CCCA News and Information

Volume 16, Issue 1

N E W S L E T T E R

 March 2002
UPCOMING CCCA MEETINGS Other groups in the Sacramento area...
CCCA Calendar of Events
2002
Date and Time Activity
Sat. March 9, 1-3PM Group Meeting 
Wed. April 3, 5:30-7PM Newcomer/Share Meeting 
Sat. May 11, 1 - 3PM Group Meeting 
Wed. June 5, 5:30-7PM Newcomer/Share Meeting 
!!!    July    !!! *** summer vacation ***
Wed. August 7, 5:30-7PM Newcomer/Share Meeting 
Sat. September 14, 1-3PM Group Meeting 
Wed. October 2, 5:30-7PM Newcomer/Share Meeting 
Sat. November 9, 1-3PM Group Meeting 
Wed. December 4, 5:30-7PM Newcomer/Share Meeting 

NEXT SPEAKER MEETING - MARCH 9

This meeting will "show and tell" a conference videotaped by the American Association for Chronic Fatigue Syndrome and Chronic Fatigue syndrome Association of Minnesota in 2001. The conference title is "The Well-Informed CFS Patient - Opening Doors to Better Care."

A number of very distinguished presenters contributed, including: Benjamin Natelson, MD, Charles Lapp, MD, Leonard Jason, Ph.D., Donald Uslan, MA, and others.

Dr. Natelson covers an article printed in the Journal of the American Medical Association (JAMA) titled "Chronic Fatigue Syndrome" (May 23/30, 2001, Vol 285 No. 20.

Leonard Jason, of DePaul University, presents an extensive profile of the various aspects of CFS/FM/MCS, and the phases of the illness.

This conference covers three videos, so we'll view them as the group is interested.

AUTOIMMUNITY IN A NEW VEIN? NEWLY DISCOVERED BACTERIUM MAY TRIGGER CFIDS Pamela Weintraub, news.bmn.com. 11/9/2001, Issue 114

Abstract When renowned pathologist Luther E. Lindner found "strange organisms" in human blood and tissue, he was intrigued. Now Lindner along with a Texas-based company called Pathobiotek say a newly discovered, blood-based bacterium may be the long-sought trigger for multiple sclerosis, chronic fatigue syndrome, and other forms of autoimmune disease.

One of the most confounding diseases of modern times, multiple sclerosis (MS) is caused by destruction of the fatty myelin sheath that normally insulates neurons and enables signals to pass from one nerve cell to the next. Symptoms, when nerve signals are subsequently slowed or halted, range from mild numbness in the limbs to dramatic cognitive decline, paralysis, and loss of sight.

Most experts believe that the destructive process is autoimmune in nature, spurred when the body's immune cells attack the cells of the central nervous system. Scientists have, in recent years, identified the rogue immune cells involved in the destruction, even pinpointing the receptor sites that cause these cells to latch onto myelin, prompting the mayhem to begin. But while researchers have mapped the process, they don't know what sets it off. Prime suspects have been viruses, already implicated in demyelination of nerves. Yet investigation of more than a dozen viruses, including measles, canine distemper, and herpes (HHV-6) have failed to show cause and effect.

    Now a Texas-based company called Pathobiotek Diagnostics says a newly discovered, blood-based bacterium may be a trigger for MS, chronic fatigue syndrome (CFS), and other forms of autoimmune disease. It all started a few years back when respected pathologist Luther E. Lindner joined colleagues and investors to pursue "the strange organisms" he'd found in human blood and tissue over the years. As part of that effort, a researcher working under Lindner used a novel culture system to see if he could identify the spirochete Borrelia burgdorferi in a patient thought to have Lyme disease, often so similar to MS and CFS that the conditions may seem indistinguishable. "Lo and behold," says Lindner, "we saw a few bacteria wiggling around, but they were not spirochetes and, so, clearly not B. burgdorferi or Lyme."

Lindner was, to put it mildly, intrigued. 'The general dogma in medicine up until very recently," he explains, "is that the bloodstream in normal people is sterile. It was not supposed to have bacteria floating around in it, but there they were."

