My Daughter May Have CFS, Too!!

Discussion in 'Fibromyalgia Main Forum' started by Hippo, Jan 29, 2003.

  1. Hippo

    Hippo New Member

    My 13-year-old daughter may have CFS. I have had it for 20 years. What does anyone know about this being hereditary? Before I got pregnant, I was told that it wasn't hereditary. Now I feel so guilty. Thanks.

  2. PatPalmer

    PatPalmer New Member

    I was reading an article yesterday which mentioned family members also having CFS.

    The chronic fatigue is basically a bacteria that has taken over, which is suppressing the immune system. Family members may inherit a tendancy to have CFS, but it is the bacteria (mycoplasma) she may have picked up, which has now resulted in CFS. She may well have had this anyway at some time in her life if under pressure.

    Stress is a major factor in developing CFS, I think we all lead stressful lives these days and could be why so many people have this awful condition.
    so please don`t think for a minute it`s your fault, it`s not.

    My daughter has had CFS nearly 4 yrs 'a very stressful girl by nature' and I recently discovered Olive Leaf Extract. It has improved her condition enormously.

    I have pasted an article from the library on Olive Leaf Extract and a link for you to read up on Mycoplasmas (the bacteria).

    I think you will find them very interesting.....

    Hope you both start to improve soon.

    Love Pat

    Olive Leaf Extract Energizes CFIDS Patients
    by James R. Privitera, M.D.


    Since ancient times, the olive tree has been harvested for its wood, food and oil. Today, physicians and patients are utilizing the olive tree for the healing properties of Olive Leaf Extract. When consumed via capsules, tablets or liquids, "Olive Leaf Extract prevents virus infections of nearly all types," says James R. Privitera, M.D., of Covina, CA. "In my practice, I find that this scientifically validated anti-viral substance often helps chronic fatigue patients boost their energy."

    In addition to killing viruses, says Dr. Privitera, "Olive Leaf Extract is broadly anti-microbial, anti-fungal, anti-parasitic and anti-bacterial. People with chronic fatigue syndrome have impaired immunity, which leads to assorted infections with viruses, parasites, fungi, and bacteria," he continues. "Olive Leaf Extract is one of the safest and most effective supplements I've found that improves chronic fatigue syndrome patients' immunity."

    The active ingredient in Olive Leaf Extract is oleuropein; this is part of a compound in the olive tree which makes it strongly resistant to insects and bacteria. Oleuropein is derived from the bitter part of olives, which is eliminated from them when they are cured. Oleuropein is an iridoid, or a type of plant chemical, found throughout the olive tree and in olive oil.

    Healing properties of olive leaves were first discussed in medical literature in an 1854 medical journal article by Daniel Hanbury, M.D., a British physician. Hanbury boiled the leaves and used the liquid to treat people stricken with fever and malaria contracted in Britain's tropical colonies. Dr. Hanbury correctly speculated that a bitter substance in the leaves acted as the healing ingredient: years later, scientists isolated this and named it oleuropein.

    In the 1960s, European researchers found that the active ingredient in oleuropein, elenolic acid, exerts powerful anti- bacterial effects. Toward the end of the decade, research found that elenolic acid also stops the growth of viruses, including those associated with the common cold. Preliminary research suggests that Olive Leaf Extract also inhibits the growth of pathogenic bacteria, viruses, worms, protozoa, and microfungi. "Athlete's foot fungus is often quickly remedied by liquid Olive Leaf Extract," says Dr. Privitera.

    According to Dr. Privitera, "The key thing for consumers to remember when choosing Olive Leaf Extracts, is to buy ones which contain at least 5% oleuropein. 5% is the national standard," he says, "and some manufacturers don't list their percentages, which means that consumers don't always know what they're getting." Privitera recommends that CFIDS patients start off taking small amounts of Olive Leaf Extract, since the remedy causes viral die-off that may result in an exhausted feeling. Patients are advised that they are most likely to feel the benefits of the extract within a month.

