LYMEPOLICYWONK: Speak Up Now! IDSA Lyme Guidelines And Patient Viewpoints Survey Ends January 1. . .
Since we launched this survey in early October, we have drawn over 4,800 responses. The survey will end on January 1 so I encourage those of you who have not yet responded to take the time to do so. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. This survey aims to find out what you think is important about treatment options, choices, risks and benefits. Respond to the survey and remind the IDSA that patient values are central to treatment guidelines!
To participate in this survey, click here.
Your responses will be treated with confidence and at all times data will presented in such a way that your identity cannot be connected with specific published data. The survey should take 5-8 minutes. Note that once you start the survey, you will need to fully complete it. (You cannot save it and return to it later.)
In 2009 prior to the IDSA hearing, we wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States. The results of that survey were published in Health Policy in a study by Johnson, Aylward and Stricker and summarized in another blog post of mine. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org (formerly CALDA). Contact her at lbjohnson@lymedisease.org.
A change has to be made. Too many people are suffering including children. I live in Ma and we are infected with ticks and lyme disease everywhere but are blood results tests mostly come back normal and we are told that our symptoms are in our head and told to seek counsling. I am curantly house bound with debilitating symptoms. my life as I knew it, is gone.
Why should any of us want to keep our name and contact info confidential. Seems the survey would carry more weight if our names were included. We do not have leprosy or VD. If this is going to the IDSA they may want to contact some of us.
We are being missled about Infectious Mycoplasmas and their use in conjunction as a co-infection of Lymes disease. This coinfection leads to further morbidity and virtually NO doctors understand pathogenic Mycoplasmas. Bartonella, Babesia, HGE AND Mycoplasmas make Lymes EXTREMELY hard to diagnose and treat.
To top that off, how can tests that look for antibodies be utilized when research has PROVEN that you need to look for the DNA of the bacteria(s). The surface protein of Borrelia Burgdorferi changes (pleomorphism) constantly so the antibodies keep changing to try to find an ability to attack this bacteria. A Antibody test is innefective in this manner. Research Dr Lida Mattman PHD Immunology, Virology, Yale, Nobel Prize nominee and her use of the Q-RiBb test and see how she was able to get a 100% confirmation of the DNA of the bacteria. That's the Gold Standard, but it was dissmissed as being TOO accurate. We are being lied to about this disease and its effects. The Gov't KNOWS there is a bacteria or numerous bacteria that are extremely hard to treat and consequently Pharma industries are concentrating on making symptom reducing drugs to compensate while we suffer and know it's ONE thing causing our symptoms. It's a PROVEN fact.
If ALS, MS, Lupus and other AI illness sufferers get intraveinous Rocephin treatment, they get better. And the ALS patients actually return to normal lives. That PROVES this is bacterial in nature. We are being suckered into spending trillions on drugs when all this could have been avoided by a dosage of Doxycycline in the first few days of symptoms.
Please revise you guidelines before more people die….It's way past time
I wish there was a section in the survey for additional Comments. The Daycare down the street was infested with Ticks. What about the Innocent Children & the Parents that try their Hardest to take care of these Children, being so sick. This is a terrible disease. I can't not believe that Children & People Cannot Get the Proper Care needed, proper testing. That There Are Guidelines We have To Follow For Our Health. If I was Treated Properly over the past 2yrs. I would not have lost my Job, my Life & would not Have to go Through This Disabling Pain. All the Money I wasted seeing doctors & the Insurance Companies money wasted on so many tests. MRI, EMG, Physical Therapy. This is OUTRages. These Guidelines Need to Be Changed.ASAP . Before we lose more lives to this Lyme Disease, it's spreading infections that are also not detected in Blood Test. Come On. How Long are we Going to Waste Money & LIfes & Be controlled By Guidelines. I always believed that Guidelines were to Protect the People. We The People Demand the Changes to Save OUR Lives & OUR Children Lives.
I wish there was a place to leave a comment on this survey. The Daycare down the street from me was infested with ticks last spring. Guidelines need to be changed to not only save lives but to give accurate testing (where People get to choose)& insurance companies should have to pay for accurate testing. Proper Treatment, to kill the Lyme & the infections the lovely ticks are giving us. Research Lyme & all the infections & coinfections the ticks are infecting us with. We the People Should be Able to comment on the changes & be sure the Guidelines are for The People. Not just for Doctors & Insurance Companies.
IDSA standard DOXY solved my acute LD symptoms but triggered more than 15 years of recurring infections. Requiring three surgeries and inducing chronic LD symptoms that forced me out of employment and early retirement for a total of 6 years.
Chronic LD is real as I am now under ILADS protocol almost clear of all symptoms.
Anonymity is an essential part of survey validity. It helps to ensure that people feel comfortable in talking about personal views. If you feel you want to share your name with IDSA, feel free to write them directly, but please do not assume that others feel the same way. In our state, the medical institution where IDSA has the most influence has harassed both physicians and patients, some of whom have been emotionally traumatized by the experience. We are working on some initiatives to change that, which are bearing fruit, but until then, anonymity in a survey such as this is far more likely to result in the true range of experiences people have.
THERE IS DENIAL AND WILLFUL CONCEALMENT OF THE TRUTH. PATIENTS ARE BEING HARMED AND INJURED!!! HOW MANY MORE PEOPLE HAVE TO SUFFER AND LIVE A REDUCED QUALITY OF LIFE WITH THESE INFECTIONS? YOU MAY ONLY BE AN INFECTED TICK BITE AWAY FROM YOUR OWN REALITY!!! PATIENTS REQUIRE- NO DEMAND- INFORMED CONSENT. IT IS PART OF THE PATIENT BILL OF RIGHTS, AND THIS IS BEING VIOLATED. THERE IS A DUTY OWED, THERE IS A BREACH OF DUTY, THERE IS INJURY, AND THERE IS CAUSE RELATED TO THE ABOVE STATED. THIS SETS THE STAGE FOR MALPRACTICE. THERE ARE TWO STANDARDS OF CARE FOR TREATING LYME DISEASE. WE HAVE A RIGHT TO KNOW AND MAKE INFORMED DECISIONS ABOUT OUR HEALTH AND WELL-BEING. THIS IS OUR MIND, BODY AND SPIRIT- NOT YOURS!!!!!! Linda Olley, R.N, Mis-diagnosed for 20 years with history of over 100 tick infestations- currently under treatment. Leader of the Harrisburg Area Lyme Disease Support Group,and Regional Leader for Lyme Action PA.
Lyme disease is not taken as seriously by accepted medicine as it should be. Only real truth works. Many people, including me, are suffering. I have had to treat myself by what I learn on the net. Because many doctors do not understand Lyme, I am afraid to use conventional medicine at all. A doctor would not be able to take, what I am doing for Lyme, into consideration when treating me for anything else as well.
Thanks, Lorraine!
My lymes exacerbated the stress of my mothers death which in turn exacerbated my moods and anxiety and behaviors. I lost my job at the College over it. Anytime I get any infection at all, I have the added danger of the Lymes. Prevention of Lymes is too late for me, but we need more information on what we can do to prevent the onset of infection, what therapies might help, what supplements work, How can we reduce stress.
MY comment is when you tell your Dr you were bit by something they don't believe you and treated me for sinus infection and you get sicker and sicker and I still don't feel good
I have lost So Much of my Life, due to Lyme,Babesiosis,Bartonella (if any more infections, I don't think I even want to know, LOL)… It's time for a Wake Up Call; time for doctors to get a bit more inquisitive,interested in their patients who suffer "weird" symptoms that "make no sense to" them, & learn how to better Serve us, yet "do no harm!" They also need to be in-the-know re: the deleterious effects of water-damaged homes & its resultant molds, which further strip us down in our immunity!