Pursuing the discovery, Lindner studied a group of 66 patients with CFS, MS. and other forms of autoimmune disease, including rheumatoid arthritis and lupus. Focusing on MS patients alone, he made a notable observation: Those with symptoms had the odd bacteria present in high numbers, while those in remission generally did not. To determine whether the bacteria and the symptoms were truly related, he began treating symptomatic patients empirically with antibiotics, changing medications when symptoms remained. If patients were treated long enough, from two to six months and in some cases more, he says, "about 50 percent improved. We observed that symptomatic treatment correlated with levels of bacteria in the blood."

Despite his ability to improve the outcome for many patients, however, there were roadblocks to overcome. For one thing, a percentage of patients responded to antibiotic treatment by getting drastically sicker than they'd been before. It turns out, says Lindner, that antibiotics in this subgroup of patients stimulated bacterial growth, an effect he has traced to a specific pump in the bacterial cell walls. Thus, even though treatment was helpful for many patients, it was still a game of Russian roulette. "The results are not predictable. Without tests to identify antibiotic sensitivity levels in each patient," he says, "we cannot not recommend this treatment at all."

In addition, the culturing system Lindner used to guide his research was crude. "It relied basically on microscopic observation and microscopic counting," he says. "You can't be a hundred percent sure of what you're looking at under the microscope." In order to be sure of his findings, he had to look at the organism at the genetic level, sequencing its DNA. To take Lindner's work to the next level, Pathobiotek has been focusing on a technology platform aimed at characterizing and quantifying the newly found organism through state-of-the-art molecular and microbiological tools. One result has been identification of the organism's DNA by polymerase chain reaction (PCR), proving it is truly unique. Reflecting this finding, Pathobiotek has registered "Human Blood Bacterium," or HBB, as United States Patent 6,255,467, issued in July 2001.

The company has also been hard at work on improving culturing techniques using DNA analysis for confirmation of organism identity. "It has been a long, slow process,' says Lindner, "but the new culturing system is several orders of magnitude better than the original." One result of culture advancements has been the finding that the organism is present, in low number, in all or nearly all people. "We can grow them from everyone," he states. The Lindner team has also learned that the organisms consist of three or four closely related species of Methylobacteria, a class usually found living in the environment. "So far we haven't found a particular species or strain to correlate with whether or not the patient has symptoms," Lindner adds, "though we continue to look. And although we have been looking fairly hard, we have yet to find any mechanism that would explain why certain patients have symptoms while others do not. We are now working on quantitative PCR to see whether we can confirm our original, crude associations in a more precise way.

The company also hopes to help physicians and other researchers consider this new organism when diagnosing, treating, or studying the spectrum of autoimmune disease that includes CFS and MS. Toward that end, it intends to market several kits enabling researchers to confirm the presence of the microorganism from either serum or culture samples. New techniques involving quantitative PCR, as well as monoclonal and polyclonal antibodies currently under development will soon allow labs to assay the varying levels of the microorganism in humans.

The company is also trying to understand the mechanism of the cell-wall pump that can respond to antibiotics by making some patients especially ill. "We don't know what the pumps are moving in and out of the bacteria," says Lindner, "but we've found that some solvents influence their behavior, flipping them back and forth." What's more, he notes, "certain patterns of diet may do the same." The group has learned, for instance, that niacin tends to turn up the pumps, stimulating growth of the bacteria. Other nutrients may do the reverse.

Finally, Pathobiotek is working hard to identify antibiotic sensitivity levels in autoimmune patients, a prerequisite for delivering therapeutic treatment at all. Already, the team has discovered that one antibiotic, clarithromycin, is likely to stimulate bacterial growth in most patients. The goal is providing a sensitivity test that would help customize treatment for each and every patient while significantly lowering the risk. One of the most important aspects of Lindner's work could be the finding of bacterial persistence following antibiotic therapy. Many experts contend that autoimmune disease, while perhaps triggered by infection, continues its assault long after the microbes have been killed. But Lindner's findings suggest that autoimmune illness may be driven by persistent infection - when infection subsides, his research indicates, autoimmune symptoms do, too. "I don't know of any way to get rid of this organism," Lindner says. "The best we can do is reduce its levels. We don't know why. We have no proof at this point that they are intracellular and, thus, hidden from antibiotics, but their persistence in the body suggests that may be the case." Another theory, he notes, is that human blood bacteria cross the placenta. if the organisms are present prior to birth, they may not be recognized as foreign by the immune system and, thus, may be especially difficult to clear.

