Signatures 2293 total
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151
Name: Ellen Fauerbach on Dec 16, 2007Comments: Let doctors treat lyme as they see fit.Flag
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152
Name: Betsy Munson on Dec 16, 2007Comments:Flag
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Name: Sharon R Morrissey on Dec 16, 2007Comments:Flag
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Name: Kathy Viste on Dec 16, 2007Comments:Flag
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Name: Ellen Farkas MD on Dec 16, 2007Comments: Dr. Jones saw my children 9 months after I was diagnosed with chronic CNS lyme and co-infections. I had been practicing OB/GYN when some symptome flared up and in the course of their evaluation, I became disabled. It took 2 more years and unnecessary surgury and treatment with strong immunosuppressants because a chronic infection was misdiagnosed as an autoimmune disease. My son had been diagnosed as autistic and could not interact or express himself in writing, although he was extremely bright. My daughter was so low tone that she had been receiving PT since she was 15 months old and could not participate in any sports or dance with her friends. Dr. Jones diagnosed them both with gestational lyme's disease, and said they were the oldest children he had ever diagnosed as such. That tragedy was because of the delay in my diagnosis. The MD who diagnosed me, when he heard that I had children with developmental delays, insisted they be evaluated. It took a long time to see Dr. Jones, but blood tests confirmed the diagnosis. My daughter's PCR was even positive, which means that the lyme DNA was still in her body. After 6 months of treatment, the children were seen be the pediatric neurologist who had been following them, and was not lyme literate. She was amazed in the improvement in Elana's muscle tone and claimed it could not be explained by simple growth and maturation. At one year, Elana could take a running jump from her exam room entrance and leap onto the exam table, the doctor almost fell over! However, Ben was not doing much better, and Elana was still complaining of itching all over her body, which she had had since she could talk, and has scars on her little body from scratching. I called Dr. Jones with these complaints at about 1 year into treatment. Since Elana seemed to be allergic to Zithromax, he treated her with Bactrim for suspected Bartonella, which I had, and which cannot be treated with Levaquin, as in adults. Her itching was gone in a week. On the same phone call, I mentioned that Benjamin's ADD was getting worse and I couldn't do homework with him at all. At this time he added Tindamax to his regimen on weekends. He had a few weekends with flu like symtoms, and then broke out into a new perosn. He began to socialize, talk to friends on the phone, do his homework as soon as he got home. The prior summer he had gone to a camp for developmentally delayed children, which he got nothing out of, but we had little choice. After starting the Tindamax in May, he started a camp for regularly developing children, run by a local private school, where the children picked 2 electives for the day, although placed in a group with children their own age. He thrived there. He took tennis as an elective! They did an exchange program at the end of that summer when Israel was being bombed and the children in some cities were living in bomb shelters. We had a young girl living with us for 2 weeks, he still writes to her , E-mails her, calls her, and she called to invite us to her brother's wedding. None of this would have been possible if not for Dr. Jones. My daughter would still be tripping over her own feet, and who knows what would have become of my son I only wish he would take me as a patient too, I am getting worse every year. But my suffering saved my children's lives, they were the lucky ones!Flag
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Name: Steve Edwards on Dec 16, 2007Comments: Lets put our efforts in the right directionFlag
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Name: Anonymous on Dec 17, 2007Comments: Doctors need the CDC to change the criteria for long care treatment of lymes.Flag
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Name: Kathie Roberts on Dec 17, 2007Comments: I have been sick since 1999, treated by IV antibiotics and the symptoms returned after 6 months. They say I'm cured but I'm living in awefull pain every day, and no Dr. seems to know why. My children have suffered watching me go through this, and then 1 of them got it too. Something has to be doneFlag
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Name: Betty Gordon on Dec 17, 2007Comments:Flag
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Name: Doug Harrison on Dec 17, 2007Comments:Flag
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Name: Patricia Wilcox on Dec 17, 2007Comments:Flag
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Name: Robert R Martin on Dec 17, 2007Comments: I have lyme and I wouldnt have to keep treating it if I would have been treated and tested correctly in the first place. 4 different hospital lyme tests and neg everytime for 16 years tested every year because I had tick bites everyear. Finally found a LLMD and he tested me and provoked a responce with abx's both western blot and 3 day urine tests were all HIGH Possitives. So thanks alot.Flag
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Name: Anonymous on Dec 17, 2007Comments: I have lyme and I wouldnt have to keep treating it if I would have been treated and tested correctly in the first place. 4 different hospital lyme tests and neg everytime for 16 years tested every year because I had tick bites everyear. Finally found a LLMD and he tested me and provoked a responce with abx's both western blot and 3 day urine tests were all HIGH Possitives. So thanks alot.Flag
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Name: Mary Vogenberger on Dec 17, 2007Comments: I am a chronic Lyme Disease patient... undiagnosed for 25 years, with lyme arthritis. Among other arthritic problems, I have had one hip replacement and have been told I am in the final stages of arthritic deterioration in my other hip. Something has to be done in order to generate better testing and treatments for this devastating disease. There is a drastic need to spread scientific proven knowledge of this disease, not only to the general public, but also to the medical profession that I feel has blatantly deserted those of us suffering from this disease... not to mention thousands that are suffering and undiagnosed due to the lack of knowledge or proper testing. Mary VogenbergerFlag