Is it me or were some of the survey questions hard to understand?
I think the IDSA is as useless as TITS on a boar Hog the same as the USDA ….we have let them slide way to long they need to be shutdown ….tom
I filled the survey. It would be helpfull if there was a comment section as I am the mother and not the one affected by Lyme. Hope it will contribute to improving the guidelines. My 11 y/o son has been affected for 4 years now. His pediatricians were ignoring his complaints for 3 years. Still thought his blodd work was negative although the western blot was positive without any doubt. It leads to few results to navigate the allopathic medical system with such polarized approaches. Also, my insurance won't pay for his treatment.
IDSA and CDC has blood on their hands. They have no authority to change any guidelines. Why do we even give them the authority to change anything? These incompetent idiots need to be put away. They should be arrested and put on trial for manslaughter of thousands of people who have died from this disease because of their asinine policies. They should lose their licenses to practice and be sued for millions of dollars in malpractice for the suffering of thousands of children and adults who's lives have been forever changed because of their arrogant policies. It will only happen if we the people band together and make it happen.
I fully agree–too many real chidren and adults are suffering, losing IQ and careers and basically are trundled from one specialist to another without their receiving effective medical treatment. Time to form a group and have a class action suit against the policymakers at IDSA who do have information about lyme disease and are sitting on their hands.
I filled out the survey with hopes that the conference in October has maybe impacted the perpetual lie that lyme disease in chronic form doesn't exist. I continue to be amazed by the fact that this bacteria has been well recognized since the 80's and still no move forward. I really would like to know the reason for why the stifling attitude remains. Its like being in the movie Ground Hog everyday. For every study that comes out that says chronic lyme is real and the bacteria is still viable after short treatment of antibiotics there is a contradicting statement that says it doesn't.
Contemplating the magnitude of the disease (ie many countries affected)why is it that the countries are not working together to figure this out. It makes no sense.
CDC Canada follows the IDSA guidelines. Thousands of us are sick. Thousands of us need help. Thousands of us wished we could have completed this survey. Thousands of us are waiting and watching. We ALL say Thankyou for the lives you are helping to save !!
Please let doctors treat patients with lyme, or lyme sympoms, with antibiotics. It can only help them. Too many people are going without antibiotics that would be cured by them!
I am so taken back by the amount of Doctors in CT who are still in denial of the treatment Lyme!! I wasn't diagnosed or treated correctly for 5 years during which time I had giving birth to our son. It was his pediatrician Dr. Charles Jones who asked me if I was ever bitten by a tick. He drew my blood and sent it to the proper labs two weeks later I was told, not only did I have Lyme but many co-infections as well. Our son was tested and sure enough he was born with Lyme. It is so heart breaking to have witness the daily struggles he has had to endure the past 13 years. No child should have to work so hard just to do everyday activities. This could have and SHOULD have all been avoided if I was diagnosed & treated properly!!
In MT, currently being falsely-accused of a FELONY w/ penalty of $10,000 and Involuntary Commitment in the Montana State Mental Hospital for false-fabricated Munchausen's by proxy, Delusional-Somatic type "None of her physical symptoms nor the physical symptoms of her two minor children have ever been substantiated by any physicians. She is a harm to herself, her children, and others. She is "gravely disabled" denied our individual and constitutional rights, privileges, accommodations, benefits and immunities under The Americans With Disabilities Act (ADA) of 1973 (accommodations), 1990 (local and state entities and activities) and, as Amended 2008 for further protection by President Obama (for "as regarded" related medical conditions known to recur and/or in remission) under Title I, II, III, V Section 504 federal law "unconstitutionally held hostage under state custody, w/ "unconstitutional" taking of: life, liberty and property under (ADA)federal law – (w/ NO immunity by the State!)
IN NEED of NATIONAL ATTENTION/NEWS!
Bitten 4 years ago. Found a caring Lyme-Literate Doctor last May.I have Bartonella also. Antibiotics prescribed now for 16months.. Slowly recovering…meeting numerous infected people here in Fredericton,New Brunswick…Blood Tests are a joke.
I was refused treatment and not even allow to the Dr.s office when I first got Lyme Disease back in 2000.Later when more symptoms presented they put me on antidepressants.Then I had Lyme Disease and had to take MYSELF off of the antidepressants!thankful physically I was in top shape. The disease went on for 3 months before the neglectful Dr. sent my records 10 miles to new Dr at my request.While even chronically sick with the disease I could have WALKED the records that far in faster time.I educated myself on the disease whenever I could crawl to the computer while waiting for records to transfer. I got diagnosed by my new Nurse Practitioner and asked to go to a Infectious Disease specialist close by. Was lucky a well known Dr. who did pioneer research on Lyme started this ID practice and that is why I chose them. I insisted on Rocephrin intravenously and they obliged. I feel I am cured even though through the years before symptoms presented I had at least 8 bullseyes!!! That was before public service announcements on Lyme were on T.V and Dr and I thought that I was just allergic to ticks.
I had no support system at all.But I persevered!!I am in good health now for the most part and can run 4 miles at the gym. Good luck to everyone who has this disease. I am one of the few who have triumphed over it .
Congratulations! I too was up for only an hour or two at a time during the day suffering tertiary lyme for years with no hope of my health progressing in any positive direction, just one bout of pneumonia or “flu” after another.
Thank heavens for Dr Burrascanno and his website which I stumbled upon during those desperate online searches going a few minutes at a time, getting out of bed to go sit before my computer. I arrived at the diagnosis based on past symptoms out of my medical record! My doctor was going to give me more instructions for “rest and fluids” and cortisone for the skin rash, which was actually a tertiary lyme rash. At that point symptoms were neurologic and no longer seemed to exactly fit the picture of “flu” or “walking pneumonia” It took 5 years of IV and antibiotic treatments followed by holistic treatments I am still pursuing and I am only 75 or 80% better but at least the greying out of vision and hearing reversed and intellectual capacity and confidence are starting to return.
I am angry at the system of medical ignorance that has taken my life away for 25+ years. The treatment after one year of trying to kill Babesia has been dreadful but hopefully that parasite will be gone soon. Then we go to Bartenella and when that is erradicated we go after Lyme. Sounds like another year of my life and treatment but hopefully a life. I am already in my Golden Years so I would like to be well enough to enjoy them soon. We must find a way to bring more awareness with someone very famous like Elizabeth Taylor did for Aids….thank you
A SOME ONE SAID,BLOOD TEST ARE A JOKE HERE IN CONNECTICUT. EVEN IF A TEST COMES BACK POSITIVE YOU CAN ONLY BE PRESCRIBED 2 WEEKS AT MOST ANTIBIOTICS. BUT MOST OF THE TIME THE TEST COMES BACK NEGATIVE. YOU HAVE THE SYMPTOMS AND ARE SUFFERING, BUT NO FURTHER TESTING IS DONE. IT IS A SHAME THAT WE HAVE TO SUFFER BECAUSE OF LACK OF INFORMATION REGARDING LYMES. WISE UP DOCTORS SO YOU CAN TRULY HELP YOUR PATIENTS.
i was needlessly ill and felt like I was dying cause I was for 5 years. To get diagnosed & treatment was a battle all on it's own. It was a fight, an expensive one. The ISDA is hiding something in connection with this disease. It is so simple to treat early on. What's their problem? Denial? Conflict of interest. If I didn't fight to have my treatment, ABROAD, i would be in a home having my diapers changed. So, that's what they prefer? Sorry, this chick thinks for herself. I'm better now. I run, I work, I volunteer. I have my life back. Don't put so much faith in your old methods of testing. You may as well stubbornly stick with the theory that the earth is flat. Face it, it's just ridiculous. I am constantly writing my story on these internet sites and they get no one no where. I hate you guys.
