Well, my GP says she doesn't suspect anything else. Thinks it is all fibro and I could go back to rheumy for follow up. Funny because rheumy says don't come back and follow-up with GP. You have fibro. I guess now I play the waiting game everyone talks about... Waiting to see if and when more symptoms show up and hoping they don't.
Thanks for words of encouragement. We are all baffled. I know. I'm moving onto the mycoplasma theory. Seen drs detected it in lymphocytes of blood samples, and after several 6 week courses of antibiotics, rotating biaxin, doxycycline, zithromax, and cipro, they are no longer in blood. Apparently this is old news, too. But, does it support the theories of a virus currently being studied? Maybe... Why dont other doctors know about this? Dr. Garth Nicolson does.
Multiple mycoplasmal infections detected in blood of patients with chronic fatigue syndrome and/or fibromyalgia syndrome.
Eur J Clin Microbiol Infect Dis 1999 Dec;18(12):859-65
"The aim of this study was to investigate the presence of different mycoplasmal species in blood samples from patients with chronic fatigue syndrome and/or fibromyalgia syndrome. Previously, more than 60% of patients with chronic fatigue syndrome/fibromyalgia syndrome were found to have mycoplasmal blood infections, such as Mycoplasma fermentans infection. In this study, patients with chronic fatigue syndrome/fibromyalgia syndrome were examined for multiple mycoplasmal infections in their blood. A total of 91 patients diagnosed with chronic fatigue syndrome/fibromyalgia syndrome and with a positive test for any mycoplasmal infection were investigated for the presence of Mycoplasma fermentans, Mycoplasma pneumoniae, Mycoplasma hominis and Mycoplasma penetrans in blood using forensic polymerase chain reaction. Among these mycoplasma-positive patients, infections were detected with Mycoplasma pneumoniae (54/91), Mycoplasma fermentans (44/91), Mycoplasma hominis (28/91) and Mycoplasma penetrans (18/91). Multiple mycoplasmal infections were found in 48 of 91 patients, with double infections being detected in 30.8% and triple infections in 22%, but only when one of the species was Mycoplasma pneumoniae or Mycoplasma fermentans. Patients infected with more than one mycoplasmal species generally had a longer history of illness, suggesting that they may have contracted additional mycoplasmal infections with time." [Abstract]
The advances in research on Fibromyalgia Syndrome (FMS) over the last 5 years has targeted specific links and correlations which might indicate a dysregulation or imbalance of the neuroendocrine system, especially the HPA axis, which may well explain many of the seemingly unrelated symptoms presented by FMS patients. Research supports that various components of the central nervous system appear to be involved, including the hypothalamic pituitary axes, pain-processing pathways, and autonomic nervous system. The advances in gene research during this same time peroid has provided new evidence in the identification and pathogenesis of specific species of mycoplasmas which might have the ability to cause a dysregulation of the neuroendocrine system.
Mycoplasmas are a specific and unique species of bacteria - the smallest free-living organism known on the planet. The primary differences between mycoplasmas and other bacteria is that bacteria have a solid cell-wall structure and they can grow in the simplest culture media. Mycoplasmas however, do not have a cell wall, and like a tiny jellyfish with a pliable membrane, can take on many different shapes which make them difficult to identify, even under a high powered electron microscope. Mycoplasmas can also be very hard to culture in the laboratory and are often missed as pathogenic causes of diseases for this reason.
Today, over 100 documented species of mycoplasmas have been recorded to cause various diseases in humans, animals, and plants. Mycoplasma pneumonia as well as at least 7 other mycoplasma species have now been linked as a direct cause or significant co-factor to many chronic diseases including, rheumatoid arthritis, Alzheimer's, multiple sclerosis, fibromyalgia, chronic fatigue, diabetes, Crohn's Disease, ALS, nongonoccal urethritis, asthma, lupus, infertility, AIDS and certain cancers and leukemia, just to name a few.(1-6) In 1997, the National Center for Infectious Diseases, Centers for Disease Control and Prevention's journal, Emerging Infectious Diseases, published the article, Mycoplasmas: Sophisticated, Reemerging, and Burdened by Their Notoriety, by Drs. Baseman and Tully who stated:
"Nonetheless, mycoplasmas by themselves can cause acute and chronic diseases at multiple sites with wide-ranging complications and have been implicated as cofactors in disease. Recently, mycoplasmas have been linked as a cofactor to AIDS pathogenesis and to malignant transformation, chromosomal aberrations, the Gulf War Syndrome, and other unexplained and complex illnesses, including chronic fatigue syndrome, Crohn's disease, and various arthritides."
