Thanks for your support of Lyme disease sufferers (LDS)!
I have bookmarked your page and will be very interested in what happens tomorrow - Jan 19.
Joe & Betty(LDS) LeBlanc Amherst, VA email - Rowdeegpsy@aol.com
James Linn. Sent you some e-mail. Good job. I've grown use to being found by hawkers of herbal remedies and other cons. I apologize if I came on strong. Sounds like you're doing good hard work. I pray God is behind you. Will see if I can attend the demonstration...I've been needing to vent some serious frustration. I never have liked this Steere asshole. His papers were always bullshit and any idiot could see he was biased for some reason. Are we required to behave orderily at the demonstration or can we push the legal envelope? -- James <>< <>< <>< <>< <>< <>< <><
I Live in Northern California. Lyme Disease has taken my carrer, and a lot of friends who did not believe I was really ill. It is really hard to keep your job, your temper and your friends. I am lucky, I have a loving family. Some people are not so lucky. I may never have the same earning potential as I had before Lyme. I just hope for a day without pain. That is all I want. I also hope to return to work, at least part time. I have not worked in over a year now. It took me 8 months and 5 Doctors, of ASKING for a Lyme Disease test, before I found a Doctor who would test for it. My Doctor is knowledgable in Lyme. But he is very conservative, I may never regain my life fully. I think he is afraid of the overdiagnosis issue, he may fear his license. I fear that I may never work as an accountant again. I worked so hard to get to where I was at, now it is gone, but the Lyme is not. This is senseless, to let people suffer, families suffer, and carreers suffer, over a political issue, that has a known treatment!!!!! So, as to not to draw attention to my Doctor, I will not be able to sign my name to this. We must protect the Lyme Doctors, at all costs!!!! SS
Bravo!
I saw the URL for this page on the newsgroup sci.med.diseases.lyme. Keep up the pressure. Keep telling the truth.
Lynn in St Paul Editor Tick Talk LymeNet North Metro Newsletter
I just finished viewing the videos at this site of the Ventura conference. Patrick Jarvis, you are my hero, thank you so much for giving validity and making such excellent points about the medical profession's denial about Long term or chronic LD. Myrna's story made me cry, I am so pleased that she is no longer bed ridden. Isn't her recovery to this point sufficient enough evidence to prove to the doctors that we must receive antibiotics in order to function??? I have suffered from this disease for over three years now, my tick bite was on my scalp, I became ill even before I found the tick. Although I sought and received immediate treatment, when I continued to complain of increased symptoms my primary physician told me that I no longer had Lyme, I must now have Fibromyalgia and would not dispense further antibiotics. It took me five months to find a doctor who would treat me, he tested me and found I had Lyme, HME & HGE from that single bite. HME & HGE untreated can be fatal, he told me I was lucky to be alive. Believe me, many times up to that point I thought I was dying. Three years later, I am still seeing the same doctor, I have developed three brain lesions, I have peripheral neuropathy, carpal tunnel in both hands, constant burning nerve pain, sleep disorders, and I have failed a neuro-psychiatric exam two years ago. Much more, but I won't bore you with the details. I have been trying to get my insurance to approve and pay for long term IV antibiotics, but since I do not test positive anymore in serology and PCR studies, it is difficult. I thank you and all the others who made this site available and your attempt to protest at the Ventura Conference. I cannot help but believe that now that our doctors are losing their licenses one by one, that protests, letter writing, media contacts by Lyme patients will one day expose the suffering and tragedy that Dr Steere and his cohorts have caused for us all. With great respect and gratitude, Marta McCoy mlmccoy@jersey.net Moderator for Lyme-aid e-mail support group To subscribe send blank email to: Lyme-aid-subscribe@onelist.com
I am a nurse living in Michigan, and I feel Dr. Steere and his group caused me the agony of going to 12 different physicians to try and find out why I was gradually suffering from what I felt was the most devestating flu I had ever encountered. As my muscles began to tire with just a walk across a room, pain and shortness of breath led me to my bed. I could not read due to double vision. I could not sleep. My heart began to race even with no activity. I could no longer work. I had signs and syptoms of an infection. Why did doctor after doctor belive the first test I had for Lyme Disease was a false positive? Why would no doctor try and treat me for Lyme Disease infection? Due to the direct testimony by Dr. Steere, against a bright young doctor who studied and researched the spirochete, Borrelia burgdorferi and began diagnosing and treating Lyme Disease Patients in Michigan, Dr. Steere caused hundreds of patients to be left with no doctor to treat this terrible bacterial infectious disease. I find it inexcusable that the NIH, National Institutes of Health, the CDC, Center for Disease Control, and our Atate Health Departments, are still mandating and promoting years after the fact, that Steere's "theory" that 4 weeks of antibiotic treatment cures LD. What about all the new research that has come out disproving Steere's theories? This spirochetel bacteria takes on differnt forms, hides out in the body, attacks major organs, heart, brain, liver, kidneys, muscle, soft tissue, and bone marrow, as proven by current research. There has also been the astounding discovery that many who have this tick-borne vector disease also may have more then one infectious agent transmitted to them. Mothers can transmit this infection to the fetus, and some little babes are born suffering already with this disease. The bacteria may lay dormant for years, and after the immune system is finally broken down and overwhelmed by the spirochetes and heaven knows what else, people are becoming very ill with disabling chronic problems. Research has also linked B.b with some cancers.