I've had Lyme disease and another co-infection since 1995. Noone knew what was wrong with me and made my husband and daughters beleive that I was pretending I was sick. Then on my own protocol, my husband, my sister who lives in Pa figured out what was wrong with me. There was no good reason why I had to suffer like I did all those years ago, because the "mainstream medical community" didn't do their job to figure out what I was dealing with. These men and women who study medicine and claim to be doctors had better return to school and figure it out. Then we have to deal with IDSA and their ridiculous guidelines, all I know is someday when you leave this earth, YOU are going to have to answer for this, why you let so many people down, why you didn't tell them the truth about Lyme disease and then do something about it. There's no reason on earth or excuse for how Lyme victims and their families are mistreated, denied, prejudiced against for having Lyme disease.For goodness sake, LYME DISEASE is as real a disease as Aids, Cancer, MS, etc, you don't seem to mind how much money and research goes for those diseases BUT when Lyme comes up, the LYING starts! May God forgive you for what you are not doing to help all of us who suffer and have suffered needlessly at the hands of IDSA!
I have been treating LD for 5 years after a positive Western Blot and years of varying symptoms. So far, even though I have insurance, I am still out of pocket $75,000 and there is no end in sight. Some of the treatment my doctor would like to try are too expensive and not covered, so I end up trying lots of alternatives and running up my bills even further. If doctors could get on board with what is and what isn't lyme, and decide to treat patients who don't feel well, we would make progress. At this point, after throwing $75K away on treatments, I may have to stop treatment altogether because I am still unwell.
i've had chronic lyme 42 yrs; 35 yrs. MISDIAGNOSED by 40-50 drs. UNACCEPTABLE!
NONE of those drs. ever mentioned lyme disease, had i seen a tick or EMBEDDED tick, a BULLS-EYE or any type of rash? NEVER!
what saddens me the most is this:
not only are we told over/over "IT'S ALL IN YOUR HEAD" and shipped off to the psychologists/psychiatrists, we are DESERTED by family/friends who think we've gone CRAZY!
when we find good LLMDS who treat ILADS, we submit our bills to our health insurance companies expecting them to pay THEIR FAIR SHARES!
NOPE! IT'S CALLED "EXPERIMENTAL" THERAPY AND DENIED OVER/OVER! HOGWASH!
my husband and i both on medicare with me being on DISABLED medicare, currently pay $1212.75/MONTH!
******************************
many of my close online friends have lost:
their jobs, HEALTH INSURANCE, spouses/SO and child custody, family/friends, their homes, bankruptcy, and the ultimate sacrifice …
THEY COMMITTED SUICIDE TO END THEIR 24/7 PAIN since they had nothing to live for anymore!
idsa guidelines need to be changed IMMEDIATELY; IOM found enough discrepancies during the testimonies/EVIDENCE PROVIDED including PJ LANGHOFF'S, THE BAKER'S DOZEN, LUNATIC FRINGE, JUNK SCIENCE book.
the guidelines need to be changed to:
long term antibiotics, supplements, and alternative therapies are permissible under the direction of ILADS DRS!
i could go on and on; CHANGE NEEDS TO HAPPEN DURING THE NEXT GUIDELINES SUBMITTED! NO EXCUSES IDSA DOCS! NONE!
bettyg, iowa lyme activist
http://www.mdjunction.com lyme board HEAD leader,
llmd coordinator .. i've SAVED over 50 -60,000 LIVES in last 7 years with my sending out LLMD names/info and my welcome letter full of ACCURATE links/info! THAT'S WHAT I'M PROUD OF!
Due to the current IDSA Regulations, I have written many sympathy cards to the families who lost their loved ones. THE IDSA needs to consider those who are suffering due to their arrogance.
Why does the IDSA refuse to learn about chronic Lyme? Do they have something against chronic Lyme sufferers? Why do they ignore the facts and continue with their own madeup imagined Lyme treatment guidelines, which are meant to cure nothing but only serves to ease the pain of the insurers.
I'v had Lyme Borreliosis Complex for 30 years. I went through all the misdiagnosis issues that so many talk about. That went on for 5-6 years after I had had it for 20 years and symptoms were unbearable. Finally I went to a doctor who diagnosed me clinically and put me on oral antibiotics. This played havoc on my disease, I herxed much of the time. Unfortunately there was no immune building aspect to the program, so a year or so after treatment ended ( that's 5 years of orals…), it came back w/ a vengeance. That's when I was bit two more times, and was treated by ISDA protocol. 3 days tetracycline. Once I went to the emergency room and they gave me ONE doxycicline and said I would be fine. I just had to set him straight. I was again sent to all the doctors who misdiagnosed me again. Bear in mind I have kept a journal of every day of my disease for 10 years so it is all recorded. Thank goodness IGenex came along! Praise God! My doctor consented to having a blood sample sent and it came back loaded with positive bands. (past Western Blots came back w/ positive bands, but not enough to satisfy CDC standards) Now there was no question, I was way above CDC standards. This is when I went on a serious quest to find a specialist who would treat me intravenously and build my immune system at the same time. I found one! I am still doing treatment so I cannot give the results, but I can say my body has responded positively, and the immune building supplements have done wonders. I can judge this by the increased hair growth (which I had lost over the years) and my fingernails growing. They never had before. I have more energy, and rarely have bad days. The unbearable pain is gone, so something must be going right! I highly recommend to all "Lymies" to do their research and find a doctor who will treat you on many levels. And treat for all co-infections ticks can transmit. Good Luck, all! Amy Jo
For 20+ yrs I have been fighting along with hundreds like me for the recognition of Lyme Disease and its seriousness to us as people! I know of NO OTHER DISEASE,REPEAT, NO OTHER DISEASE that we as knowledgeable people have had to fight every single day,every single hour to try to get our medical community to say to us "Yes, you have Lyme Disease"!
Why? Why do we have to fight so hard? Why does every single issue have to be taken to our congress as a bill to pass when some of us are dying of this dreadful disease!!
I don't have the answer. I wish I did. After my 20+yrs, you'd think I would but I don't and after fighting bill after bill and sending emails to senators and congressmen,phonecalls to this one and that one, I still don't. But you know what,I'm still going to keep fighting.
Not so much for me anymore because after all this time my body has been ravaged but I want to help prevent someone else from having to go thru what I've put myself and my family thru for all these years.
Could someone tell me the DEADLINE of the Survey? I can't seem to find it. Thanks!
Please revise your stance on Lyme. Too many of us are suffering for no good reason.
i am totally in suicide mode,the pain and suffering is horrible!!!if not for my love of god i would have surely took my life!!!enough is enough idsa is committing a horrific injustice to all that suffer from lyme and they will be held accountable!!!!!!!!!!!
