Treating the pain of fibromyalgia

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Q&A | Fibromyalgia Drugs | Treating the pain of fibromyalgia

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Name: Robin1237 Title of Question: Treating the pain of fibromyalgia

Question: It is now my experience that fibromyalgia is Lyme disease, a bacterial infection. As such, people are trying lots of various treatments. One of them is antibiotics. One is the herbs written about by Stephen Buhner in his book, "Healing Lyme". One is the Marshall Protocol, which uses benicar to raise the body's vitamin D level. One is oxygen treatments. One is taking a lot of supplements. All of these and more are discussed at www.lymenet.org/Flashdiscussion/MedicalQuestions ?

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Name: eyewuvu | Date: September 26, 2007, 23:01

Answer: FYI- for some people their fibro symptoms may actually be lyme disease, but please avoid generalizations. I have been tested twice for lyme and have come up negative. =

Name: Robin1237 | Date: October 4, 2007, 6:25

Answer: Hi eye -- the issue of Lyme tests is a much-discussed one, because of the kind of test ordered, the lab it's done through, and then whether the infection manages to show up in the test. In general, the best testing lab is Igenex(www.Igenex.com) and the most specific tests are two Western blots(IgG and IgM). Even then, some people's infections do not show up. That's why Lyme and coinfections are also considered clinical diagnoses and often a trial test of antibiotic is tried to see if someone responds. When I went on clindamycin antibiotic, my fibro pain went to zero in one week, as well as several symptoms diminished too. =

Name: ohwhatpain | Date: October 7, 2007, 1:47

Answer: Robin=Uh yeah! Thats been thought of long ago and yes some people have lyme disease, but FMS is not Lyme disease because if it was the Doctors would have figured it out and there wouldn't be 2million people with FMS and we wouldn't be here on this forum talking about it. FMS has been government funded since about 1992 (Research) and everyone with Fibro and a computer has compiled every bit of information that is out there. =