    "CFIDS patients should start with one 500 mg. tablet of Olive Leaf Extract a day in the morning," says Dr. Privitera. "If the person feels alright after three days, they should go up to two. They should keep increasing it to 4 or 5 a day. If a great result occurs," he says, "then they should cut down to where they can take the least amount of it and stay on a maintenance dosage."

    Along with its uses for CFIDS and fibromyalgia patients, Dr. Privitera is especially impressed with how Olive Leaf Extract can clear up yeast and herpes infections in patients who take birth control pills. "Although birth control pills promote these infections," he says, "I've seen Olive Leaf Extract clear these up in a matter of weeks."

    "I think people with CFIDS and fibromyalgia should definitely give Olive Leaf Extract a try," says Candy Lynch, 48, of San Dimas, CA. "It has helped remedy some of my immune deficiency, and it may help theirs, too." Lynch, who was diagnosed with CFIDS and FMS in 1990, is a patient of Dr. Privitera's who started taking Olive Leaf Extract in July, 1995. The mother of six children, Lynch has traveled through more valleys of exhaustion than she cares to recall. After three weeks on Olive Leaf Extract, however, Lynch reports, "I developed considerably more energy and stamina. My aches were noticeably reduced and my sleep quality improved because I stopped waking up so often in the middle of the night." Lynch started out taking four tablets a day and now usually takes six a day.

    "If I feel extra-achy, I'll take two extra tablets and make it an eight tablet day," she says. "I think the Olive Leaf Extract also improves my cognitive function. It seems to clear up the brain fog."

    Another patient of Dr. Privitera's who endorses Olive Leaf Extract is Mary Ruiz, 58, of Whittier, CA. Although she admits to having been "flattened" by Epstein-Barr virus that was diagnosed in 1991, "Olive Leaf Extract has helped me through some rough periods," she says. "It has helped me regain some of my energy and build up my strength reserves. Although I take other supplements, I feel better after adding the Olive Leaf Extract to my nutritional regimen." Ruiz says she initially took about three to six capsules a day and felt an energy boost within a month. "Now I take two capsules a day, or three on a busy day."

    The active ingredient in Pro Health's Olive Leaf Extract, oleuropein has been found to eliminate viruses by interfering with the body's production of certain amino acids. This action starves viruses of nutrients necessary for survival and replication.

    [This Message was Edited on 01/29/2003]
  3. PatPalmer

    PatPalmer New Member

    www. hasn't worked so I have pasted the article in mind, its quite lengthy, 6 pages, but hope it helps you.

    Mycoplasmas – The Missing Link in Fatiguing Illnesses
    by Michael Guthrie, R.Ph.


    Mysterious parasites
    Immune Disruption
    How Mycoplasmas Operate Detecting Mycoplasmas
    Current Mycoplasma Research

    ALL RIGHTS RESERVED. Reproduced with the kind permission of Alternative Medicine magazine, September, 2001 (#43). For subscription information call 800-333-HEAL (4325). Website:

    Michael Guthrie R.Ph, is a clinical pharmacist with hospital, business and residential experience, who researches scientifically validated integrative medical approaches.

    These mysterious microorganisms can play a major role in a wide range of diseases including rheumatoid arthritis, chronic fatigue and fibromyalgia syndromes, multiple sclerosis, Gulf War illness, Crohn’s disease and other inflammatory bowel diseases, diabetes and even aggressive cancers. Without proper diagnosis and treatment of mycoplasma infections, curing these conditions can be difficult or impossible.

    Staff Sergeant Sharron Nicolson, Crew Chief of an Army Blackhawk helicopter, was happy to see everyone return safely from their last deep mission into Iraqi territory. She and her unit would soon join the thousands of U.S. military personnel headed home from the Gulf War, and Sharron was looking forward to finishing her pilot training. But shortly after returning to the U.S. in 1991, Sharron began experiencing constant fatigue, muscle and joint pain and other debilitating symptoms similar to those associated with Chronic Fatigue Syndrome (CFS). She found it impossible to meet the demands of flight school and sadly realized her dream of a flying career was over.

    When routine medical tests revealed no answers, Sharron started looking for more help. At the time, she was unaware that over 50,000 soldiers had returned from the Gulf War with similar symptoms. (this number has now grown to over 100,000.) Fortunately, Sharron had the advantage of being the daughter of two top researchers in molecular and cellular biology: Drs Garth L. and Nancy L. Nicolson.