When all is said and done, Lindner concedes, human blood bacteria may not be the long-sought trigger for MS, CFS, and other forms of autoimmune disease. "There is always the possibility that the changes in the bacterial level are a secondary effect," he states. "If so, it would still be a significant marker of disease activity. On the other hand, if these organisms are truly causative, sooner or later we will find a means to control them."

Due to corporate restructuring, Pathobiotek will soon be changing its name to Adesy, Inc., and will be moving corporate offices to a different Texas location.

Pamela Weintraub is a former staff writer at Discover, former editor-in-chief of Omni Internet, and the author of 15 books on health and science. Multiple Sclerosis and Chronic Fatigue Syndrome: A Bacterial Etiology? - an article written by Luther E. Lindner in response to requests for information about his research. Viruses and Autoimmune Disease: Two Sides of the Same Coin? - examines experimental models on the role of viruses. From Trends in Microbiology, 2001, 9:8:377-381. The Role of Different Subsets of T Regulatory Cells in Controlling Autoimmunity - focus on the role of T regulatory cells in prevention of autoimmunity and maintenance of homeostasis. From Current Opinion in Immunology, 2000, 12:6:676-883. Antigen-Specific Therapy for Autoimmune Disease - discusses the paradoxical use of self-antigens as tools for autoimmune disease therapy. From Current Opinion in Immunology, 2000, 12:8:704-711. Animal Models of Autoimmunity and Their Relevance to Human Diseases - reviews recent advances. From Current Opinion in Immunology, 2000, 12:6:684-690. Understanding Autoimmune Disease - an online booklet from the National Institute of Allergy and Infectious Diseases, National Institutes of Health. www.niaid.gov

PRE-CFS PATIENTS VISIT DOCTORS OFTEN People who develop CFS consult their physicians more frequently than other patients in the years prior to their illness, according to new British research.

The study looked at records from 14 general medical practices in Devon, England. Researchers tracked the histories of 49 CFS patients and 49 matched controls. The researchers found that CFS patients visited their doctors nearly twice as often as the controls during the 15-year period prior to diagnosis.

CFS patients were 8.5 times more likely to visit a doctor with complaints of upper respiratory tract infections than were controls. They also were seven times more likely to mention lethargy and 3.8 times more likely to complain of vertigo.

The authors offer several explanations for the increased office visits - including the possibility that the patients already had CFS and were undiagnosed.

Hamilton WT et al. Frequency of attendance in general practice and symptoms before development of chronic fatigue syndrome: a case-control study. Brit J of Gen Prac. 2001; 51:553-558.

NEW METHOD FINDS IMMUNE DIFFERENCES

In the past, linear methods have proven unreliable for detecting immunological abnormalities in CFS patients versus control groups. In a recent paper, scientists describe using neural network classifiers to detect immune differences that were previously unidentified.

Neural networks are a type of nonlinear classification system that has been shown to provide optimal identification of factors in situations where the data is multilayered and multiple comparisons are being made.

Researchers looked at immunological data for 103 CFS patients and 87 healthy but sedentary controls. Multilayer neural networks showed an over 16% improvement in identifying immune differences than traditional linear methods. A sensitivity analysis of the network found differences between groups that are consistent with the hypothesis that CFS symptoms are a consequence of immune system dysregulation.

Hanson SJ et al. Detection of immunologically significant factors for chronic fatigue syndrome using neural-network classifiers. Gun Diagnostic Lab Immunol. 2001; 658-662.

CHARACTERISTICS OF LONG-DURATION CFS
By Fred Friedberg, PhD, State University of New York

Patients ill with chronic fatigue syndrome (CFS) for more than 10 years have only recently been studied. It is important to characterize this long-duration group because they may have distinct features that shed new light on the pathophysiology or genesis of the illness.

This article is based on a multifaceted study of long-term CFS patients that I conducted with Lucy Dechene, PhD, Maggie McKenzie, MA and Robert Fontanetta, BA.(1,2) We compared patient groups with long-duration (median 18 years; n=298) and short-duration (median 3 years; n=28) CFS to a group of healthy significant others (mostly husbands and wives of the patients) (n=179) on symptomatic, neurocognitive and psychological variables.