My families life has been destroyed for 5 years. My husband got lymee disease with rash 5 years ago. Dr wouldn't treat without positive lyme test of course the uses less Elisa test came back negative. So no treatment instead maybe 100,000 worth of useless tests diagnosed with Ms, fibro and left one'of the best hospitals in new England saying there is nothing we can do for you after 3 mri`s and 10 specialists.. then I become sick hmmm only transmitted through ticks WRONG!! After my symptoms varied from'his I didn't think lyme so i went through the same BS as him. Surgery for no reason and hope fading.. raising 5 kids and two useless parents all thanks to the idsa. Now two weeks ago my daughter diagnosed because I actually was sick longer than I thought and gave it to my 4 year old daughter through birth and breastfeeding.
I'm sick over my precious daughter having too suffer because of greed.. I have talked to thousands of people and the stories are basically the same. I hear of suicides and the depression you get from this sickness is like no other.
How does the idsa sleep at night knowing they are responsible for so many deaths, ruined lives, pain and suffering like no other and the list goes on.. to millions of people and most people walk around not knowing they have lyme to even try to get help. These people have someone else to answer to when their lives end and I don't think they will be going upstairs for one second but to the very bottom floor of hell.
The chimp that ripped a women's face off had chronic lyme disease. Murder suicides in such high numbers from lyme sufferors. The changes that happen change every aspect about the infected person. This is a living hell and it never ends. Every dime goes to trying to figure out a plan to treat yourself and family.. your life as you know it is over.
The only disease I'm aware of that has a full-time, proactive, adversarial group, (IDSA)to deny it's very existence. They are either nervous that their 'position' on Lyme will result in a massive class-action lawsuit, or something deeply diabolical is in play. After 16 years dancing w/this disease-10 of it undiagnosed-untreated. I lean towards the latter. The IDSA docs told me there is no such thing as Chronic Lyme and there was no Lyme in California.
Please repost the link to the published 2009 Health Policy survey – we cannot find it in your blog archives. Thank you.
It is heartbreaking to read all of your comments! I too have suffered. My grandmother told me to always check for ticks when I went to the bathroom. I remember the day when I took one off. 6 months later I was fatigue, couldnt run, school was very difficult to get through. There have been so many symptoms in these last 37 years. I really am sorry for all of us that have been unjustly denied treatment. My husband is crippled too from this. SOmeone spoke of the doctors who are unjustly treated too. The only way I knew I was sick all these years is because I read the symptom list my husband was going to give to a friend of ours. I pray everyday for this whole thing to get better, I pray for the people, more doctors, congress, more awareness, and more clinics. God Bless you all.
I went undiagnosed with Lyme for two years because, "there isn't any Lyme disease in California." update the tests and get out of the pockets of insurance companies
I apologize for the somewhat Kryptic title. It only allowed me so many characters so I had to be creative.
I have been thinking about this from the first time I found myself on the bathroom floor. My face hovered over the toilet bowl as my body trembled, almost as if I were having a seizure.
I did not have the strength to keep my seven year old son out of the room; so he sat at my folded legs in tears. He cried as he said to me "I don't want you to go back to the hospital, Mommy."
This was my first Herx reaction. Little did I know that as I continued to work full-time, making it through my day-to-day life as a single parent, I would deal with chronic pain and nauseau on a daily basis.
I know that as my doctor and I work together to find the "magic" combination that will kill off the Lyme and the co-infection(s) I will have to suffer through the fact that often the "cure" is as difficult (or worse) than the disease.
When the dose increases or changes the nausea will often get worse. The weakness will be unpredictable. The pain may manifest itself in a new muscle or joint or just become more severe in all the familiar places.
My mind will have no choice but to take me and my emotions straight to feelings of hopelessness. I will long for the days that I could work 12 hours, go drink for 4 hours, or play with my son for 4 hours, go to bed, get up, and do it all again.
Then I will tell myself it could be worse. I will remind myself to focus on all the things I do have, all the the things I am still able to do, and I will soldier on. I do count myself truly blessed!
I still go back to loneliness. I live with a seven year old who counts on ME to be the strong one. He is only with me half of the time. So when he is away with his Dad I am conflicted. I miss him so much but it gives me the chance and permission to collapse and not feel guilty about letting him down.
It is lonely! I don't have someone to take care of ME.
To bring it back full circle, we all suffer so much with this evil disease. We feel pain that we cannot describe. Our bodies become almost foreign as they vibrate on the inside, tremble, twitch, itch, burn, chill, and lose strength.
We suffer and are told by many that it isn't even real. Those who love us listen but cannot begin to understand our conquest.
The illnesses is terrible. The treatment is often worse. There are many parallels to Cancer but one parallel escapes us. The understanding and support are not the same.
If it were not for the ILADS protocol and the brave experts who are risking their licensure and livelihood to treat me, I would not be holding a job and going to law school right now. I fear I'll never live the American dream because I've spent so much out of pocket on treatments. IDSA and the AMA need to stop protecting their own – their sham goes against the very Hypocratic Oath they claim to uphold!!
I filled out this survey – I believe in early October. Am I requested to do it again?
Sue, filling out the survey once is quite enough. We're still trying to reach people who haven't had a chance to take it yet. So feel free to forward to people you know who would qualify.
I went to a new internist/ mine joined a company so I would have to pay $1500 a year just to see her. She only would give me the Western Blot test. Started with another internest, She is not even receptive that Lyme exists, so I have probably wasted my Medicare new Dr. information fee. This Dr. is obviously not going to be able to coordinate my health care with a Lyme protocal whether it be one composed of Alternative medicine or both. Now I am wondering what to do, as money is scarce and Lyme Dr.s want at least $375 to see you upfront. I understand their situation, thanks to being afraid of the insurance companies and the AMA etc. , etc.,
The public has very if any understanding of this disease we are living in the environment of pre-HIV.
There is no explanation, or is there? Could it be $$$over our lives, I do not understand and hopefully the test mentioned in this newsletter will clarify to other Medical Institutions Lyme Disease is here and it has infected millions of people and destoryed lives, and still is an extreme Disease to be dealt with before it gets beyond anything we can imagine.
It is looking like things are moving in the right direction as far as more public awareness about Lyme disease and co-infection. Also it looks like new and better testing is in the makings. I know this is bigger than AIDS and we need more attention and funding. I myself have suffered for years and so have many others. Now the drs. in N.E. involved in breaking anti-trust laws and the ISDA need to get on board.
A change has to be made. Too many people are suffering including children. I live in Ma and we are infected with ticks and lyme disease everywhere but are blood results tests mostly come back normal and we are told that our symptoms are in our head and told to seek counsling. I am curantly house bound with debilitating symptoms. my life as I knew it, is gone.
Why should any of us want to keep our name and contact info confidential. Seems the survey would carry more weight if our names were included. We do not have leprosy or VD. If this is going to the IDSA they may want to contact some of us.
I filled the survey. It would be helpfull if there was a comment section as I am the mother and not the one affected by Lyme. Hope it will contribute to improving the guidelines. My 11 y/o son has been affected for 4 years now. His pediatricians were ignoring his complaints for 3 years. Still thought his blodd work was negative although the western blot was positive without any doubt. It leads to few results to navigate the allopathic medical system with such polarized approaches. Also, my insurance won't pay for his treatment.
IDSA and CDC has blood on their hands. They have no authority to change any guidelines. Why do we even give them the authority to change anything? These incompetent idiots need to be put away. They should be arrested and put on trial for manslaughter of thousands of people who have died from this disease because of their asinine policies. They should lose their licenses to practice and be sued for millions of dollars in malpractice for the suffering of thousands of children and adults who's lives have been forever changed because of their arrogant policies. It will only happen if we the people band together and make it happen.