Name: SarahO. | Date: December 4, 2007, 16:36

Answer: Hey Robin!*)! Hey Eyewuvu!! Re Lyme being seronegative- here is an extreme case of bad neuro Lyme- Glenn Edward Killion. I knew his Mom, she was my friend, a great Lyme activist. This is a true story. Glenns Mom & I wrote it up together: Lyme Disease: A 'Clinical' Diagnosis Can Mean Life or Death by Sarah Olson with the assistance of Beverly Killion Nave Glenn Edward Killion was a loving husband, loving father and life-long Californian. He spent his favorite times with his family in the California wilderness, fishing with his son Matt, hiking, backpacking and hunting with his family. It was on such a family hunting trip in 1994 that Glenn Edward Killion received a tick bite and had a subsequent rash at the bite site- and went on with his life. He, his mother and father had noticed the rash and had even joked about looking like a target, not realizing its significance. It was some time after this that he began to feel unwell, but he made no connection between the tick bite, the rash- and his illness. Doctor visit after doctor visit was made, year after year, until he was in chronic pain and suffering from multi-system problems. He lived in Chico, California, a hotspot for Lyme disease in California. He lived with his wife Kendra, his children Matt and Heather, and was on loving terms with his mother, father and brothers. With such a loving family, solid employment and so many things he loved to do- from karate to sports, from cooking to hiking to simply being with his children, life should have continued for him in an amiable way. Instead, he was sick. Doctor after doctor was unable to find anything organic to point to in his illness. There were suggestions he seek psychiatric help. He was depressed; it was true. He admitted that- but pointed to the physical problems he insisted he was having in his life. At one point he was suicidal and committed himself because he did not want to die. He loved his children more than all the world; he wanted to watch them grow up. Somewhere in the years and years of pain and doctors, Glenn Edward Killion had remembered that tick bite, had remembered that rash and realized what he had. The doctors he told this to tested him for Lyme disease- but he tested negative - and when he tested negative they repeatedly shrugged him off as a psychiatric case, which, to someone suffering severely, was devastating. Tests for Lyme disease are not accurate enough to be recommended as screening protocol, meaning Lyme disease should never be ruled out because of negative blood tests. According to the CDC and to the FDA Advisory on Lyme tests, a Lyme disease diagnosis is supposed to be clinical, meaning based on symptoms rather than test results. In actuality, finding a doctor who will treat seronegative Lyme is rare. There are only a few doctors in all of California who will treat on such a basis. Mainstream doctors are not aware of the problems with Lyme disease testing- and Glenn Edward Killion paid the price for this ignorance. Finally, when he was chronically ill and debilitated almost to the point of being bedridden, he found a doctor who took him seriously. This doctor diagnosed him with chronic Lyme disease despite negative tests and a negative spinal tap. There are many reasons for false negative Lyme tests, from patients who lack the average antibody response and who are seronegative, to different strains of Lyme which are not read by the standardized tests to the very real inadequacies of the tests to begin with. Simply put, there is controversy over the numbers of people who have Lyme disease- because negative tests do not mean you are not infected. Even spinal taps are not definitive, because only 20% of people with chronic Lyme will have positive spinals. In CSF, the Lyme spirochetes tend to convert to cystic form, which tests negative. Again, mainstream doctors are generally ignorant. By this time, Glenn was very ill. He had lost his job- and he had always had a good work ethic. He was no longer able to care for himself. He would get lost if he left the house sometimes. He hallucinated. He was in pain. The last two months of his life were spent in agony. His children hurt to watch him. His mother did all she could. His entire family stepped in to care for him and the family as much as they could. An IV line was put into his arm and expensive IV antibiotics were begun. At last, he had a diagnosis and appropriate treatment. It came too late. On the morning of March 28, 1998, Glenn's father went to wake him up and found him dead in his bed. He was 36 years old. His son Matt was 6, his daughter Heather only 4. There is no description for the devastation his family endured. The question that remained was: did Glenn Edward Killion have Lyme disease? Glenn believed he did, despite negative test after negative test. His family believed he did. His doctor had diagnosed him with it. Yet, there are many doctors who scoff at seronegative Lyme disease, who question its existence, who questioned his diagnosis even down to the day of his death and who had the potential to cast serious allegations at the doctor who diagnosed and treated him. For a final answer to this world, Glenn's widow gave permission for slides to be taken, small slices of his heart and his brain. The slides were sent to noted pathologist Dr. Paul Duray at the National Institute of Health. Lyme spirochetes were found in his heart and brain. The story of Glenn Edward Killion is not that of the lone Californian who has died of Lyme disease. We have lost many Californians to this illness. In 1999, two Californians died of Lyme disease, Frieda Gaultney, a loving wife to her husband Jim for almost 55 years and John Every, a Vietnam Veteran and a resident of Hemet. Since the disease is notably under-diagnosed, some epidemiologists estimate by a factor of 10, two known California Lyme disease deaths in one year, 1999, is a sentinel event. A woman from Big Bear died in January 2000 after many years of illness. Dr. William Nichols suffered from Lyme disease for twelve years, was losing his vision and his ability to walk before taking his own life on April 12, 2000. A woman in Northern California died just last week. The litany of the lost includes the pioneer videographer Julian J. Backus, a TV producer, an actress, an 8 day old baby boy and untold more. But Glenn Edward Killions story is different. Glenn Edward Killions story is different because his death was, in hindsight, so preventable. If anyone should have been caught in time, it was Glenn. He fit the high-risk profile for Lyme disease. He had a known tick-bite history- which only 20% of people with Lyme disease have, he had a subsequent rash, which again only a fraction of people have. Not only that, but his subsequent rash was not a plain red splotch, as many Lyme rashes are, but a bulls-eye rash, which is by itself diagnostic of Lyme disease. He had, in hindsight, classic presentation of Lyme disease- but negative tests. When he was bitten and had the rash, antibiotics could have made him well without a doubt. When he began to get sick after the bite and rash, antibiotics could have made him better and perhaps even well. But by the time he received help, he was living the hell of late tertiary-stage Lyme disease. He sought for so many years help which was denied him for what he knew he had- Lyme disease. He had a tick bite, he had the rash and he knew what he was experiencing was real. He should not have had to die to prove it because of the ignorance of mainstream doctors about a clinical Lyme diagnosis. His story is also different because he believed in himself enough to k now what he ahd despite doctor after doctor telling him he didn’t. His story is different because he didn’t accept a psychiatric diagnosis like most people would have- and because his family sought the proof for the world when it was too late for him. With greater education about Lyme disease in California and more awareness about the limitations of Lyme disease testing, more people will live who otherwise will suffer and perhaps, like Glenn Edward Killion, even die. Negative tests should never rule out Lyme disease- not even a negative spinal tap. Period. =

Name: SarahO. | Date: December 4, 2007, 16:39

Answer: Glenn Edward Killion http://www.geocities.com/Heartl-and/Hills/5854/gkillion.html repeatedly- seronegative in life but Lyme spirochetes found in heart & brain postmortem. Glenn had fibromyalgia. =