Illness patterns and severity

An analysis of illness progression in long-duration study participants revealed no typical pattern. Of the approximately two-thirds of patients with a relapsing/remitting disease pattern, some were improving, some were worsening and the rest reported a roughly constant illness over time. The prevalence of specific CFS symptoms (see Table 1) in the long-duration group was similar to that found in other research samples.

However, compared with the short-duration CFS group, the long duration group had significantly higher symptom severity scores, largely attributable to increased cognitive difficulties (see Table 2).

TABLE ONE MOST FREQUENTLY REPORTED SYMPTOMS IN LONG-DURATION GFS (reported often or almost always)
Prolonged fatigue alter exercise 87.0%
Severe, persistent fatigue 86.0%
Muscle aches and pains 81.1%
Forgetfulness 73.9%
Distracted by noise 69.4%
Difficulty concentrating 67.5%
Sensitive to light 64.0%
Gait less fluid 60.2%
Pain in extremities 56.0%
Loss of sexual desire 54.1%
Insomnia 53.3%

TABLE TWO
SYMPTOM FREQUENCY BETWEEN GROUPS
(significant differences only) 

Long-Duration (%) Short-Duration (%)
Word block 92.8 78.6
Using wrong word 76.7 43.1
Trouble with directions 71.0 44.0
Burning sensations 33.6 14.3

In addition to greater cognitive difficulties, long-duration patients also reported significantly higher frequencies of fibromyalgia (FM) and depression compared to the short-duration patients, which may further increase their impairment (see Table 3). Most of the long-duration patients (83.3%) were not working due to their illness, but a slight majority of those with a short duration of illness (51.5%) were. Most long-duration patients experienced onset at a younger age than the short-duration group (28.1 years vs. 42.2 years) and reported a higher percentage of infection with viral illnesses, including infectious mononucleosis (48.9% vs. 39.3%) and human herpesvirus I and II (39.3% vs. 32.1%).

Worsening vs. improving subgroups

We found two well-defined subgroups within the long-duration patient population - those patients who were worsening (n=128) and those who were improving (n=70). These groups were well differentiated on measures of symptom severity, stress, depression and functional status.

TABLE THREE
CO-MORBID CONDITIONS IN ALL GROUPS
[Duration]		Long CFS Short CFS  Signif. Other
Co-morbid Condition	(n=250)	(n=28)	(n=179)
Allergies		 88.8	85.7	56.8
Chicken pox/shingles	 81.9	75.0	64.6
Fibromyalgia		 72.3	50.0	2.9
Irritable bowel syndrome 71.2	70.4	15.3
Chronic sinus Infections 60.7	57.1	25.3
Major depression	 58.9	37.0	17.2
Panic attacks		 56.7	53.5	14.6
Infectious mononucleosis 48.9	39.3	8.6
Anemia			 47.1	35.1	9.7
Cardiac arrhythmia	 42.7	17.9	9.0
Chronic bladder infection40.9	25.0	9.0
Chronic bronchitis	 40.5	39.3	17.4
Herpes I/II		 39.3	32.1	7.9
Thyroid problems	 32.5	28.6	7.9
Phobias			 28.1	35.7	4.6
Asthma			 26.5	32.1	8.6
Raynaud's disease	 16.4	7.1	2.3
Hepatitis		 13.6	17.7	6.4
Suicide attempt		 12.0	7.2	3.9
Epilepsy		 12.0	0	1.1
Sjorgren's disease	  7.1	0	0.6
Lyme disease		  3.2	14.8	0

The worsening subgroup was more likely to report the co-morbid conditions of FM (79.8% vs. 62.7%), chronic sinus infections (64.6% vs. 34.2%), thyroid problems (41.4% vs. 27.5%) and asthma (32.8% vs. 17.4%), as well as previous suicide attempts (17.3% vs. 7.3%). This group also showed significantly elevated levels of stress compared to the improving group. One surprising finding was that the improving group reported significantly greater symptom severity during the first year of their illness compared to the worsening group. A similar pattern following illness onset was found in the short-term group.