CDC Canada follows the IDSA guidelines. Thousands of us are sick. Thousands of us need help. Thousands of us wished we could have completed this survey. Thousands of us are waiting and watching. We ALL say Thankyou for the lives you are helping to save !!
I was refused treatment and not even allow to the Dr.s office when I first got Lyme Disease back in 2000.Later when more symptoms presented they put me on antidepressants.Then I had Lyme Disease and had to take MYSELF off of the antidepressants!thankful physically I was in top shape. The disease went on for 3 months before the neglectful Dr. sent my records 10 miles to new Dr at my request.While even chronically sick with the disease I could have WALKED the records that far in faster time.I educated myself on the disease whenever I could crawl to the computer while waiting for records to transfer. I got diagnosed by my new Nurse Practitioner and asked to go to a Infectious Disease specialist close by. Was lucky a well known Dr. who did pioneer research on Lyme started this ID practice and that is why I chose them. I insisted on Rocephrin intravenously and they obliged. I feel I am cured even though through the years before symptoms presented I had at least 8 bullseyes!!! That was before public service announcements on Lyme were on T.V and Dr and I thought that I was just allergic to ticks.
I had no support system at all.But I persevered!!I am in good health now for the most part and can run 4 miles at the gym. Good luck to everyone who has this disease. I am one of the few who have triumphed over it .
I filled out the survey with hopes that the conference in October has maybe impacted the perpetual lie that lyme disease in chronic form doesn't exist. I continue to be amazed by the fact that this bacteria has been well recognized since the 80's and still no move forward. I really would like to know the reason for why the stifling attitude remains. Its like being in the movie Ground Hog everyday. For every study that comes out that says chronic lyme is real and the bacteria is still viable after short treatment of antibiotics there is a contradicting statement that says it doesn't.
Contemplating the magnitude of the disease (ie many countries affected)why is it that the countries are not working together to figure this out. It makes no sense.
Please let doctors treat patients with lyme, or lyme sympoms, with antibiotics. It can only help them. Too many people are going without antibiotics that would be cured by them!
We are being missled about Infectious Mycoplasmas and their use in conjunction as a co-infection of Lymes disease. This coinfection leads to further morbidity and virtually NO doctors understand pathogenic Mycoplasmas. Bartonella, Babesia, HGE AND Mycoplasmas make Lymes EXTREMELY hard to diagnose and treat.
To top that off, how can tests that look for antibodies be utilized when research has PROVEN that you need to look for the DNA of the bacteria(s). The surface protein of Borrelia Burgdorferi changes (pleomorphism) constantly so the antibodies keep changing to try to find an ability to attack this bacteria. A Antibody test is innefective in this manner. Research Dr Lida Mattman PHD Immunology, Virology, Yale, Nobel Prize nominee and her use of the Q-RiBb test and see how she was able to get a 100% confirmation of the DNA of the bacteria. That's the Gold Standard, but it was dissmissed as being TOO accurate. We are being lied to about this disease and its effects. The Gov't KNOWS there is a bacteria or numerous bacteria that are extremely hard to treat and consequently Pharma industries are concentrating on making symptom reducing drugs to compensate while we suffer and know it's ONE thing causing our symptoms. It's a PROVEN fact.
If ALS, MS, Lupus and other AI illness sufferers get intraveinous Rocephin treatment, they get better. And the ALS patients actually return to normal lives. That PROVES this is bacterial in nature. We are being suckered into spending trillions on drugs when all this could have been avoided by a dosage of Doxycycline in the first few days of symptoms.
Please revise you guidelines before more people die….It's way past time
I wish there was a section in the survey for additional Comments. The Daycare down the street was infested with Ticks. What about the Innocent Children & the Parents that try their Hardest to take care of these Children, being so sick. This is a terrible disease. I can't not believe that Children & People Cannot Get the Proper Care needed, proper testing. That There Are Guidelines We have To Follow For Our Health. If I was Treated Properly over the past 2yrs. I would not have lost my Job, my Life & would not Have to go Through This Disabling Pain. All the Money I wasted seeing doctors & the Insurance Companies money wasted on so many tests. MRI, EMG, Physical Therapy. This is OUTRages. These Guidelines Need to Be Changed.ASAP . Before we lose more lives to this Lyme Disease, it's spreading infections that are also not detected in Blood Test. Come On. How Long are we Going to Waste Money & LIfes & Be controlled By Guidelines. I always believed that Guidelines were to Protect the People. We The People Demand the Changes to Save OUR Lives & OUR Children Lives.
I wish there was a place to leave a comment on this survey. The Daycare down the street from me was infested with ticks last spring. Guidelines need to be changed to not only save lives but to give accurate testing (where People get to choose)& insurance companies should have to pay for accurate testing. Proper Treatment, to kill the Lyme & the infections the lovely ticks are giving us. Research Lyme & all the infections & coinfections the ticks are infecting us with. We the People Should be Able to comment on the changes & be sure the Guidelines are for The People. Not just for Doctors & Insurance Companies.
IDSA standard DOXY solved my acute LD symptoms but triggered more than 15 years of recurring infections. Requiring three surgeries and inducing chronic LD symptoms that forced me out of employment and early retirement for a total of 6 years.
Chronic LD is real as I am now under ILADS protocol almost clear of all symptoms.
Anonymity is an essential part of survey validity. It helps to ensure that people feel comfortable in talking about personal views. If you feel you want to share your name with IDSA, feel free to write them directly, but please do not assume that others feel the same way. In our state, the medical institution where IDSA has the most influence has harassed both physicians and patients, some of whom have been emotionally traumatized by the experience. We are working on some initiatives to change that, which are bearing fruit, but until then, anonymity in a survey such as this is far more likely to result in the true range of experiences people have.
THERE IS DENIAL AND WILLFUL CONCEALMENT OF THE TRUTH. PATIENTS ARE BEING HARMED AND INJURED!!! HOW MANY MORE PEOPLE HAVE TO SUFFER AND LIVE A REDUCED QUALITY OF LIFE WITH THESE INFECTIONS? YOU MAY ONLY BE AN INFECTED TICK BITE AWAY FROM YOUR OWN REALITY!!! PATIENTS REQUIRE- NO DEMAND- INFORMED CONSENT. IT IS PART OF THE PATIENT BILL OF RIGHTS, AND THIS IS BEING VIOLATED. THERE IS A DUTY OWED, THERE IS A BREACH OF DUTY, THERE IS INJURY, AND THERE IS CAUSE RELATED TO THE ABOVE STATED. THIS SETS THE STAGE FOR MALPRACTICE. THERE ARE TWO STANDARDS OF CARE FOR TREATING LYME DISEASE. WE HAVE A RIGHT TO KNOW AND MAKE INFORMED DECISIONS ABOUT OUR HEALTH AND WELL-BEING. THIS IS OUR MIND, BODY AND SPIRIT- NOT YOURS!!!!!! Linda Olley, R.N, Mis-diagnosed for 20 years with history of over 100 tick infestations- currently under treatment. Leader of the Harrisburg Area Lyme Disease Support Group,and Regional Leader for Lyme Action PA.
Lyme disease is not taken as seriously by accepted medicine as it should be. Only real truth works. Many people, including me, are suffering. I have had to treat myself by what I learn on the net. Because many doctors do not understand Lyme, I am afraid to use conventional medicine at all. A doctor would not be able to take, what I am doing for Lyme, into consideration when treating me for anything else as well.