    At the time of Sharron’s return home in the early 1990s, Garth Nicolson, Ph.D., was an esteemed researcher and academic, holding the David Bruton, Jr. Chair in Cancer Research at the University of Texas M.D. Anderson Center. Nancy Nicolson, Ph.D., a former instructor in the Department of Immunology and Microbiology at Baylor College of Medicine, was also a world-renowned molecular biologist. The Nicolsons were compelled into action on behalf of their daughter and other veterans whose disabling symptoms were being misdiagnosed as post-traumatic stress disorder and/or other conditions.

    The Nicolsons realized that Sharron was experiencing similar symptoms to what Nancy had experienced years earlier. The cause of Nancy’s pain and fatigue had finally been diagnosed as an infection of invasive mycoplasmas. The Nicolsons knew these little-known microscopic masters of hide-and-seek were generally responsive to certain antibiotics. They put Sharron on a course of doxycycline antibiotic therapy and she dramatically improved.

    Word spread and members of other Airborne and Special Force Units who had similar symptoms began asking for assistance. The Nicolsons, anxious to help, began researching what became known as Gulf War Illness (GWI). It did not take long for them to realize that there was a significant overlap in the symptoms of GWI, CFS and FMS and other conditions that fall under the umbrella term of ‘fatiguing illnesses.’

    Mysterious parasites

    Mycoplasmas are the smallest self-replicating organisms known to science. Viruses are even smaller, but they lack the genetic machinery to self-replicate. There are hundreds of types of mycoplasmas that can be found in plants, insects and animals, but only a few can be found in the blood and tissues throughout the human body. Not all mycoplasmas found in humans are pathogenic (disease-causing).

    Mycoplasmas have some of the simplest genomes among bacteria. The best known pathogenic mycoplasma, M. pneumoniae, the cause of ‘walking pneumonia,’ contains only 677 protein-coding sequences (by comparison, E. coli contains about 4,000). Mycopasmas do not contain the genes needed for amino and fatty acid or vitamin synthesis; thus, they need to steal certain amino acids, fats, vitamins and other nutrients from host cells in order to survive. Simply put, they are parasitic bacteria. Garth Nicolson explains, “Once in the cell, they steal lipids (fats) like cholesterol from the mitochondria, the components of a cell that produces energy. This makes the mitochondria ‘leaky,’ and they lose electrons. This is similar to a battery running down when the insulation around the battery is removed. This may be why patients with intracellular pathogenic mycoplasmas are almost always fatigued. They have run their cellular batteries down, so that less high energy molecules are available, and they are exhausted at the cellular level.”

    Immune Disruption

    Mycoplasmas can also disrupt the normal orchestration and organization of the host’s immune system. They can cause lymphocytes (white blood cells that bear the major responsibility of the immune system) to secrete inflammatory cytokines (proteins that facilitate cell-to-cell communication), which leads to swelling, inflammation and either stimulation or suppression of the immune system.

    Because pathogenic mycoplasmas leaving a cell they have infected can incorporate much of the host’s cell surface material into their own surface structure, they can instigate an autoimmune response in which the immune system starts attacking the host’s own cells, a process that can result in severe tissue damage and pain.

    Meanwhile the mycoplasmas evade the immune system by hiding inside host cells or fusing with the cellular membrane of the host cells. Certain pathogenic mycoplasmas can also invade lymphocytes and disrupt their functioning without provoking an immune response. Using a trick known as ‘molecular mimicry,” mycoplasmas can even closely resemble host structures to fool the immune system into thinking that they are normal host cells.

    After invading host cells, mycoplasmas can trigger the release of “reactive oxygen” free radicals that modify the RNA and DNA of the cells, an event that can eventually lead to malignant transformation. This phenomenon has been observed in a laboratory study in which benign (non-cancerous) cells infected by mycoplasmas became irreversibly malignant (cancerous) after 18 cell divisions. Dr. Nicolson has been working with two colleagues, Drs Darryl See and Ferre Akbarpour, of the Immune Institute in Huntington Beach. Their research has found that nearly 90% of certain late stage cancer patients show infection with pathogenic mycoplasmas. These mycoplasmas appear to drive the progression of cancer cells, making them more malignant and metastatic (capable of spreading throughout the body).