Mycoplasmas, unlike viruses, can grow in tissue fluids (blood, joint, heart, chest and spinal fluids) and can grow inside any living tissue cell without killing the cells, as most normal bacteria and viruses will do. Mycoplasmas are frequently found in the oral and genito-urinary tracts of normal healthy people and are found to infect females four times more often than males, which just happens to be the same incidence rate in rheumatoid arthritis, fibromyalgia, Chronic Fatigue and other related disorders.(7) Mycoplasmas are parasitic in nature and can attach to specific cells without killing the cells and thus their infection process and progress can go undetected. In some people the attachment of mycoplasmas to the host cell acts like a living thorn; a persistent foreign substance, causing the host's immune defense mechanism to wage war. This allergic type of inflammation often results in heated, swollen, and painful inflamed tissues, like those found in rheumatoid diseases, fibromyalgia and many other autoimmune disorders like lupus and MS, Crohn's and others. In such cases the immune system begins attacking itself and/or seemingly healthy cells. Some species of mycoplasmas also have the unique ability to completely evade the immune system. Once they attach to a host cell in the body, their unique plasma and protein coating can then mimic the cell wall of the host cell and the immune system cannot differentiate the mycoplasma from the body's own host cell.
Mycoplasmas are parasitic in nature because they rely on the nutrients found in host cells including cholesterol, amino acids, fatty acids and even DNA. They especially thrive in cholesterol rich and arginine-rich environments. Mycoplasmas can generally be found in the mucous membrane in the respiratory tract. They need cholesterol for membrane function and growth, and there is an abundance of cholesterol in the bronchial tubes of the respiratory tract. Once attached to a host cell, they then begin competing for nutrients inside the host cells. As nutrients are depleted, then these host cells can begin to malfunction, or even change normal functioning of the cell, causing a chain reaction with other cells (especially within the immune and endocrine systems). Mycoplasmas can even cause RNA and DNA mutation of the host cells and have been linked to certain cancers for this reason. Mycoplasmas can also invade and live inside host cells which evade the immune system, especially white blood cells. Once inside a white blood cell, mycoplasmas can travel throughout the body and even cross the blood/brain barrier, and into the central nervous system and spinal fluid.
The negative impact of a mycoplasmal infection on the human immune system is undisputed. Due to it's ability to either activate or suppress the immune system, it is now being considered one of the culprits of many autoimmune diseases. Yet, scientists still argue over the "chicken or egg first" type of sequence of events. Do the mycoplasmas begin growing and replicating first and then weaken or deregulate the immune system? Or does a weakened immune system (caused by stress, poor diet or other illness) allow the mycoplasmas to take hold and begin their opportunistic growth resulting in chronic disease and to weaken and deregulate the immune system even further? The answer is probably both, and it becomes one of the most critical treatment aspects of mycoplasmal infections. In immunodeficient patients it can be very difficult to treat these mycoplasma infections with appropriate broad spectrum antibiotics which are immunosuppressive themselves.
Regardless, many physicians and rheumatologists are treating their arthritis, CFISD, fibromyalgia and other mycoplasma infections with long term antibiotic therapy. One of the more popular conventional protocols involves rotating multiple 6 week cycles of Minocycline or Doxycycline (200-300 mg/day), Ciprofloxacin (1,500 mg/day), Azithromycin (250-500 mg/day, and/or Clarithromycin (750-1,000 mg/day) among others.(1) Sometimes the side effects of these strong antibiotics can be as bad as the symptoms of the diseases they are treating since a minimum of 6 months and up to two years of antibiotic therapy may be required. Many doctors now believe that antibiotics should not be used solely or exclusively to treat mycoplasmal infections, without addressing rebuilding the immune system which is imperative for a complete recovery and eradication of infection. Others are using more natural antibiotics found in plants which can be as effective or more effective with fewer side effects or negative impact on the body. These include olive leaf extract products, urva ursi, and Neem leaf or seed extracts.