Thanks, Lorraine!
My lymes exacerbated the stress of my mothers death which in turn exacerbated my moods and anxiety and behaviors. I lost my job at the College over it. Anytime I get any infection at all, I have the added danger of the Lymes. Prevention of Lymes is too late for me, but we need more information on what we can do to prevent the onset of infection, what therapies might help, what supplements work, How can we reduce stress.
MY comment is when you tell your Dr you were bit by something they don't believe you and treated me for sinus infection and you get sicker and sicker and I still don't feel good
I have lost So Much of my Life, due to Lyme,Babesiosis,Bartonella (if any more infections, I don't think I even want to know, LOL)… It's time for a Wake Up Call; time for doctors to get a bit more inquisitive,interested in their patients who suffer "weird" symptoms that "make no sense to" them, & learn how to better Serve us, yet "do no harm!" They also need to be in-the-know re: the deleterious effects of water-damaged homes & its resultant molds, which further strip us down in our immunity!
Is it me or were some of the survey questions hard to understand?
I think the IDSA is as useless as TITS on a boar Hog the same as the USDA ….we have let them slide way to long they need to be shutdown ….tom
I am so taken back by the amount of Doctors in CT who are still in denial of the treatment Lyme!! I wasn't diagnosed or treated correctly for 5 years during which time I had giving birth to our son. It was his pediatrician Dr. Charles Jones who asked me if I was ever bitten by a tick. He drew my blood and sent it to the proper labs two weeks later I was told, not only did I have Lyme but many co-infections as well. Our son was tested and sure enough he was born with Lyme. It is so heart breaking to have witness the daily struggles he has had to endure the past 13 years. No child should have to work so hard just to do everyday activities. This could have and SHOULD have all been avoided if I was diagnosed & treated properly!!
In MT, currently being falsely-accused of a FELONY w/ penalty of $10,000 and Involuntary Commitment in the Montana State Mental Hospital for false-fabricated Munchausen's by proxy, Delusional-Somatic type "None of her physical symptoms nor the physical symptoms of her two minor children have ever been substantiated by any physicians. She is a harm to herself, her children, and others. She is "gravely disabled" denied our individual and constitutional rights, privileges, accommodations, benefits and immunities under The Americans With Disabilities Act (ADA) of 1973 (accommodations), 1990 (local and state entities and activities) and, as Amended 2008 for further protection by President Obama (for "as regarded" related medical conditions known to recur and/or in remission) under Title I, II, III, V Section 504 federal law "unconstitutionally held hostage under state custody, w/ "unconstitutional" taking of: life, liberty and property under (ADA)federal law – (w/ NO immunity by the State!)
IN NEED of NATIONAL ATTENTION/NEWS!
I am angry at the system of medical ignorance that has taken my life away for 25+ years. The treatment after one year of trying to kill Babesia has been dreadful but hopefully that parasite will be gone soon. Then we go to Bartenella and when that is erradicated we go after Lyme. Sounds like another year of my life and treatment but hopefully a life. I am already in my Golden Years so I would like to be well enough to enjoy them soon. We must find a way to bring more awareness with someone very famous like Elizabeth Taylor did for Aids….thank you
Bitten 4 years ago. Found a caring Lyme-Literate Doctor last May.I have Bartonella also. Antibiotics prescribed now for 16months.. Slowly recovering…meeting numerous infected people here in Fredericton,New Brunswick…Blood Tests are a joke.
i was needlessly ill and felt like I was dying cause I was for 5 years. To get diagnosed & treatment was a battle all on it's own. It was a fight, an expensive one. The ISDA is hiding something in connection with this disease. It is so simple to treat early on. What's their problem? Denial? Conflict of interest. If I didn't fight to have my treatment, ABROAD, i would be in a home having my diapers changed. So, that's what they prefer? Sorry, this chick thinks for herself. I'm better now. I run, I work, I volunteer. I have my life back. Don't put so much faith in your old methods of testing. You may as well stubbornly stick with the theory that the earth is flat. Face it, it's just ridiculous. I am constantly writing my story on these internet sites and they get no one no where. I hate you guys.
A SOME ONE SAID,BLOOD TEST ARE A JOKE HERE IN CONNECTICUT. EVEN IF A TEST COMES BACK POSITIVE YOU CAN ONLY BE PRESCRIBED 2 WEEKS AT MOST ANTIBIOTICS. BUT MOST OF THE TIME THE TEST COMES BACK NEGATIVE. YOU HAVE THE SYMPTOMS AND ARE SUFFERING, BUT NO FURTHER TESTING IS DONE. IT IS A SHAME THAT WE HAVE TO SUFFER BECAUSE OF LACK OF INFORMATION REGARDING LYMES. WISE UP DOCTORS SO YOU CAN TRULY HELP YOUR PATIENTS.
I've had Lyme disease and another co-infection since 1995. Noone knew what was wrong with me and made my husband and daughters beleive that I was pretending I was sick. Then on my own protocol, my husband, my sister who lives in Pa figured out what was wrong with me. There was no good reason why I had to suffer like I did all those years ago, because the "mainstream medical community" didn't do their job to figure out what I was dealing with. These men and women who study medicine and claim to be doctors had better return to school and figure it out. Then we have to deal with IDSA and their ridiculous guidelines, all I know is someday when you leave this earth, YOU are going to have to answer for this, why you let so many people down, why you didn't tell them the truth about Lyme disease and then do something about it. There's no reason on earth or excuse for how Lyme victims and their families are mistreated, denied, prejudiced against for having Lyme disease.For goodness sake, LYME DISEASE is as real a disease as Aids, Cancer, MS, etc, you don't seem to mind how much money and research goes for those diseases BUT when Lyme comes up, the LYING starts! May God forgive you for what you are not doing to help all of us who suffer and have suffered needlessly at the hands of IDSA!
I have been treating LD for 5 years after a positive Western Blot and years of varying symptoms. So far, even though I have insurance, I am still out of pocket $75,000 and there is no end in sight. Some of the treatment my doctor would like to try are too expensive and not covered, so I end up trying lots of alternatives and running up my bills even further. If doctors could get on board with what is and what isn't lyme, and decide to treat patients who don't feel well, we would make progress. At this point, after throwing $75K away on treatments, I may have to stop treatment altogether because I am still unwell.
If it were not for the ILADS protocol and the brave experts who are risking their licensure and livelihood to treat me, I would not be holding a job and going to law school right now. I fear I'll never live the American dream because I've spent so much out of pocket on treatments. IDSA and the AMA need to stop protecting their own – their sham goes against the very Hypocratic Oath they claim to uphold!!
i've had chronic lyme 42 yrs; 35 yrs. MISDIAGNOSED by 40-50 drs. UNACCEPTABLE!
NONE of those drs. ever mentioned lyme disease, had i seen a tick or EMBEDDED tick, a BULLS-EYE or any type of rash? NEVER!
what saddens me the most is this:
not only are we told over/over "IT'S ALL IN YOUR HEAD" and shipped off to the psychologists/psychiatrists, we are DESERTED by family/friends who think we've gone CRAZY!
when we find good LLMDS who treat ILADS, we submit our bills to our health insurance companies expecting them to pay THEIR FAIR SHARES!
NOPE! IT'S CALLED "EXPERIMENTAL" THERAPY AND DENIED OVER/OVER! HOGWASH!
my husband and i both on medicare with me being on DISABLED medicare, currently pay $1212.75/MONTH!