I would like to see the NIH, CDC, the Steere Group sit down with the doctors working in the trenches with their Lyme Disease Patients, and also sit down with Lyme Patients and discuss the flaws in their research and open their tunnel vision to the fact that people do get better on antibiotics or the progression of Lyme Disease is slowed. I want our side heard and the investigations of Chronic Lyme Disease treating physicans stopped. We have suffered long enough. I want the patients voices to be heard. It is inhumane that I cannot receive informed consent on treatment options for my Lyme Disease. It has so affected the medical community across our great land, that doctors are now afraid to treat LD patients for fear of investigation, hearings before medical boards, and suspension of their license. Education of all Health care professionals across the United States, along with the general population should be immediate about this growing World Wide Disease. NOW!! The newest research, diagnosis and treatments should be recognized by those in power to make it happen. If they are not willing to listen to us, the patients and their families, then our tax dollars should not be paying their salaries. Why is the NIH and the CDC withholding information from the American people? And also from the World population regarding the new research and treatments for Lyme Disease? Submitted by; Barbara Fitzmaurice, R.N., Michigan.
I am a nurse living in Michigan, and I feel Dr. Steere and his group caused me the agony of going to 12 different physicians to try and find out why I was gradually suffering from what I felt was the most devestating flu I had ever encountered. As my muscles began to tire with just a walk across a room, pain and shortness of breath led me to my bed. I could not read due to double vision. I could not sleep. My heart began to race even with no activity. I could no longer work. I had signs and syptoms of an infection. Why did doctor after doctor belive the first test I had for Lyme Disease was a false positive? Why would no doctor try and treat me for Lyme Disease infection? Due to the direct testimony by Dr. Steere, against a bright young doctor who studied and researched the spirochete, Borrelia burgdorferi and began diagnosing and treating Lyme Disease Patients in Michigan, Dr. Steere caused hundreds of patients to be left with no doctor to treat this terrible bacterial infectious disease. I find it inexcusable that the NIH, National Institutes of Health, the CDC, Center for Disease Control, and our Atate Health Departments, are still mandating and promoting years after the fact, that Steere's "theory" that 4 weeks of antibiotic treatment cures LD. What about all the new research that has come out disproving Steere's theories? This spirochetel bacteria takes on differnt forms, hides out in the body, attacks major organs, heart, brain, liver, kidneys, muscle, soft tissue, and bone marrow, as proven by current research. There has also been the astounding discovery that many who have this tick-borne vector disease also may have more then one infectious agent transmitted to them. Mothers can transmit this infection to the fetus, and some little babes are born suffering already with this disease. The bacteria may lay dormant for years, and after the immune system is finally broken down and overwhelmed by the spirochetes and heaven knows what else, people are becoming very ill with disabling chronic problems. Research has also linked B.b with some cancers.
I would like to see the NIH, CDC, the Steere Group sit down with the doctors working in the trenches with their Lyme Disease Patients, and also sit down with Lyme Patients and discuss the flaws in their research and open their tunnel vision to the fact that people do get better on antibiotics or the progression of Lyme Disease is slowed. I want our side heard and the investigations of Chronic Lyme Disease treating physicans stopped. We have suffered long enough. I want the patients voices to be heard. It is inhumane that I cannot receive informed consent on treatment options for my Lyme Disease. It has so affected the medical community across our great land, that doctors are now afraid to treat LD patients for fear of investigation, hearings before medical boards, and suspension of their license. Education of all Health care professionals across the United States, along with the general population should be immediate about this growing World Wide Disease. NOW!! The newest research, diagnosis and treatments should be recognized by those in power to make it happen. If they are not willing to listen to us, the patients and their families, then our tax dollars should not be paying their salaries. Why is the NIH and the CDC withholding information from the American people? And also from the World population regarding the new research and treatments for Lyme Disease? Submitted by; Barbara Fitzmaurice, R.N., Michigan.