Clinical considerations

Individuals in both the short and long-duration groups rated 29 treatments, but no single treatment emerged as effective for the majority of patients. The highest-rated treatments for both groups combined included anti-allergy diets (32%), anti-depressant medications (28%), anti-yeast diets (27%), stress reduction/ biofeedback (26%), intravenous vitamins (26%) and physical therapy/massage (26%).

Of these treatments, two were reported to have negative side effects for greater than 10 percent of the respondents - antidepressant medications (31%) and physical therapy/ massage (16%). The side effects from physical therapy were most likely pain and relapse following physical exertion. Clinicians can reduce the risk of these side effects by recommending a slow, gradual program that allows adequate time for recovery between sessions.

Our study suggests that long-duration patients report greater cognitive difficulties than short-term patients and are more likely to be unable to work. Clinicians should therefore develop long-term strategies to improve daily functioning in this group of patients. remain ill and eventually become long-duration patients themselves.)

References 1. Friedberg F et al. Symptom patterns in long-duration chronic fatigue syndrome. J Psychosom Res. 2000; 48: 59-68. 2. McKenzie M et al. Cognitive behavioral coping skills in long term chronic fatigue syndrome. JCFS. 1995; 1:59-67. 3. Komaroff A et al. An examination of the working case definition of CFS. Am JMed. 1996; 100: 56-64.

Dr. Fred Friedberg is clinical assistant professor of psychiatry at the State University of New York at Stony Brook. He has authored three books and many articles on CFS and fibromyalgia. Given the finding of high levels of stress in long-duration patients, stress reduction/relaxation techniques may also be beneficial. (Editor's Note. The short-term patients were not deemed recovered from CFS at the time the study was conducted; it is likely that many of them will.)

TREATING INFECTIONS WITHOUT ANTIBIOTICS - NEW HELP FOR STAYING HEALTHY DURING THE WINTER COLD AND FLU SEASON!
Jacob Teitetbaum, M.D. , www.endfatigue.com

Thymic HormoneL A Natural And Powerful Immune Enhancer
As winter approaches, we have a wonderful new tool called Thymulin that is available for fighting infections. Thymulin is a major hormone, made by the thymus gland, that regulates our immune system. As we get older, and more so in the face of severe stress, our Thymus gland shrinks. Although normal to some degree, a significant decrease in Thymulin levels (as is seen in AIDS patients) can wreak havoc on your immune system. In the past, all we had available were Thymus Glandulars. Basically, it was ground up tissue from animal Thymus glands. Its ability to restore Thymus activity was not optimal (for a number of reasons). Recently, a technique was discovered (and patented) for producing the pure, natural Thymus hormone (Pro Boost) from cell cultures. Studies previously suggested that this hormone could help augment the immune system in viral infections (e.g., Hepatitis C, AIDS) and some cancers. A recent study in CFIDS patients with markedly elevated Epstein Barr antibody levels showed a dramatic drop in the antibody levels after six weeks of treatment. Many physicians are finding that in CFIDS patients with persistent viral, yeast, bowel or other infections, using Thymic hormone (Bio Pro A) has been very helpful. I've found that using It even for 2 to 3 days at the onset of an infection can drastically shorten the length of the infection and often stops it on the first day.

How Do I Use Pro Boost? (Thymic Hormone) Pro Boost (used to be called Bio Pro A) comes in packets (4mcg in each packet). The powder in the packet must be poured under the tongue and be allowed to dissolve and be absorbed sublingually (i.e., under the tongue). Any powder that is swallowed is destroyed in the stomach. Bio Pro A is too effective and expensive (at $2.00 per packet) to allow it to be wasted by swallowing it. For acute infections (e.g., colds, flu, bladder infections), use 1 packet 3 times a day for 1 to 5 days, or until the infection is nearly resolved. You may choose to use I packet a day for a few more days if there are some lingering symptoms. Use it with the other treatments discussed in this article. Bio Pro A can also be used to prevent infection, (e.g., if one member of the family is sick, the rest of the family can also take it as a preventative), as well as giving the person who is sick the chance of a speedier recovery. Interestingly, studies are in progress using it in pets (¾ packet on the tongue 4 times a day) for severe infections (e.g., Feline Peritonitis). For CFIDS patients with chronic, persistent, flu-like symptoms (e.g., symptoms for years) or other infections, it is reasonable to use 1 packet 3 times a day for 6 to 12 weeks, and then 1 packet a day for 3 months (and then as needed). There are usually no side effects. It seems to actually help some patients with autoimmune illnesses (e.g., Lupus), suggesting that, like many natural products, it acts as an adaptogen (i.e., it brings the system to normal).

