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Our office has worked with more than 1000 persons who have Chronic Fatigue Syndrome (CFS), including several hundred with severe CFS.
Richard Podell, M.D., medical director has lectured about Chronic Fatigue Syndrome to many professional and consumer support groups. He has written articles for Redbook, Family Circle, and Bottom Line Health. A clinical professor at Robert Wood Johnson Medical School, Dr. Podell is Principal Investigator for one of the test clinical trials for a Food and Drug Administration approved study of Ampligen, an experimental drug for CFS. (A few places remain available for the Ampligen research study.)
In 2002, the New Jersey Chronic Fatigue Syndrome Association gave Dr. Podell their medical Achievement Award. Dr. Podell has served on the expert committee on CFS for the New Jersey Academy of Medicine and also for the New Jersey State Department of Health. This group recently published a Medical textbook on the diagnosis and treatment of CFS. Dr. Podell also wrote a book on Chronic Fatigue titled, Doctor Why Am I So Tired?. He serves as a medical expert on Chronic Fatigue Syndrome in both New Jersey State and Federal Courts.
Functional Medicine, we believe, creates added opportunities for healing. This holistic, complementary or alternative approach focuses on ways to strengthen the body's own natural healing systems. Much research suggests that better function for any one part of the healing web also acts to strengthen other parts of the system.
Innovative Chronic Fatigue Syndrome Treatments
PROVIGIL is a fairly new drug used mainly to treat narcolepsy, a central nervous system condition that causes profound sleepiness.
A significant minority of CFS patients feel more alert with Provigil. A smaller number also report that their exercise tolerance improves. Provigil is relatively safe. Its positive effects are felt within hours, so it’s certainly worth a brief trial.
BLOOD PRESSURE RAISING STRATEGIES:
Many people with CFS have low blood pressure and/or rapid heart rate.
These worsen if they stand too long. (We call these “orthostatic” symptoms.) This occurs in part because the volume of blood in circulation is too low. Measures designed to increase blood volume or raise blood pressure often help fatigue and reduce orthostatic symptoms. We have many options:
Increasing salt and water intake:
- Salt-retaining medicines (Florinef) or herbs
- (Licorice root) together with potassium
Raising blood pressure:
- ProAmatine, a drug that raises blood pressure
- Tyrosine, an amino acid
- Beta blocker drugs are sometimes useful for increasing blood pressure,
---- even though for most people they are used to lower blood pressure
- Ritalin or Dexedrine can raise blood pressure
-
Epogen/Procrit
– an injection that stimulates the growth of red blood cells ..
AMPLIGEN is an experimental intravenous drug with anti-viral and metabolism enhancing qualities. ...
Individuals interested in either the double-blind no cost Ampligen trial or in self-pay Ampligen treatment should contact Wendy King, R.N., A.P.N., Ph.D., our director of research.
Additional Strategies to Strengthen CFS Healing Systems:
... Support the mitochondria’s ability to manufacture ATP energy molecules.
Options include: Riboflavin, Lipoic Acid, Enada (NADH) phosphatidyl serine, L-Carnitine, Acetyl-L-Carnitine, glutathione, CDP-choline, Coenzyme Q, “adaptogenic” herbs. ...
Biomechanical (body work) therapies:
Effective therapeutic massage and physical therapy techniques for FMS muscle pain go by several names- Structural Integration, Janet Travell, M.D.-style Manual Trigger Point Therapy, Myofascial Release and Deep Connective Tissue Therapy.
Trigger point injections can also help, as can chiropractic adjustment and a podiatrist’s evaluation of legs, feet and gait. Occasionally, acupuncture and laser therapies are useful.
Energy Therapies:
Reiki and magnets are sometimes reported as helpful. ...
Breaking News on HHV-6 Virus , February, 2003
.. Dr. Joseph Brewer, an infectious disease specialist from Kansas City, reported a double blind study in which he claimed improvement for two-thirds of persons with chronic fatigue syndrome, while persons taking placebo did not improve.
Dr. Brewer identified 38 CFS patients who had a positive culture for HHV-6 Virus. Twenty eight received a capsule containing cow’s milk colostrums. The cow had first been specifically primed to make antibodies against HHV-6 virus. Ten patients, the controls, received standard colostrum, without special HHV-6 antibodies.
Treatment lasted six months.
Based on symptom report scores 68% of people treated with anti-HHV-6 colostrum improved by 25% or more. In contrast, none of the “control” patients improved by that much.