I have had undiagnosed lyme disease for 25 years, I am 43 now and was diagnosed last month. Both of my children have multiple tick borne infections including lyme disease. They went undiagnosed and untreated for more than 1/2 their lives also with devastating consequences. We sought help, we went to over 2 dozen doctors, but the doctors we saw had misinformation about lyme disease from Steere's research and treatment protocol. We have suffered horrendously as a result of the wrong, powerful position of Dr. A. Steere which the CDC and NIH have used as a protocol for physicians in treating and diagnosing this disease. Kay Lyon Massachusetts b10g7@mediaone.net
very well done keep up the spirit and we will win in the end timothy j rowett nj
Dear Patrick & Scott,
May YHVH bless you. What you are doing is a righteous thing. I left comments before that were lame & I apologize. I accept your rebuke. I pray my statements made out of frustration will be forgiven. I have received so much e-mail from individuals hawking alternative rememdies for Lyme Disease that I've grown weary and got my cart in front of my horse. Keep me updated and I will do anything within my power to help this cause. I have had Lyme's for 40 years and cannot obtain proper medical treatment but continue searching. The enabling grace of God has kept me alive for a reason and it is for to fight and to fight hard. You both did an excellent job of verbalizing and recording your attempt to confront Dr. Steere. His appearance on the West Coast has undoubtedly injured our cause. I had a return appointment on 1/25/00 scheduled with the physician who diagnosed me in '92 and it was abruptly and permanantly cancelled earlier that morning. I was told he was accepting no new patients and that would soon be retiring. I have no doubt that the witch hunt has come to the West Coast. Whether it's the neurological impact of the Lyme's or my own Type A personality, I feel myself drifting towards a very militant attitude. I pray God gives me wisdom and guidance and prolongs my patience. I pray our Father's touch upon all good doctors and Lyme Victims. Keep me in mind if plans are made for further advocacy and campaigning. I want to be involved and no position is too low for me, no request would be beneath me. My intention all these years has been to take names and kick dragon tail. Continue to walk with dignity and trust in our Heavenly Father. He knows what He's doing and the Serpent's head shall be crushed for it was written long before Dr. Steere joined himself to the Synagogue of Satan. Give all the brethren and victims my salutations of love and continuing prayers. Godspeed Patrick, Godspeed Scott. Praising Yashua always -- James Linn, the lowest of the low in God's Kingdom.
Jeannine Der Bedrosian, suffered with Lyme Disease 3 years before any doctor would even test for it - and then only by accident. Severe "moderate to severe" neuorological/brain damage, white matter in brain similar to Alzheimer's, lesions, ministroke, right now can not adequately care for my 4 children.
I advocate anyone who is able to gather up strength to object and protest against the "Overdiagnosed/Overtreated" philosophy and to be politically active against those who persecute/prosecute caring Lyme Disease physicians!
Power to Lyme People Everywhere! We can do what is needed to change the diagnosis/treatment picture TOGETHER.
Dr. Steere and others have to be stopped. I've been suffering for 2 1/2 years. Like thousands of others I was misdiagnosed than underdiagnosed and undertreated before finding a good lyme doctor in New York. My l4 year old daughter is also being treated for lyme. In Westchester county, NY Dr's like Thomas Rush and his group are notorious for not taking lyme seriously. He told me I didnt have lyme but a psychiartic problem. I went to him for another opinion because I never felt right after antibiotic treatment and was sure I still had Lyme disease. I essentially walked around with encephilitus for a year going from doctor to doctor until I finally found one who understands this disease. My life has stopped, I haven't worked in two years and I suffer severe neurological problems. Am currently undergoing IV treatment and am keeping my fingers crossed that some day I can return to a normal life. We must keep up the pressure and stop these horrible doctors!
Thank you for helping to get the word out, especially in California. I have been disabled with Lyme Disease for well over ten years now. Without doctors like Dr.Burrascano, we would be in a worse state than we are. I appreciate all the work that has gone into this site and hope we can get some more doctors to realize the truth about this disease. Diana
An incredible presentation of this material.Thank you so much for making this available. I have had Lyme Disease since 1989, was diagnosed in 1991, am presently on disability. Had I been diagnosed and treated aggressively perhaps I would be back at work.