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Name: Lane on Dec 17, 2007Comments:Flag
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Name: Adam Imbruglio on Dec 17, 2007Comments:Flag
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Name: Julie Antenucci on Dec 17, 2007Comments: I had a bull's-eye rash after confirmed tick bite. Very ill with Lyme for five years. Most doctors say I'm mentally ill, not physically ill. Thanks to them, I could not get the early care I needed so became chronic. My life is ruined!Flag
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Name: Anonymous on Dec 17, 2007Comments:Flag
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Name: Anonymous on Dec 17, 2007Comments:Flag
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Name: Susan Carter on Dec 17, 2007Comments:Flag
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Name: Tom Hume on Dec 17, 2007Comments:Flag
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Name: Anonymous on Dec 17, 2007Comments:Flag
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Name: Deanne Smith on Dec 17, 2007Comments: something NEEDS to be done NOW!Flag
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Name: Jeannine Bennett on Dec 17, 2007Comments: It took me many, many years to get a diagnosis of Lyme Disease, after first being diagnosed with fibromyalgia. I went from Dr. to Dr. trying to find the cause of all my symptoms. I ask that you please look further than the IDSA for accurate information.Flag
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Name: E. Ann Smith on Dec 17, 2007Comments:Flag
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Name: E. Ann Smith on Dec 17, 2007Comments:Flag
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Name: Richard Laferriere on Dec 17, 2007Comments: Two standards of care for tick-borne illness which have undergone rigorous review. Why should patients be shut out of care for no valid reason, especially when disability, suffering and death may resultFlag
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Name: Julie Ostoich on Dec 17, 2007Comments: The tests and criteria commonly being used for Lyme detection are inadequate and consistently yield false negative results. Misdiagnosis or no diagnosis is the norm for Lyme sufferers. This must change. More sensitive and accurate tests must be implemented to properly diagnose and detect and treat this epidemic.Flag
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Name: Paul Smith on Dec 17, 2007Comments: please get better, more standardized testing. please!!!!Flag
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Name: Bernice Noel on Dec 17, 2007Comments:Flag
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Name: Kimberly Welch on Dec 17, 2007Comments:Flag
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Name: Heather Breen on Dec 17, 2007Comments:Flag
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Name: Sarah Heimann on Dec 17, 2007Comments: This is no joke. I have lost the quality of life that I used to know and spend most days struggling just to exist comfortably. Please help us!Flag
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Name: April Holland on Dec 17, 2007Comments: Doctors need to be aware of Lyme Disease and not push it off like it doesn't exist!Flag
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Name: Granville Freeman on Dec 17, 2007Comments:Flag
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Name: David Evans on Dec 17, 2007Comments:Flag
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Name: Joy R. Walker on Dec 17, 2007Comments: In 1992 and 1993, IDSA author Dr. Mark Klempner published two studies in the Journal of Infectious Diseases documenting how Lyme "spirochetes can survive antibiotic treatment through intracellular sequestion within fibroblasts" making them "among the small number of bacteria that can cause chronic infection by localizing within host cells where they remain sequestered from some antimicrobial agents" (1993; 167:1074-1081). Or as he stated in the same journal"The Lyme disease spirochete . . . can be recovered long after initial infection, even from antibiotic-treated patients, indicating that it resists eradication by host defense mechanisms and antibiotics . . . several eukaryotic cell types provide the Lyme disease spirochete with a protective environment contributing to its long-term survival" (1992; 166(2):440-4). Likewise, Dr. Raymond Dattwyler proclaimed in Reviews of Infectious Diseases 1989, 11(6)S6; S1494-8, "Lyme borreliosis is a chronic infectious disease caused by the spirochete Borrelia burgdorferi . . . They [Lyme spirochetes] have been demonstrated in tissues obtained from individuals with high levels of antiborrelial antibodies, a finding that indicates the presence of immunity alone does not guarantee eradication of this organism." In a New England Journal of Medicine study, Drs. Dattwyler and John Halperin (also of the IDSA) "studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed." These "chronic Lyme" patients tested negative on currently-available blood tests: "Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunoflourescence assay . . . We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of chronic Lyme disease." Dattwyler RJ; Volkman DJ; Luft BJ; Halperin JJ; Thomas J; Golightly MG. Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi. New England Journal of Medicine 1988, 319(22):1441-6 A year earlier these same two researchers reported on "the clinical courses of 5 patients with Lyme disease who developed significant late complications, despite receiving tetracycline early in the course of their illness. All 5 patients had been treated for erythema chronicum migrans with a course of tetracycline that met or exceeded current recommendations" (Failure of tetracycline therapy in early Lyme disease. Arthritis & Rheumatism 1987, 30:448-450.) In 1993, Dr. Halperin co-authored an article entitled Recurrent erythema migrans despite extended antibiotic treatment with minocycline in a patient with persisting Borrelia burgdorferi infection in the Journal of the American Academy of Dermatology, 28(2 Pt 2):312-4. The title says it all: Even persisting Borrelia burgdorferi infections can occur, with manifestations as odd as a recurrent bulls-eye rash (erythema migrans). Or as Dr. Halperin wrote in Neurology in 1992 ((42):43-50), "In many instances continued infection appears to be essential for symptoms to persist, no matter how small the number of organisms, as antimicrobial therapy is generally followed by clinical improvement." Or as Gerold Stanek (also of IDSA) put it in the British Journal of Dermatology in 2001, "The relapses she repeatedly suffered despite initially successful antibiotic treatment could be related to the observation that Borrelia [the Lyme disease bacteria] may possibly be able to remain dormant in certain tissue compartments, thus escaping bactericidal antibiotic activity" (144(2):387-392). Or as Allan Steere, guru of IDSA on Lyme, told the American Journal of Medicine in 1995 (88:4A-44S-51S), "Similarly [as in tertiary syphilis or tuberculoid leprosy], the antigenic stimulus in Lyme arthritis would appear to be a small number of live spirochetes, demonstrated here by monoclonal antibodies, which may persist in the synovial lesion for years (p.494)". Or as Dr. Steere, wrote in the New England Journal of Medicine (1990 Nov 22; 323(21):1438-44), "The likely reason for relapse is failure to eradicate the spirochete . . . This last article is one of many studies that show continuing symptoms are most likely due to persistence of the spirochete [type of Lyme bacteria]." Indeed, many articles have been published before AND since 1990 demonstrating the possible persistence of Lyme infection in antibiotic-treated patients. These studies have been written by members of the IDSA Lyme "team" and many other reputable scientists. And they are among the 98% of available literature on Lyme not cited in the IDSAs newest treatment guidelines! Who will hold them responsibleFlag
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Name: Cheryl D. Walker on Dec 17, 2007Comments: Thank you for your efforts!Flag
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Name: Douglas O. Walker on Dec 17, 2007Comments:Flag
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Name: Ruth E. Doll on Dec 17, 2007Comments: On behalf of my granddaughter!Flag
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Name: Mark Leavitt on Dec 17, 2007Comments: "It does not require many words to speak the truth" --Chief Joseph of Nez Perce Visit: www.ctlymedisease.org Visit: www.cfidsinsights.comFlag
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Name: Mark Leavitt on Dec 17, 2007Comments: "It does not require many words to speak the truth" --Chief Joseph of Nez Perce Visit: www.ctlymedisease.org Visit: www.cfidsinsights.comFlag
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Name: Iva Wilson on Dec 18, 2007Comments: This disease has contributed to my son losing his life and it has completely turned mine upside down. My son died due to a toxic mix of drugs he was taking to combat his Lyme disease and Morgellons disease. He was only 23 years old. His time was cut short in what should have been the prime years of his life. I have not been able to work for 1 1/2 years, with no income as I am still fighting to receive social security disability and my long-term disability. I searched for an answer to my illness or fifteen years! I am now financially destitute. All savings and retirement income is gone. I was making $100,000 a year less than two years ago!Flag
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Name: Anthony Rinaldi on Dec 18, 2007Comments: Please look into the biological warfare program tha existed post WWI until several years ago. There is much evidence that ticks were injected with many different bacteria, viruses, etc. I have been diagnosed with a form of ALS, my wife has had neurological Lyme for many years with insurmounable suffering and my daughter was treated with antibiotics for five years and finally was able to lead a normal life. This is the most pressing issues facing the U.S. today. We need help! There are millions of families just like us.Flag
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Name: Mabel Maynard on Dec 18, 2007Comments: I was bitten 1976, classic bull's eye rash, testing at that time inconclusive. prescribed 27 aspirin per day. Relasped 1986 standard of care at time 10 days antibiotic & 1996 2 months antibiotic. 2004 thought having stroke, wasn't fuzzy head, tingling, numbness in right ear & face goes to back of head. Positive results have been picked up in test done in NJ, NY & CA but never in CT very strange until I found out that CT on test for one of the 100 + Lyme bacterium. If you don't look you won't find. for 20 weeks I was treated with IV antibiotic and was having results. Dr. retired so treatment discontinued but he said I should continue treatment. Other Drs. have said to get Lyme treated abut no one can give you a name to get treatment. This is not good. Drs. are not even treating symptoms anymore. It appears taht certain factions consider them selves GODS. How has medicine progressed this far if not for people on the edge who have explored and are not afraid to go against the conventional thoughts of the day.Flag
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Name: Margie OBrien on Dec 18, 2007Comments: Lyme disease killed my sister. I am struggling with it , for 17 years. We need a full scientific infestigation into the real affects of Lyme and other tick borne diseases on the human body.Flag
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Name: Anonymous on Dec 18, 2007Comments:Flag
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Name: Chad Mitchell on Dec 18, 2007Comments:Flag
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Name: Linda on Dec 18, 2007Comments:Flag
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Name: Veronica McClure on Dec 18, 2007Comments: This is a silent epidemic that needs to be taken seriously since it is compromising immune systems and fostering chronic illnesses, as well as increased medical expenses and other financial trauma to families already struggling. Please take it seriously.Flag