******************************
many of my close online friends have lost:
their jobs, HEALTH INSURANCE, spouses/SO and child custody, family/friends, their homes, bankruptcy, and the ultimate sacrifice …
THEY COMMITTED SUICIDE TO END THEIR 24/7 PAIN since they had nothing to live for anymore!
idsa guidelines need to be changed IMMEDIATELY; IOM found enough discrepancies during the testimonies/EVIDENCE PROVIDED including PJ LANGHOFF'S, THE BAKER'S DOZEN, LUNATIC FRINGE, JUNK SCIENCE book.
the guidelines need to be changed to:
long term antibiotics, supplements, and alternative therapies are permissible under the direction of ILADS DRS!
i could go on and on; CHANGE NEEDS TO HAPPEN DURING THE NEXT GUIDELINES SUBMITTED! NO EXCUSES IDSA DOCS! NONE!
bettyg, iowa lyme activist
http://www.mdjunction.com lyme board HEAD leader,
llmd coordinator .. i've SAVED over 50 -60,000 LIVES in last 7 years with my sending out LLMD names/info and my welcome letter full of ACCURATE links/info! THAT'S WHAT I'M PROUD OF!
Due to the current IDSA Regulations, I have written many sympathy cards to the families who lost their loved ones. THE IDSA needs to consider those who are suffering due to their arrogance.
Why does the IDSA refuse to learn about chronic Lyme? Do they have something against chronic Lyme sufferers? Why do they ignore the facts and continue with their own madeup imagined Lyme treatment guidelines, which are meant to cure nothing but only serves to ease the pain of the insurers.
I'v had Lyme Borreliosis Complex for 30 years. I went through all the misdiagnosis issues that so many talk about. That went on for 5-6 years after I had had it for 20 years and symptoms were unbearable. Finally I went to a doctor who diagnosed me clinically and put me on oral antibiotics. This played havoc on my disease, I herxed much of the time. Unfortunately there was no immune building aspect to the program, so a year or so after treatment ended ( that's 5 years of orals…), it came back w/ a vengeance. That's when I was bit two more times, and was treated by ISDA protocol. 3 days tetracycline. Once I went to the emergency room and they gave me ONE doxycicline and said I would be fine. I just had to set him straight. I was again sent to all the doctors who misdiagnosed me again. Bear in mind I have kept a journal of every day of my disease for 10 years so it is all recorded. Thank goodness IGenex came along! Praise God! My doctor consented to having a blood sample sent and it came back loaded with positive bands. (past Western Blots came back w/ positive bands, but not enough to satisfy CDC standards) Now there was no question, I was way above CDC standards. This is when I went on a serious quest to find a specialist who would treat me intravenously and build my immune system at the same time. I found one! I am still doing treatment so I cannot give the results, but I can say my body has responded positively, and the immune building supplements have done wonders. I can judge this by the increased hair growth (which I had lost over the years) and my fingernails growing. They never had before. I have more energy, and rarely have bad days. The unbearable pain is gone, so something must be going right! I highly recommend to all "Lymies" to do their research and find a doctor who will treat you on many levels. And treat for all co-infections ticks can transmit. Good Luck, all! Amy Jo
My families life has been destroyed for 5 years. My husband got lymee disease with rash 5 years ago. Dr wouldn't treat without positive lyme test of course the uses less Elisa test came back negative. So no treatment instead maybe 100,000 worth of useless tests diagnosed with Ms, fibro and left one'of the best hospitals in new England saying there is nothing we can do for you after 3 mri`s and 10 specialists.. then I become sick hmmm only transmitted through ticks WRONG!! After my symptoms varied from'his I didn't think lyme so i went through the same BS as him. Surgery for no reason and hope fading.. raising 5 kids and two useless parents all thanks to the idsa. Now two weeks ago my daughter diagnosed because I actually was sick longer than I thought and gave it to my 4 year old daughter through birth and breastfeeding.
I'm sick over my precious daughter having too suffer because of greed.. I have talked to thousands of people and the stories are basically the same. I hear of suicides and the depression you get from this sickness is like no other.
How does the idsa sleep at night knowing they are responsible for so many deaths, ruined lives, pain and suffering like no other and the list goes on.. to millions of people and most people walk around not knowing they have lyme to even try to get help. These people have someone else to answer to when their lives end and I don't think they will be going upstairs for one second but to the very bottom floor of hell.
The chimp that ripped a women's face off had chronic lyme disease. Murder suicides in such high numbers from lyme sufferors. The changes that happen change every aspect about the infected person. This is a living hell and it never ends. Every dime goes to trying to figure out a plan to treat yourself and family.. your life as you know it is over.
The only disease I'm aware of that has a full-time, proactive, adversarial group, (IDSA)to deny it's very existence. They are either nervous that their 'position' on Lyme will result in a massive class-action lawsuit, or something deeply diabolical is in play. After 16 years dancing w/this disease-10 of it undiagnosed-untreated. I lean towards the latter. The IDSA docs told me there is no such thing as Chronic Lyme and there was no Lyme in California.
For 20+ yrs I have been fighting along with hundreds like me for the recognition of Lyme Disease and its seriousness to us as people! I know of NO OTHER DISEASE,REPEAT, NO OTHER DISEASE that we as knowledgeable people have had to fight every single day,every single hour to try to get our medical community to say to us "Yes, you have Lyme Disease"!
Why? Why do we have to fight so hard? Why does every single issue have to be taken to our congress as a bill to pass when some of us are dying of this dreadful disease!!
I don't have the answer. I wish I did. After my 20+yrs, you'd think I would but I don't and after fighting bill after bill and sending emails to senators and congressmen,phonecalls to this one and that one, I still don't. But you know what,I'm still going to keep fighting.
Not so much for me anymore because after all this time my body has been ravaged but I want to help prevent someone else from having to go thru what I've put myself and my family thru for all these years.
Could someone tell me the DEADLINE of the Survey? I can't seem to find it. Thanks!
Please revise your stance on Lyme. Too many of us are suffering for no good reason.
I went undiagnosed with Lyme for two years because, "there isn't any Lyme disease in California." update the tests and get out of the pockets of insurance companies
i am totally in suicide mode,the pain and suffering is horrible!!!if not for my love of god i would have surely took my life!!!enough is enough idsa is committing a horrific injustice to all that suffer from lyme and they will be held accountable!!!!!!!!!!!
Please repost the link to the published 2009 Health Policy survey – we cannot find it in your blog archives. Thank you.
It is heartbreaking to read all of your comments! I too have suffered. My grandmother told me to always check for ticks when I went to the bathroom. I remember the day when I took one off. 6 months later I was fatigue, couldnt run, school was very difficult to get through. There have been so many symptoms in these last 37 years. I really am sorry for all of us that have been unjustly denied treatment. My husband is crippled too from this. SOmeone spoke of the doctors who are unjustly treated too. The only way I knew I was sick all these years is because I read the symptom list my husband was going to give to a friend of ours. I pray everyday for this whole thing to get better, I pray for the people, more doctors, congress, more awareness, and more clinics. God Bless you all.
I apologize for the somewhat Kryptic title. It only allowed me so many characters so I had to be creative.
I have been thinking about this from the first time I found myself on the bathroom floor. My face hovered over the toilet bowl as my body trembled, almost as if I were having a seizure.
I did not have the strength to keep my seven year old son out of the room; so he sat at my folded legs in tears. He cried as he said to me "I don't want you to go back to the hospital, Mommy."