This video really is a wake up call to help educate doctors and patients to do all we can to preserve our rights to treatment and for them to be able to provide it unencumbered by persecution and "censorship". Thank you so very very much.
Joan O'Brien New York State
Karen Yuhas
Good research.
I'll be looking for more.
Dear Scott and Patrick...you both did a bang-up job here. Not only have you gotten an important message out, but it is a privilege to get to see actual video coverage from the event. I'm in the central Midwest so not much chance for rallies here, at least concerning the the major academic players that are a part of the problem. Lyme disease "doesn't exist" here so why should the come. It doesn't matter at least 3 young people (20-30s) died from complications of the disease across the state line last year, one of whom was one of my closeset friends.
Otherwise, the extent of the problems politically and endemically with LD in CA really needs attention and you along with the others have made a great start. I just had a cable modem installed which makes viewing the videos extra nice :-) But the video worked well on my regular modem, and Real Player is easy to install, so I think many will be able to view this important piece. I will add a link to your site soon. Donna lyme411@yahoo.com Lyme Disease Information Resource http://www.x-l.net/Lyme/
I'm writing this from Indiana to say: job well done. Look forward to hearing more. CJ
From one survivor to another:::: I just want to commend Patrick Jarvis,for his heroic endeavors to educate the masses about this nightmare called Lyme Disease. I know this disease keeps us housebound and bedridden, and brings us grief, for the loss of our previous 'lives',let alone the pain, misery, and misunderstanding...even among our peers and family! So, finally, there are good doctors, willing to go the extra mile for us 'lymies', willing to treat us PROPERLY, with Correct Rx's, and other modalities that work for Lyme, and they are the ones being prosecuted and barred from treating us!!!! It doesn't take a genius to figure out there are other issues at work here. *(Someone has an agenda here, and it isn't us or the 'Good informed Md's)! As in Patrick J's case and mine, and many thousands and thousands more just like us...... We were professional people, living full lives, when we were struck down by Lyme....WHY would we want to live below the poverty line now...racked with pain, impaired bodily functions, and constant life-threatening systemic bacterial infections???? NO ONE WOULD !!!!!!!!! I could go on and on about the losses...but I think you get the picture. All we are asking for is to let Lyme-friendly Lyme-literate MD's help us. Untie thier hands. Let them practice medicine tho help the "LOST ".... *yes, the new studies, though slanted , say, that with short term abx treatments. Lyme will dissapate..BUT WHAT ABOUT US.....THE ONES WHO HAVE BEEN MIS-DIAGNOSED/NON-DIAGNOSED FOR 10-15 YRS!!! OUR INSIDES PERMANENTLY DAMAGED...OUR MINDS AND NERVOUS SYSYTEMS THRASHED FROM YEARS OF DISEASE. THE ONES WHO HAVE , MAYBE ONE (1) GOOD DAY PER WEEK! ~~~~~~~~~~~~~~~~~~~~~~~ SOMETHING HAS GOT TO CHANGE. I pray for the day when we can get the proper treatments we need, from the Lyme doctor we choose, and have the meds and the Hyperbarics paid for just as a diabetics insulin is never in question! P E A C E ! M.Gabrielle
Patrick - good job. I felt you really put our problem with fighting Lyme Disease in perspective. I do my best, living with Lyme to attend rallies, write letters, etc., and always find it very ironic, that we have to fight not only LD, but for the right to be treated when we are at our very weakest due to the multisystematic symptoms that Lyme causes. I have been diagnosed for over a year now, but was misdiagnosed, like so many, for six years, making it very hard to treat. I try to explain to people, that on a good day (sometimes only a good hour), the worse we may feel is like we have the flu. Can you imagine having the flu everyday? I wonder if Dr. Steere can? Of course, he must not. I had a chance to speak to him at the NIH rally, he did not have answers for the many people there suffering with Lyme. Patrick, you asked him what he is afraid of? The answer is, his career and retirement. He has made his career and lots of money with his "Astute" observations and protocol on Lyme, at our expense. If he were to admit he is wrong, he would have a lot to lose. Thank you for your excellent explainations on what we Lymies and our good doctor's are going through. Keep up the good work. We must be heard, and I believe in the end, we will win, but what we all want most, is to get our health back, and our normal lives. I pray daily for good health for all of us. V. Ferraro, Maryland