Where Can I Get Pro Boost? [TCN Editor notes: The best price remains Discovery Nutritional Products, P.O. Box 1512, Bonsall, CA 92003, 1-888-350-8233 (toll-free order-line), Fax: 1-760-731-1226, or online at www.aboutdnp.com/proboost.htm
See my previous article on this product at www.sonic.net/cnds/biopro.html]

What Else Is New For Treating Infections? Although probably not as effective as Thymic hormone, Olive Leaf Extract seems to be helpful against viral respiratory infections and perhaps yeast infections. It seems most helpful in fighting the common cold. In my experience, it has been very helpful (cold gone in 24 to 36 hours) in about half the people who try it. The dose is 1000mg (two 500mg capsules) 3 times a day for 3 to 7 days. If it causes nausea, cut the dose in half. As people have learned about Olive Leaf from friends, it has become widely available in health food stores. If you have trouble finding it, Olive Leaf Extract (and Echinacea) can also be ordered through my office.

What Else Can I Do To Prevent The Flu?

1. For most of my patients who repeatedly get respiratory infections that take forever to go away, I consider an empiric trial of Cortef 7½ mg in the morning and 5 mg at noon for 2 to 3 months.

2. The flu vaccine is a double-edged sword. In some CFIDS patients it can cause mild flu-like symptoms for a few days, and rarely, a severe flare of the CFIDS. Unless you are one of the 10% of CFIDS patients who feel worse after the flu shot or other vaccinations, I would get the flu shot (I've already had mine) and get it soon. Overall, for most people, the benefit can significantly outweigh the risk. Interestingly, a recent Scandinavian study showed that giving frequent vaccinations (against Staph bacteria) significantly improved symptoms in Fibromyalgia patients. It was felt that it helped by stimulating the immune system.

3. Taking at least 500mg of vitamin C a day is also a very good idea.

4. Dress warmly. A cold breeze blowing across your muscles (or neck) can flare your Fibromyalgia.

What Should I Do If I Get A Respiratory infection?

These treatments will help a respiratory infection a lot:

1. Pro Boost (natural Thymic hormone) is a very effective immune stimulant. Dissolve the contents of 1 packet under tongue 3 times a day and let it absorb there (any that is swallowed is destroyed).

2. Take Olive Leaf 500mg 1 to 2 capsules 3 times a day.

3. Take Echinacea 1000mg a day. It's an immune stimulant that can enhance your body's defenses. Use a standardized form.

4. Take Vitamin C 1000mg to 8000mg a day (enough to get diarrhea, then cut back to comfortable level).

5. Suck on a Zinc Lozenge 5 to 8 times a day. Make sure that the lozenges have at least 10mg to 20mg of Zinc per lozenge. Less than this will not be effective. Zinc lozenges have been known to speed up recovery from a cold by about 40%. General Nutrition Center sells a very good one.

6. Drink plenty of water and hot caffeine-free tea (or hot water with lemon) and rest!

7. Take Oscillococcinum. if you have flu-like symptoms such as chills, fever, achiness and/or malaise, try taking this homeopathic remedy. Oscillococcinum speeds healing and improves comfort. It's best if taken early in the infection and is available at most health food stores (and some supermarkets). I don't mail it because you need to start it the same day that your infection begins.

8. If you have a sinus infection, try Nasal Rinses. Dissolve ½ teaspoon of salt in a cup of lukewarm water. inhale some of the solution about one inch up into your nose, one nostril at a time. Do this either by using a baby nose bulb or an eyedropper while lying down or by sniffing the solution out of the palm of your hand while standing by a sink. Then, gently blow your nose, being careful not to hurt your ears. Repeat the same process with the other nostril. Continue to repeat with each nostril until the nose is clear. Rinse your nasal passages at least twice a day until the infection improves. Each rinsing will wash away about 90% of the infection and make it much easier for your body to heal.