    Mycoplasmas can also invade the lining of blood vessels, where they appear to facilitate the release of biochemicals that can cause vasculitis (inflammation of blood vessels due to infection) and the formation of plaque inside blood vessel wall surfaces.

    How Mycoplasmas Operate

    Mycoplasmas are well equipped to play biological sleight-of-hand, appearing then disappearing, changing shape, shuffling their surface components, ducking into cells, then parading as normal citizens of the human flora dressed in clothes stolen from the cells they invaded. They’re elusive because they are pleomorphic (structurally changing). They do not have rigid cell walls like most bacteria; instead they possess fluid lipid (water insoluble fate) outer surfaces, and like tiny jellyfish, they can squeeze, bend and move into tight spaces. They can also slide right through laboratory and hospital filters used to produce or maintain sterility – making them one of the most common contaminants in diagnostic laboratories and vaccine manufacturing. In one recent study of vaccines, mycoplasmas were found to contaminate about six percent of commercial vaccines.

    These microorganisms have been quite successful in adapting to many environments, infecting everything from insects to elephants, plants to people. Generally, they are species-specific, but there appear to be many exceptions. Garth Nicolson relates more than one case in which the pets of GWI or CFS patients were exhibiting similar symptoms as their owners, and then tested positive for the same mycoplasmas. No one knows for sure how contagious mycoplasmas are, but it appears transmission may occur among infected people in close proximity for extended periods of time.

    Not everyone who is exposed becomes sick. For example, when Nicolson studied Gulf War veterans’ families who became sick with symptoms similar to GWI, he found that not every member of the family became sick, but those that did become ill had the same infection as found in the sick veteran.

    Detecting Mycoplasmas

    When the Nicolsons began to explore the connection between GWI and mycoplasma, they first had to figure out how to screen people with GWI signs and symptoms for the presence of these pathogens. This was easier said than done. Since mycoplasmas are extremely small, change shape and lack rigid and distinctive cell walls, they’re impossible to find using conventional microbiology techniques. They won’t grow in a standard culture medium, and they are not usually revealed by standard tests that look for antibodies (proteins made by a white blood cell as a primary defense against foreign substances). Some people do show antibody responses to certain mycoplasmas, but antibody tests are still not specific enough to make a diagnosis.

    Using a technique called nucleoprotein gene tracking developed by the Nicolsons, they were able to identify mycoplasma genetic elements in white blood cells of GWI patients. However, conventional Polymerase Chain Reaction (PCR0 tests performed by Army pathologists did not confirm the presence of mycoplasma DNA.

    Eventually, the Nicolsons developed a new PCR test based on techniques used by forensic pathologists to test for DNA from crime scenes. This test revealed that over 40% of the GWI patients were positive for “invasive” mycoplasma (not mycoplasma in superficial sites such as nose, throat and genitourinary tract).

    The Nicolsons found mycoplasmas, especially M. fermentans, inside tissues and in certain white blood cells – the very cells that are normally involved in the destruction of pathogenic invaders. “Mycoplasmas are not found systemically in most normal subjects – only a few percent of asymptomatic subjects have evidence of mycoplasma in their blood. I don’t consider oral mycoplasma, or mycoplasma at other superficial sites to be evidence of an infection. It is more likely simple bacterial colonization, and unless these mycoplasma invade the epithelial cell layer (a thin layer of tissue that covers a surface or lines a cavity), they are probably benign nonpathogenic residents,’ explains Nicolson.