Patrick - great job! I felt you really put our problem with fighting Lyme Disease in perspective. I do my best, living with Lyme to attend rallies, write letters, etc., and always find it very ironic, that we have to fight not only LD, but for the right to be treated when we are at our very weakest due to the multisystematic symptoms that Lyme causes. I have been diagnosed for over a year now, but was misdiagnosed, like so many, for six years, making it very hard to treat. I try to explain to people, that on a good day (sometimes only a good hour), the worse we may feel is like we have the flu. Can you imagine having the flu everyday? I wonder if Dr. Steere can? Of course, he must not. I had a chance to speak to him at the NIH rally, he did not have answers for the many people there suffering with Lyme. Patrick, you asked him what he is afraid of? The answer is, his career and retirement. He has made his career and lots of money with his "Astute" observations and protocol on Lyme, at our expense. If he were to admit he is wrong, he would have a lot to lose. Thank you for your excellent explainations on what we Lymies and our good doctor's are going through. Keep up the good work. We must be heard, and I believe in the end, we will win, but what we all want most, is to get our health back, and our normal lives. I pray daily for good health for all of us. V. Ferraro, Maryland
Thank you for sharing this story about this disease. I am adding this sufferer to my prayer list and will ask others to add it in a prayer of agreement. I'm excited as I so enjoy witnessing GOD doing great things.Lyme disease is no big deal for GOD.A GOD who created all of creation-well a few cells are no big deal.He just said "according to our faith be it unto us" and "in the name of Jesus." I don't just believe I KNOW! After a near death experience,GOD brought me a non-believer up to heaven by his AMAZING GRACE!!!! to tell and show me the truth.I have since been healed of blindness,paralysis,asthma,daily headaches -endless.I know his power.GOD's even bigger than death.He answered my prayer on a girl with aids and doctors at U.C.L.A. are still amazed.It only happened when she accepted the truth of Isaiah 53:5 "with his stripes we are healed." It was done at calvary.We're already healed.We only need to act in FAITH on the truth.If we don't have it,we ask for that too.GOD has EVERYTHING.EVERYTHING!!!!!!!!!!!!!! A true witness Among the least of all, noba Q
I am so thankful to the many of you who have left encouraging statements to me. I would also like to point out that Scott Thomas is quite the man; he doesn't even have Lyme Disease, but has worked hard to help us get the word out. Keep up the fight! We mourn the loss of activists Geri Titelbaum and Kathy Calvert (sp?) I hope I can do my part to bring some sanity to the process. Meanwhile, look at poor Michael J. Fox. He appeared on Letterman saying he had a bad case of Lyme Disease. Then, someone obviously came along and told him he didn't have Lyme Disease "any more", but PARKINSON'S. Then they did BRAIN SURGERY on him. No luck; he had to retire several weeks ago. I sure wish we could get the facts to him. Please join us in prayer for an end to any deception or just ignorance; we are so sick, and I wonder if the arrogant ones will keep fiddling until half of California has Lyme Disease.
Am actively and aggressively looking for West Coast Activist connections to join the fight against the concerted medical community efforts to suppress lyme treatment. Have been sick since mid '96, just found out Aug. 2001 that it's lyme/babesiaWA1, thats how effective their efforts have been on me. Target has been confirmed, now collecting range and bearing data.
A recent Lyme sufferer, my response was dramatic to the doxycycline. I'm on day 7 of the 10 days my GP prescribed, and after intensive reading on the internet I'm firmly convinced I need much more treatment but I can't find a dr. in the SF Bay Area. Please help me find someone who will correctly treat this disease before I'm disabled... . . HELP!
I am looking to find a good doctor in Santa cruz who treats Lymes Diesease it has disabled me any info would be apprectiatd David Stricker in S.F. is no longer taking new patients. any info appreciated Melissa Lafkas melrose22y@yahoo.com
My name is Teresa, I am an advanced practice RN with 25 yrs of healthcare experience. The Lyme disease I contracted was finally treated correctly by Dr Burrascano in 1997. I thought I was fine, but starting in 2002, I started having severe motor muscle disfunction in my legs. Despite months of IV antibiotics, the neuropathies have advanced, and I am now chairbound and on disability. It has apparently attacked the majority of my cervical spine, and even the previously effective regime has not helped. I receive IVIgG at present to help my immune system, but despite many medical consults, including U. of Chicago and Mayo Clinic, most practitioners have been unsure of what to do. It is clearly not MS, so immunosuppressive therapies are out.Does anyone know of any similar cases to mine? Dr Katz of CT told me only 5% of the Lyme pts he has seen have gotten this bad. Any comments or suggestions would be welcome!