9. Take Tylenol® for muscle aches and use Cepacol® or Chloraseptic® mouthwash for sore throats. Saltwater (mixed as described above for the nasal rinse) also helps sore throats. If you use Tylenol frequently, use the NAC supplement 500mg a day so you don't deplete your Glutathione levels.

10. Consider an Antibiotic, if nasal and lung mucus stays yellow for more than 7 to 14 days, or if you're getting worse after 3 to 4 days. Take Nystatin, 2 tablets 2 to 3 times a day, while on the antibiotic. Erythromycins (e.g., Zithromax or Biaxin) are usually preferable to Penicillin. Interestingly, patients sometimes find that all their CFIDS symptoms (not just the cold) may improve on Erythromycin or Tetracycline (e.g., Doxycycline). If that happens, I would take a 6 week course of the Biaxin 500mg 2 times a day or Doxycycline 100mg 2 times a day. If you feel better on the antibiotic (take Bio Pro A. Ecchinacea and Nystatin in conjunction with it), keep repeating 6 week courses of the antibiotic, Bio Pro A and Nystatin until the symptoms stay gone. Be sure to be on Nystatin and perhaps also take .Sporanox 200mg 2 times a day once a week (e.g., each Sunday) while on the antibiotic to prevent yeast overgrowth. I would also check for Lyme's Disease using a blood or urine test. I recommend using BBI Labs at 800-866-6254. They can arrange to have your home-based lab draw the blood and mail it to them. They use "PCR" testing which avoids the common false positive Lyme tests seen with other technologies.

11. Try using a Humidifier or Vaporizer (not one that leaves you wet) in your bedroom. You can also make a steam room by running a hot shower in your bathroom and then breathing in the steam. Or, try a steam inhaler that is additionally wonderful for chronic and acute sinusitis (available from Bernhard Industries at 305-861-2536 for $39.95).

You no longer have to feel powerless in the face of winter infections! Patients often find that after using the From Fatigued to Fantastic! treatment protocol, they can go back to enjoying winter sports. One of my patients that I treated at the end of last winter felt so well that she's now a ski instructor!

From The Carousel Network, Jan/Feb 2002, Vol VIII, No. 1

RESEARCHERS BRAVE THE NOT-SO-FRIENDLY SKIES by Tamara Liller, from Fibromyalgia Frontiers 2001 (Volume 9, Number 4)

The International Myopain Society hosted MYOPAIN '01 during early September in Portland, Oregon, and the American College of Rheumatology (ACR) presented its 64th Annual Scientific Meeting in San Francisco, California, in early November.

Presented below are several of the research abstracts of immediate practical interest to fibromyalgia (FM) patients which were offered by the ACR and MYOPAIN conferences.

General Topics

Sleep disturbance is not correlated with cognitive dysfunction: Researchers from Ann Arbor, Michigan, and Cardiff in the UK studied 23 FM patients and 19 age/education matched controls to determine their level of sleep efficiency (% time asleep during a defined sleep period) and the degree to which it affected their cognitive functioning and other FM symptoms. They found that compared to controls, FM patients had lower sleep efficiency and shorter sleep episodes and higher night activity. While there was a significant negative relation- ship between time spent sleeping and pain (i.e., the less sleeping time, the greater likelihood of increased pain), there was no correlation between time spent sleeping and cognitive functioning, fatigue, depression, or anxiety. The investigators concluded that while individuals with fibromyalgia sleep less efficiently than healthy controls, their cognitive problems and fatigue cannot be explained by a simple sleep abnormality. (ACR Abstract # 109, J.M. Glass, D.C. Park, A. Korszun, and L.J. Crofford)