    The researchers’ results were significant and published in several journals. Other investigators, especially those working with Gulf War Vets, were able to duplicate the results, but the Nicolson’s work was largely dismissed or ignored by the Department of Defense. However, in February, 2000, psychiatrist Lt. Col. Charles Engel, M.D., director of the Gulf War Illness Center at Walter Reed Army Medical Center, presented pivotal information to a CFS coordinating board at the National Institutes of Health. A study conducted independently for the U.S. Departments of Defense and Veterans Affairs demonstrated that approximately 40% of more than 1,600 GWI patients were positive for mycoplasma infections, and 80% of those were positive for M. fermentans. Lt. Col. Engel also stated that he felt that these infections might also be an important cause of CFS. The study findings nearly duplicated the figures that the Nicolsons had reported earlier: 45% positive for mycoplasma; 80% with M. fermentans.

    Currently, other prominent researchers are corroborating the role of mycoplasma in disease. The number of known conditions in which mycoplasmas play a role is growing, thanks to advances in detection. Mycoplasmas are now said to be contributors, or at least cofactors, in a number of conditions, including CFS/CFIDS, fibromyalgia syndrome (FMS), lupus, multiple sclerosis (MS), psoriasis, scleroderma, Chrohn’s diseases, solid cancers, leukemia, lymphoma, Amyotrophic Lateral Sclerosis (ALS), pelvic inflammatory disease (PID), asthma, atypical pneumonia, Sjogren’s syndrome, interstitial cystitis, Alzheimer’s and cardiovascular diseases. Mycoplasmas have also been associated with a variety if autoimmune diseases that can cause definite changes in nerve conduction, demyelation (a degenerative process that erodes away the myelin sheath that normally protects nerve fibers) and sensitivity.

    Dr. Nicolson says that the role of mycoplasmas in various illnesses and diseases is now gradually being accepted, especially in those once long-suspected as “psychological.” Acceptance is due to the recognition that symptoms cannot be explained solely by psychological criteria, and because discrete clinical markers have been discovered. For example, the vascultitis (inflammation of blood vessels) found in mycoplasma-positive patients correlates with evidence of mycoplasma-induced abnormalities in blood cells and proteins related to blood clotting.

    Current Mycoplasma Research

    Recently, Dr. Nicolson has focused on various autoimmune neurological diseases such as ALS, MS, Lyme disease and others. For example, approximately 85% of patients with ALS (“Lou Gehrig’s disease”) tested positive for systemic mycoplasma infections, and most of those infections involve M. fermentans and/or M. hominis.

    Dr. Nicolson is working closely with Drs. See and Akbarpour on ALS, a condition in which patients lose control of their motor and skeletal muscles over a period of two to five years. Their research revealed that almost all ALS patients have co-infections with a virus from the enterovirus family (a virus related to the polio virus that replicated mostly in the gastrointestinal tract) – and mycoplasmas. The three doctors have been conducting a clinical treatment study of ALS utilizing antibiotics, antivirals and nerve growth factors. They are seeing positive results so far, as measured by increases in muscle strength.

    Other illnesses often have multiple strains of mycoplasmas, or mycoplasmas combined with co-infections of other bacteria or viruses. “In recent published studies from our laboratory, most CFS and FMS patients had multiple mycoplasmal infections. The number of different mycoplasmal species in these patients increased with the number of years the patients were sick and with the severity of their illness,” says Dr. Nicolson.

    “We have found that when the few asymptomatic subjects have blood mycoplasmal infections, they have only one species, versus when we examine patients who are sick with various chronic illnesses, they usually have multiple species of mycoplasmas and other infections such as the cytomegalovirus. In Lyme disease, we often find mycoplasmal co-infections, most frequently, M. fermentans, along with the Borrelia that causes it. This makes sense when you consider that insects, such as the ticks that carry the Borrelia, also can carry mycoplasmas. Dr. Eli Mordechai of Medical Diagnostics Lab of New Jersey has exactly the same findings in Lyme disease patients.”

    All the researchers above agree that long-term antibiotics must be initiated to treat mycoplasmal infections. Additional strategies must be applied to protect and strengthen the immune system and provide essential nutrients and vitamins.

    “We always try to use the least toxic approaches in working with pathologies, so we use a lot of natural products,” Dr. See says. For example, probiotics and undenatured whey protein isolates are used to support the GI tract – a combination that helps prevent overgrowth of undesirable microorganisms. “However,” adds Dr. See, “in our experience, and in the literature, we have found non other way to deal with mycoplasmas than fairly long-term treatment with certain antibiotics.” Fortunately, the Nicolsons and their colleagues have succeeded in helping many veterans and others infected with mycoplasmas, but controversies surrounding their work and these mysterious microorganisms still persist.

