  • Vitamin B12 
  • L-lysine 
  • Anti-candida therapy
  • Amino acid supplements
  • Garlic 
  • Pyridocal-5-phosphate
  • Sylimarin (milk thistle)
  • Neuromuscular therapy chiropractic
  • CoQ10 
  • Melatonin 
  • EPO/EPA (fatty acids)
  • Echinacea 
  • Valerian root 
  • L-or reduced-glutathione
  • Acupuncture 
  • DHEA 
  • Proanthrocyanidin (pine or grape)
  • Vitamin C 
  • Gaufenisin 
  • N-acetyl Sistine 
  • Massage therapy

The list of therapies that have no strong scientific support or benefit but are probably not risky include the following:

  • Gingko biloba 
  • St. John's Wort 
  • Thymus extract 
  • Homeopathy 
  • Shitake mushroom extract
  • Cat's Clow 
  • Essiac tea 
  • Magnetic therapy 
  • Quercetin 
  • Adrenal extract 
  • Blue Green Algae 
  • Aroma therapy
Ones to avoid that could be risky include the following:
  • Peroxide infusions
  • Ephedra (false energy) 
  • CaReine (false energy)
  • Chelation therapy Gotu Kola (false energy)
  • Mushroom or fungus tea
  • Germanium
  • Ma huang (false energy) 
  • Enemas

PWCs may request a hand-out of an explanation of hydrotherapy or an outline of this treatment perspective by writing to:

Charles Lapp, MD
Hunter-Hopkins Center, PA
10724 Park Rd., Ste 105
Charlotte, NC 28210

Physicians treating PWCs may call Dr. Lapp with questions. His clinic will not accept Medicaid or Medicare patients and not all treatments will be covered by insurance. Dr. Lapp said, "Only 1/3 get reimbursement."

Dr. Lapp's treatments have been culled from many experts, whom he holds in high regard, including Drs. Jay Goldstein, David Bell, and Paul Cheney. He calls Dr. Goldstein, "A great guy. He probably has done as much for CFS as anyone. He has lots of good treatments." Dr. Lapp is currently involved in 14 clinical trials including one addressing pregnancy and CFIDS. 

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606