Once the mycoplasmas are being controlled by some form of effective natural or chemical antibiotic, re-nourishing and replacing the nutrients drained from the infected host cells can help speed recovery and reduce symptoms. A general multi-vitamin supplement plus extra C, D, E, CoQ-10, beta-carotene, quercetin, folic acid, bioflavoids and biotin are necessary and helpful when recovering from a mycoplasmal infection
Supplementing back the depleted amino acids has been reported to be helpful in some recovering from these infections. These include L-cysteine, L-tyrosine, L-glutamine, L-carnitine, and malic acid. Remember, however, that mycoplasmas thrive on arginine! Avoid L-arginine supplements and multi-amino acid formulas containing L-arginine, as well as foods rich in arginine to avoid feeding the mycoplasmas. The richest food sources of arginine (to avoid) are nuts and seeds, including the oils derived from seeds and nuts which should be eliminated or drastically reduced in the diet.
Vitamins A, C and E, and other antioxidants found in natural plants, have also been reported to help speed recovery and to minimize the oxidative stress caused by mycoplasmas. One of the most popular antioxidants sold today are various extracts of grape seeds. Remember however, most seeds are rich in arginine, including grape seeds, and should generally be avoided.
Other helpful supplements to replenish drained nutrients from parasitic mycoplasmas are generally indicated based upon which specific cells the mycoplasma might be feeding on and which nutrients are being depleted. Specifically with fibromyalgia patients, leading research indicates that many of the hormones and enzymes produced in the neuroendocrine system and Hypothalamus-Pituitary-Adrenal Axis are depleted or malfunctioning which have the ability to cause many of the symptoms found in these patients.
Finally and most importantly is nutritionally supporting the immune system. There are various natural products sold today which can stimulate and support immune function. There are many natural products available in the market place today which nutritionally support immune function. One of the best from the rainforest is cat's claw. Also see Raintree's Immune Support. Another important consideration is the elimination of drugs that might suppress immunity. Dr. Garth Nicolson, one of the world renown experts on mycoplasmas states: "We have recommended that patients be taken off antidepressants and other potentially immune-suppressing drugs. Some of these drugs are used to help alleviate certain signs and symptoms, but in our opinion they can interfere with therapy, and they should be gradually reduced or eliminated."(1) This of course would be indicated for many fibromyalgia and Chronic Fatigue patients who are routinely prescribed antidepressants.
Testing for mycoplasmas is much harder and more complicated than testing for all other bacteria, which is one of the main reasons conventional medical practitioners mis-diagnose or miss these types infections. The most reliable testing method offered today is with a lab test called a PCR test (Polymerase Chain Reaction). Even performing a PCR lab test on a standard whole blood sample may not find the mycoplasma, simply because the mycoplasma may be residing in other fluids and tissues in the body and not the blood (i.e.; the fluid in the joints, in the spinal fluid, or in any tissue cell like heart, liver, pancreas, endocrine organs, etc.). A PCR test is generally performed by specific mycoplasma species. These laboratory tests can be expensive, but are insurance reimburseable if ordered by your primary care physician. Specific mycoplasma PCR tests are available through these companies, both of which have more information on mycoplasmas in general and testing at their websites:
The Institute for Molecular Medicine
15162 Triton Lane
Huntington Beach, CA 92649
714-903-2900
immed dot org
Immunosciences Lab, Inc.
8730 Wilshire Blvd, Suite 305
Beverly Hill, CA 90211
310-657-1077
immuno-sci-lab dot com
I be gettin me some neem leaf. You can google lots of info on this.