    Says Dr. Nicolson, “Future efforts to explain and treat a variety of illnesses that currently have unknown etiologies (causes) will undoubtedly focus more on chronic infections as underlying causes or as opportunistic infections in immune-impaired patients. We have found that chronic infections caused by mycoplasmas, viruses and other microorganisms cannot be ignored, because these patients will remain ill and not recover from their illnesses if these infections remain untreated.


    Additional information on mycoplasma treatment, yeast overgrowth, nutrition, and treating multiple infections associated with mycoplasmas can be found on the Institute for Molecular Medicine’s Web site:

  4. Trini

    Trini New Member

    Hi there,

    Gail Kansky is pres of national cfids foundation based in MA and she personally told me that the ciguatera toxin which is what Dr. Hokoma at the Univ of Hawaii's study is about is passed in pregnancy. Many cfs patients are positive for this. Read somewhere that it may not specifically be ciguatera but another toxin produced from the liver. Time will tell.

    She cautioned me to be tested before even thinking about getting preg. I just got my results and was positive off the charts. Sooooo, I'm waiting for more info from the study that she told me wud be in their winter newsletter bec i nor my dr has any clue what to do abt this. Supposedly another study in FL suggest a drug used to lower cholesterol to rid the toxin from fat stores. my husband and i have no kids and only been married two and a half yrs. So I feel ur guilt from the other side.

  5. Combatmedic

    Combatmedic New Member

    She gave me LIFE! Not fibro, not CFS, but she gave me life in the first place! But, now, I've been soo sick I think she feels like she gave me nothing but pain and suffering. Mind you that's how SHE feels, not ME. I hate to say it, but, if there is one positive about these DD's---they have made me and my mother even closer, when I did not think it possible. Anyone who has this DD knows how isolating it is, how NO ONE without it understands, or could possibly fathom the pain/fatigue. My mother having the same thing, we've become like best friends. Still though, I think no matter what I say, she still feels guilty....that's the mother in her. I guess it never goes away....I'm 25 years old now, and Mom feels helpless because she can't "fix my boo-boo" (LOL) and what a BIG boo-boo it is. You know, this isn't a cut on my knee that she can just slap some bactine (wow, I wish they still had that stuff!) on, and it will heal, so, I think she just feels extremely frustrated and helpless.
    As far as heredity goes, the doctor who diagnosed me (at IU Med Center) said, "yes, we tend to see it in families" (so, basically, yeah, we just can't prove it yet). My aunt has it, my mother has it, my other aunt has it, my father's sister has it, and, her daughter is developing symptoms at 23 years old.) So, in my opinion, YOU BETCHA! Oh, and my maternal grandmother had it also, but, of course back then it was called everything else under the sun! Fibrositis, myalgias, neuropathies, on and on and on.......

    I hope and pray that your daughter does not have it, but, if she does......PLEASE PLEASE do not feel guilty or blame yourself. I think that we are all amist an epidemic, and I'm not sure what we can do about that, but DON'T blame yourself. You carried her in your belly for nine months. She knows you would never "give" her anything on purpose, she knows you love her more than life itself. IT IS NOT YOUR FAULT.

    From, a daughter, 2nd generation fibromyalgiac/CFS
    who also has a genetic disorder called Malignant Hyperthermia

    I hope that this helps you and I hope it all came out the right way, I am having severe congnitive difficulties, as I am in a BIG flare with several of my illnesses.

    Bigggggg cyber hugs for you,

  6. Pat UK

    Pat UK New Member

    is 28, round about the same age as I started getting symptoms, I strongly believe she is developing cfs. Every time she complains about something wrong with her it is another of my symptoms. I am trying to deny it and tell myself I am just paranoid but the evidence is right in front of me. She says she is tired due to a hard day or stresses at work and I know she is denying it also. I hope you are wrong and your daughter is okay but I think there is a hereditary factor in this illness.