For the HHV-6 treated patients the average symptom score decreased from 76 to 41. The control group’s average symptom score increased from 79 to 81. Natural killer cell function scores also improved in the HHV-6 treatment group from an average of 8 units to 54 units. Natural killer cell function for control patients did not change. ...
Dr. Podell’s Perspective on Transfer Factor and HHV-6 Virus:
... Some patients get a mild flu-like reaction when starting the treatment, but that seems to be worst side-effects. Most (but not all) people with cow’s milk allergy tolerate the colustrum. It costs $140 a month. ... Dr. Brewer feels that a three month trial would be reasonable to judge on.
The Bottom Line: I suggest investing in a three month trial with transfer factor, especially if your illness began with a flu-like illness, or if you have swollen glands, flu-like aches, sweats, fevers or other infectious symptoms.
Where to Get Obtain Transfer Factors.
Although many companies are selling a variety of products called “transfer factor”, most are not related to Dr. Brewer’s tested product. Two main suppliers use the material that Dr. Brewer specifically tested:
Immunity Today, 10925 Antioch, suite #100,
Overland Park, KS 66210, tel 913-780-2317.
Formula 560 ... active for HHV-6 A and HHV-6 B.
Immunity Today’s more recent product, Immune Care 64,
is active for both HHV-6 and for EBV virus. Since Immune Care 64 costs only minimally more I think it makes sense to purchase the HHV-6 plus EBV product.
Contact person is Perry Anderson.
Pro Health, Inc, 2040 Alameda Padre Serra, Ste.101,
Santa Barbara, CA 93103, tel: 805-564-3064 ext. 236.
.. the identical HHV-6 product ... but they have added a variety of nutrients and immune stimulating herbs. Pro Health does not have but should soon add the HHV-6 plus Epstein Barr version.
Contact person is Dennis Schoen
Reversing Eight Vicious Cycles
that Block FM & CFS Healing
http://www.immunesupport.com/library/
showarticle.cfm?id=4563&T=CFIDS_FM&B1=EM052307C
2007-05-10
Richard Podell, MD, is a clinical professor at New Jersey's Robert Wood Johnson Medical School. He has special interests in Chronic Fatigue Syndrome/Fibromyalgia, stress-related disorders, and clinical nutrition. Dr. Podell has offices in Springfield and Somerset, New Jersey. For more information, see DrPodell.org.
People with any chronic illness tend to develop a set of self-defeating vicious cycles, which conventional medical approaches too often overlook. My practice places high priority on reversing these self-defeating cycles, as they are major obstacles to healing.
Vicious Cycle #1: Non-restorative Sleep
Both Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS) disrupt sleep quality. Poor sleep, in turn, worsens physical and mental stamina. Poor sleep also increases sensitivity to pain. These, of course, further disrupt sleep.
Lecture: http://www.drpodell.org/improving_sleep_quality.shtml
[See Dr. Podell's lecture on "Improving Sleep Quality Despite Fibromyalgia or Chronic Fatigue Syndrome" - which includes a discussion of 13 principles that should be considered in approaching sleep problems for people with FM and CFS.] ...
{
1. Non-restorative sleep
Nearly all persons with FMS and/or CFS have non-refreshing, non-restorative sleep. This occurs in all or most circumstances: whether you lie awake at night or sleep sleep all the way through; whether or not you have a primary sleep disorder such as sleep apnea or periodic leg movement disorder (PLMD); whether or not you are anxious or depressed; no matter if your EEG tracing while asleep shows sleep architecture abnormalities.
2) A primary sleep disorder.
The data is especially strong for CFS, where somewhere on the order of 10% of patients have a significant degree of sleep apnea. ..
Sleep Apnea
A bed partner can suspect obstructive sleep apnea by noting snoring, and/or repeated pauses in breathing of >10 seconds and/or snorting and/or struggling for breath. Sleep apnea is most common among persons who snore heavily, but can also occur among people who do not snore. .. have an overnight sleep study. ..
3) Even modest improvements in sleep quality can make a meaningful difference in quality of life. ..
4) Trial and Error is one of the best strategies–despite its frustrations.
Methods that help one person often fail for others. View each treatment trial as an opportunity, and each treatment failure as clearing the decks to make way for the next potential option. If you keep trying, and don’t get discouraged, the odds are you’ll find one or more medicines that can make a difference. ..