The prevalence and characteristics of fibromyalgia in rheumatoid arthritis (RA): Investigators from Ankara, Turkey, and Peoria, Illinois, wanted to know if 14% of rheumatoid arthritis (RA) patients really have fibromyalgia as was reported in 1984--before the advent of the ACR diagnostic criteria for FM. They also wanted to compare those with RA+FM to those with RA only, and so they evaluated 191 consecutive patients with RA who visited a rheumatology clinic using a variety of tests. The investigators found that 30 (15.7%) of their study volunteers had both fibromyalgia and RA, a figure similar to the 1984 statistic. In addition, their test results also suggested that while those with RA+FM did not differ from patients with RA alone in terms of age and education, they did have significantly more fatigue, tension headaches, anxiety, depression, self- reported total pain sites, and longer duration of symptoms than those with RA only. Further more, although patients with RA+FM did not have a significantly greater total number of swollen joint sites, they did have significantly more tender joints than those with RA alone, and the number of such joints was significantly associated with pain, fatigue, morning fatigue, and number of tender points. (ACR Abstract # 113, S. Arslan, M.B. Yunus, and J.C. Aldaq)

Chronic Pain Does Not Seem To Limit The Activity of FM Patients: Because the musculo-skeletal pain experienced by fibromyalgia patients has often been assumed to be a result of low activity levels and frequent rest breaks, a group of Gainesville, Florida, researchers decided to see if FM patients differed from age/sex matched controls in their levels of daily activity. Using a motion-detecting device known as a wrist actigraph, the researchers re corded the activity levels of a small group of FM patients and controls for seven days. They also tracked pain intensity and pain unpleasantness. What they found was that while FM patients had persistently high pain ratings during the study, their level of physical activity was actually similar to normal controls. (ACR Abstract #103, R. Staud, D.D. Price, C.J. Vierck, A.P. Mauderli, and R.C. Cannon)

Correlation between body mass index and fibromyalgia features: Researchers from Ankara, Turkey, and Peoria, Illinois, decided to see if the same relationship between pain and obesity found in other medical conditions would also hold true for fibromyalgia. They collected data from 211 middle-aged, female fibromyalgia patients (97% Caucasian) in a rheumatology clinic. Using a measurement known as "body mass index (BMI)", they found no correlation between BMI and anxiety, stress, depression, duration of symptoms, global severity, or "hurt all over". However, those with a higher BMI were more likely to have a higher number of tender points as well as a higher level of fatigue. (MYOPAIN Abstract, S. Arslan, M.B. Yunus, and J.C. Aldag)

HPA function in veterans with Gulf War illnesses compared to individuals with FM and controls: A research group from Washing ton, DC, and Bethesda, Maryland, exposed their study subjects (25 persons with Gulf War ill nesses, 31 with FM, and 33 sedentary controls) to several standardized stressors: tilt table testing, cognitive testing, and pain testing. Measurements of cortisol, ACTH, and 24-hour urinary free cortisol were made at precise times, and each study volunteer was assessed in terms of demographics, severity of symptoms, and psychological health. Based on their findings, the researchers concluded that in terms of hypothalamic/pituitary/adrenal (HPA) function, subjects of Gulf War illnesses in their study were similar to those with FM, with serum cortisol being the best discriminant between groups. They also suggested that their data supported the hypothesis that Gulf War illnesses are similar to FM and other chronic multi-system illnesses in terms of their physiologic mechanisms. (ACR Abstract #107, D. Clauw, K. Groner, G. Whalen, K. Ambrose, D. Williams, R. Gracely, S. Epstein, A. Lyden, and G. Chrousos)

The usefulness of acupuncture in the treatment of fibromyalgia: Brazilian researchers selected a sample of 60 FM patients who had been diagnosed using the 1990 ACR diagnostic criteria and then divided them into three groups: (1) those who would receive one acupuncture session a week for 16 weeks; (2) those who would receive one sham (fake) acupuncture session a week for 16 weeks; and (3) those who would receive only 25 mg. of amitriptyline (Elavil) each night at bedtime for 16 weeks. (Note: Each member of the first two groups also received night-time amitriptyline.) Patients were evaluated in terms of pain and depression before the start of the study and at weeks 4, 8, 12, and 16 by an investigator blinded as to treatment groups. The researchers found that the study participants receiving acupuncture were the only ones to show significant improvement on measurements of pain and depression between week 4 and 16 of their protocol. Those in the other two groups did not improve significantly over time, and when compared to the acupuncture group, fared significantly worse in terms of their levels of pain and depression. (ACR Abstract #91, D. Feldman, and E.D. Mariano da Costa).

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