5) Dumb Simple Common Sense Sleep Hygiene and Psychological Maneuvers can make an important difference (See the Sleep Hygiene table below) Don’t neglect these important issues even though they’re “low tech”. ..
Melatonin
0.5 mg to 6 mg 1 to 5 hours before sleep; more likely to help night owls, or elderly
5-hydroxy- tryptophan
helps sleep onset; do not mix with SRRI anti-depressants or St. John’s Wort or MAO inhibitor antidepressants
Valerian Root
Mediocre one used for single nights, fairly effective at 300-600 mg at night over 2-3 weeks
Hops, Lemon Balm, passion flower, skullcap, calcium, magnesium, inositol
lavender extract as aroma therapy --- relaxes, probably beneficial ....
6) Make staying asleep an interim goal on the way toward sleep that refreshes. Restful restorative sleep is the goal, but, despite sleeping through the night, many patients still wake feeling tired. However, all else being equal, you’re better off waking tired after sleeping through the night than waking tired after not sleeping through the night.
7) .. sleeping pills ... for FMS/CFS bad sleep is chronic and harmful to your health, my judgment is that often for FMS/CFS .. If you benefit, take sleep medicines regularly to support better sleep. .. the tricyclic muscle relaxant Flexeril, the anti-depressants trazadone and Serzone, the newer anti-depressant Remeron, and the newer sleep medicines Ambien and Sonata. ..These medicines should still be first choice–when they work. However, since many people with CFS/FMS are very sensitive to medicine side effects, fairly often these medicines aren’t tolerated, or that they don’t work So, other less standard sleep options are very often worth a try.
8) The benzodiapine group of medicines.
Usual opinion is that we should avoid diazepam/Valium like medicines except for occasional use because they are “habit-forming”, tend to disrupt rather than improve the EEG pattern during sleep, and because for some people over-time they tend to stop working. This is all true. However, my experience and that of other specialists is that a proportion of people with FMS/CFS do surprisingly well with this class of medicines, even with long term use. So, don’t dismiss the benzodiapine group automatically, as many physicians tend to do. Among the benzodiazepines, many FMS/CFS specialists prefer Klonopin/clonazepam.
Usual opinion is that we should not combine different sleeping pills to be taken at the same time. Again, the rule often makes sense, but there are times when it may not, especially for people who tend to get side-effects at standard dose levels of many medicines. Combining several different types of medicines and/or herbs at low doses sometimes adds effectiveness while minimizing drugs side effects.
One combination that’s sometimes useful is a low dose of a tricyclic antidepressant plus the benzodiazepine, Klonopin. Another might be a short acting sedative e.g. Sonata or Halcion along with a longer acting medicine e.g. Ambien or trazadone. Another option: rotate several different medicines, so you won’t get too used to any one.
(Caution: the more different medicines you take in a given day, the more potential there is for drug interactions. Remind your doctor to look up each interaction combination each time you add a new medicine. Or get a PDR and look it up yourself. This can get complicated, though. And, many, possibly most potential interactions have not been studied systematically.
If you take nutrients or herbs, some health food stores and pharmacies have a computer data base on herb/nutrient/drug interactions. Healthnotes is one company that supplies this service. For example Willner Chemist, the sponsor of the Willner Window Radio show I co-host on WOR radio in New York, has a computer with the Healthnotes data base. (See Willner.com)
9) Medicine Dosages.
Many CFS/FMS patients react adversely to medicine doses that most others would tolerate. If a medicine seems “too strong”, consider trying it again at 10% to 25% of the previous dose. For example, the usual dose of a tricyclic anti-depressant for sleep is 10-30 mg at night (versus 75-150 mg when used for depression). However, the best dose for “sensitive” people might be 1 or 2 mg instead. The tricyclic, doxepin, comes as a liquid suspension, with a dropper bottle, so you can titrate down to 1 mg doses. Flexeril, usually used at 10-20 mg, sometimes does better at 1-2 mg.
(You can fold wax paper over the pill, smash it into powder, then estimate the dose e.g. 10% of the powder made by the pill.)
10) Atypical use medicines:
Many medicines that are not normally used to help sleep may, nevertheless, have sleep enhancing effects, at least for some persons e.g. the anti-histamines Benadryl, Unasom Or they may help indirectly such as by suppressing pain e.g. ibuprofen, Relafen, Ultram, Celebrex. Also useful in some are medicines that are normally used for entirely different purposes. For example: Zanaflex or Baclofen–which reduce muscle spasm in multiple sclerosis medicine; Zofran–an anti-nausea medicine; Neurontin or Gabatril–anti-seizure medicines; perhaps also Dextrmethorphan–the “DM” cough medicine.
11) Anti-depressants.
If you are also depressed or anxious or tend toward rapid, shallow chest breathing (hyperventilation syndrome) then any form of anti-depressant is likely to improve sleep after a month or so of steady treatment. This will be true whether or not the medicine helps or hurt sleep during the first days or week. Thus, antidepressants such as Prozac or Wellbutrin, tend to over-stimulate during the first days of treatment. They can worsen anxiety and insomnia, especially if you take them later in the day. However, over several weeks as their anti-depressant effect takes hold these medicine then act to improve sleep and to lessen anxiety.
In contrast, sedating anti-depressants such as Elavil, Trazadone and Remeron may help sleep within days, even at fairly low doses, long before the 4 to 8 weeks it may take to have a direct affect on depression. If you are not depressed, anxious or prone to disordered breathing, then Elavil, etc. are still likely to help sleep, but stimulating antidepressants like Prozac or Wellbutrin are not
likely to help, even after a month.
(Suspect depression if there is loss of enthusiasm; suspect anxiety if you feel nervous or tense; suspect hyperventilation syndrome if you feel dizzy while seated, light headed, brain fog, or if symptoms worsen within seconds after rapid breathing or with exertion.).
12) Side Effect Avoidance.
Most FMS and CFS patients should ask their doctors to use lower doses than usual, when they start treatment. That reduces the severity of side effects and makes it more likely you’ll be able to build toward effective doses. For example, start Prozac at 5 mg in the A.M. instead of the standard initial dose of 5 mg.
Another option with stimulating medicines like Prozac is to temporarily add a benzodiazepines such as Valium, Ativan, Xanax, or Klonopin to be used intermittently as needed until your body becomes accustomed to the new medicine, and the over-stimulation begins to fade. Unless there is a personal or family history of drug abuse, the risk of addiction or psychological dependence is minimal, since you would only be using these tranquilizers for two or three weeks at most, until the body gets used to the anti-depressants.
13) Vitamins and Herbs.
While controlled studies are limited some patients report benefit from various “natural” or “alternative” vitamins or herbs can. These are relatively safe and may be worth a try. But be wary of interactions with drugs e.g. 5 hydroxy tryptophan should not be mixed with Prozac or with St. John’s Wort.
..
“adaptogenic” herbs such as Rhodiola, Cordyceps, Ginseng, and Ashwaganda may improve the general ability to resist physical stress. No formal studies of this approach have yet been reported for CFS or FMS. However, anecdotal reports by clinicians have been encouraging.
Other holistic approaches that may help:
re-train slow, deep diaphragmatic rhythmic breathing
(which are abnormal and cause symptoms in at least 50% of persons with severe CFS/FS);
reverse the increased loss of magnesium that typically occurs with CFS;
supplement anti-inflammatory omega-3 fatty acids/fish oils;
improve digestive function;
improve liver detoxification function;
improve the crucial biochemical pathways of methylation–the folic acid/vitamin B 12, S-adenosyly Methionine pathways;
identify specific food sensitivities such as gluten or sugar;
optimize hormones such as thyroid, adrenal, testosterone, growth hormone, and DHEA.}
Vicious Cycle #2: Disordered Breathing Rhythms
More than half of our patients with FMS or CFS develop a disordered pattern of breathing. They take very small rapid breaths using the small muscles of their chest instead of slow, deep breathing with the large muscles of the abdomen. These changes are subtle and most people who "hyperventilate" in this manner don't realize that their breathing pattern is out-of-synch.
Shallow chest breathing makes people feel tense.
Slow, deep abdominal breathing creates feelings of calmness. Disordered breathing can also cause a broad array of frightening symptoms including mental fog, dizziness, irritability, chest pain, feeling numb and more. Worsening symptoms then disrupt breathing further.
Vicious Cycle #3: Inactivity Leads to Progressive Loss
of Physical Fitness (De-conditioning)
People with FMS and CFS often feel too ill to exercise, and if they push themselves, they get worse. However, not exercising at all is also a mistake. With inactivity, fitness fades. This increases a patient’s vulnerability (i.e., it takes less and less exertion before you’re pushed beyond your limits). This leads to less activity, which, in turn, leads to lower blood pressure and blood volume. Blood sugar becomes unstable. Disruptive stress hormones increase (e.g., adrenalin and cortisone). People feel worse, so they can do even less. And the cycle repeats itself.
Vicious Cycle #4: Magnesium Loss in the Urine
Both physical pain and mental distress cause magnesium loss through the urine.
Low magnesium, in turn, turns up pain volume and also heightens vulnerability to stress. This brings about further magnesium loss.
Vicious Cycle #5: Hormonal Imbalances
Both physical and mental distress trigger the release of hormones such as cortisol that promote tissue breakdown. At the same time, distress depresses the output of hormones that promote growth (e.g., DHEA growth hormone). Thyroid and sex-hormones may also be affected. These hormonal disturbances undermine healing, which then leads to further hormone disruption.
Vicious Cycle #6: Blood Sugar Instability
The five vicious cycles just discussed all have adverse effects on the body's blood sugar and insulin system. Blood sugar tends to rise higher after eating carbohydrates, and then falls rapidly lower, which is the "hypoglycemic" reaction. Actually, low blood sugar per se is not the direct cause of symptoms. Rather, falling blood sugar causes "stress hormones" to surge, including adrenalin and cortisol. These disruptive hormones are actually the cause of most "hypoglycemia" symptoms. These symptoms include: mood instability, depression, light-headedness, foggy brain, fluid retention and fatigue.
Lecture: http://www.drpodell.org/hypoglycemia_symptoms.shtml
[See also Dr. Podell's discussion of "Hypoglycemia Symptoms and Alternative Hypoglycemia Treatments".] ...
[
Diet induced hypoglycemia symptoms
versus hypoglycemia symptoms due to DiabetesPeople with diet-induced hypoglycemia, in contrast are hormonally-primed so that their hypoglycemia-regulating hormones tend to over-react. .. as blood sugar rises after eating, the pancreas tends to overshoot, firing too much of the blood-sugar lowering hormone, insulin. This drives blood sugar down faster and further than it should.
In response, the adrenal glands somewhow "recognize" the need for an emergency hypoglycemia treatment to block blood sugar from crashing. The body reacts with a massive discharge of adrenalin and cortisol. Adrenalin and cortisol do brake and then reverse, the falling blood sugar, but now, the body’s anti-hypoglycemia treatment itself becomes the problem. In excess, these “natural hormone” hypoglycemia treatments can cause a terrible range of symptoms.
Adrenalin/epinephrine, the “fight or flight” hormone, grossly over-stimulates, causing “low blood sugar symptoms” of anxiety, rapid heart rate, foggy thinking and fatigue.
High cortisone, if frequent or prolonged, also mimics low blood sugar symptoms, tending to make us fat, sluggish and depressed. So for dietary hypoglycemia, most often, it’s not low blood sugar per se that causes most of the symptoms. They’re primarily the side effects from too much adrenalin and cortisol. ...
Note: Almost any physical or mental health problem increases vulnerability to hypoglycemia symptoms. Hypoglycemia symptoms, in turn, worsens physical and mental illness. The result: a vicious cycle that helps keep people ill. Hence, the importance of proper hypoglycemia treatments.]
Vicious Cycle #7: Mind/Body Tension
Feeling bad for so long makes people “tighten up,” both literally in their muscles and figuratively in their mind. Muscle tension increases pain and stiffness. Mental tension creates feelings of anxiety, and a sense of not being in control. This causes more physical and mental tension, reinforcing the illness.
Vicious Cycle #8: Losing Perspective, Losing Hope
People who are chronically ill tend to lose optimism and also their sense of perspective and proportion. Small set backs feel like catastrophes. Dips feel like they are taking forever. Anger suppresses immune function. A patient experiencing these lows may lose hope and stop trying. This heavy burden adds to the illness. What tools do we have to reverse these vicious cycles?
- .. behavioral training, nutritional supplements, herbs and medicines.
- Rhythmic breathing.
- To improve physical fitness, the Goldilocks Principle applies
– not too much exercise and not too little, but just the right amount.
Within a few months this usually improves fitness, function and symptoms.
- Magnesium supplementation.
- Hormones supplementation.
- Anti-hypoglycemic diet.
- Relaxation skills.
- Cognitive Behavioral Therapy (CBT)
is a brief educational technique that teaches you how to "reframe" practical problems so that you deal with them more effectively.
Our strategy is to first reverse one vicious cycle, then the next and the next. This removes obstacles that perpetuate illness, thereby strengthening the body’s natural abilities to heal.
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