This was my first Herx reaction. Little did I know that as I continued to work full-time, making it through my day-to-day life as a single parent, I would deal with chronic pain and nauseau on a daily basis.
I know that as my doctor and I work together to find the "magic" combination that will kill off the Lyme and the co-infection(s) I will have to suffer through the fact that often the "cure" is as difficult (or worse) than the disease.
When the dose increases or changes the nausea will often get worse. The weakness will be unpredictable. The pain may manifest itself in a new muscle or joint or just become more severe in all the familiar places.
My mind will have no choice but to take me and my emotions straight to feelings of hopelessness. I will long for the days that I could work 12 hours, go drink for 4 hours, or play with my son for 4 hours, go to bed, get up, and do it all again.
Then I will tell myself it could be worse. I will remind myself to focus on all the things I do have, all the the things I am still able to do, and I will soldier on. I do count myself truly blessed!
I still go back to loneliness. I live with a seven year old who counts on ME to be the strong one. He is only with me half of the time. So when he is away with his Dad I am conflicted. I miss him so much but it gives me the chance and permission to collapse and not feel guilty about letting him down.
It is lonely! I don't have someone to take care of ME.
To bring it back full circle, we all suffer so much with this evil disease. We feel pain that we cannot describe. Our bodies become almost foreign as they vibrate on the inside, tremble, twitch, itch, burn, chill, and lose strength.
We suffer and are told by many that it isn't even real. Those who love us listen but cannot begin to understand our conquest.
The illnesses is terrible. The treatment is often worse. There are many parallels to Cancer but one parallel escapes us. The understanding and support are not the same.
I filled out this survey – I believe in early October. Am I requested to do it again?
Sue, filling out the survey once is quite enough. We're still trying to reach people who haven't had a chance to take it yet. So feel free to forward to people you know who would qualify.
It is looking like things are moving in the right direction as far as more public awareness about Lyme disease and co-infection. Also it looks like new and better testing is in the makings. I know this is bigger than AIDS and we need more attention and funding. I myself have suffered for years and so have many others. Now the drs. in N.E. involved in breaking anti-trust laws and the ISDA need to get on board.
I went to a new internist/ mine joined a company so I would have to pay $1500 a year just to see her. She only would give me the Western Blot test. Started with another internest, She is not even receptive that Lyme exists, so I have probably wasted my Medicare new Dr. information fee. This Dr. is obviously not going to be able to coordinate my health care with a Lyme protocal whether it be one composed of Alternative medicine or both. Now I am wondering what to do, as money is scarce and Lyme Dr.s want at least $375 to see you upfront. I understand their situation, thanks to being afraid of the insurance companies and the AMA etc. , etc.,
The public has very if any understanding of this disease we are living in the environment of pre-HIV.
There is no explanation, or is there? Could it be $$$over our lives, I do not understand and hopefully the test mentioned in this newsletter will clarify to other Medical Institutions Lyme Disease is here and it has infected millions of people and destoryed lives, and still is an extreme Disease to be dealt with before it gets beyond anything we can imagine.
How many more lives will be affected by Lyme? Now is the time for revised guidelines to help save lives and end the hideous suffering and life changing effects of this highly under-rated disease. Give people the chance to receive the proper treatment they so desperately need. Thank you.
your friend in lyme, Barbara
I was first helped by taking large amounts of iodine but now I am lyme free because of remote energy work. I don't know why the lyme community isn't going this route. I first did NMT, then moved on to Yuen Method. Intentional Resting and Ho'opnonopono are great. I have been transformed.
Our 15 year old son has fought this disease for almost two years now. We know he ogt bit in Oklahoma, pulled the ticks off and three days later BANG. Two weeks of anit-b, that was suppose to do it. Since we "so not have lyme disease in OK" Per doctor, well it would have saved the insurance company thousands, and us thousands of dollars just to do the right testing, and get some more lyme literate MDs. In Ok they leave out important bands to be tested, purpose, they don't know how to deal with it. So they choose not to. This country and the CDC should be ashamed of what they are letting these poor people go through! He has lost a year of school, he was a healthy active and very happy boy before all of this night mare began! Our story is too long to go into what he has gone through – but it has been sad!
I would have way way to much to say so this is my comment. Lyme disease sucks it takes over every aspect of your life & every inch of your body. One word to describe Lyme is Devestating Because not only are you affected but every part of your life & every person that is involved with you from your closest family & friends to your doctors & pharmacists & where you have blood drawn or the place you have your X-Ray's, MRI's or Cat-Scan's whom knows your name when you walk in because you are always having to go to one or the other so often. But the worse is that no one seems to care. That all of the tv networks talk shows, newspapers or magazines want nothing to do with a story on the true facts of Chronic Lyme & the hard answers of why it is ignored & accountablility of doctors & government officials whom are allowing Lyme to be swept under the rug. I have had Lyme since 1969 & didn't get diagnosed until the end of 2009 40 yrs. to late. Though there may not be much help for me except to control my day-to-day living there are many that can be cured or better yet never get Lyme to begin with.
To read all of these comments is like reading my biography. We are strangers connected at the deepest levels. If I have a good day I get so excited. I start making plans about what I will do tomorrow. I had a good day yesterday – that meant that for about 4-5 hours even though I was in moderate pain still and had to take frequent rests, I was able to do household tasks and pay a couple of bills. I even repotted a plant and sorted through a portion of the never ending stacks of paper stuffs that always seem to come last. I washed dishes. I used to be very energetic and organized and happy. My house was clean and I enjoyed cleaning. I could clean all weekend then go out for dinner and celebrate life with friends. Then go to sleep, wake up and start off the week fresh and new, refreshed! I had stamina beyond belief. Then I started to get sick, then really sick. All the excitement from yesterday is collapsed into serious pain today and STILL it surprises me. I don't know what my brain does up there that it can still be surprised to wake up from a good day and be in mind numbing pain and wish I hadn't woken up at all. The fog is back and hope flies out the window again. Then the cycle repeats again and again and again and I am so tired of people not understanding how serious this illness is. They cannot because they are not inside our bodies. If they were, well then they would be the ones adding comments to this list. If there were only a way for them to understand how intensely horrifying it is to lose your life in this way after being a vibrant, active, happy full of life person. I hope that pretty soon that Lyme disease sufferers start to be treated better and that they find a cure.
it's time things changed ! people need to be believed , to be cured, they deserve it; up to now ,the IDSA guidelines have told things which are not true ; antibitiocs must be taken as long as the patient is ill ; even in France I've lost my job as a teacher because of lyme ; luckily I am getting much better with 2.5 gr of amoxicilline and 200 mg doxy at the same time ; last month I had mosil and zinnat ; treatments must be different every 2 weeks so that the bacteria can't become resistant .
I was diagnosed and treated by three doctors through the years. I did have to go out of insurance network for their help, and we went into so much debt from having to pay out-of-pocket for treatment. We no longer can afford to go out of network. I am practically bedfast. I cannot hold my eyes open, hold my head up, walk more than a few feet; I cannot go shopping,to family celebrations, help my daughter who recently had double mastectomy/chemo and has four very active children. Just recently I began scheduling with traditional medicine doctors. Neurologist told me to schedule neuro-psychological testing. He treated me like a head case as soon as I said the words "chronic lyme dissease". Next I saw Rheumatologist; he ruled out Fibromyalgia, but agreed that chronic lyme disease is a hoax. Next, I saw an infectious disease doctor and she agreed that chronic disease cannot be backed up with scientific/medical findings. She mentioned that she follows ILADS closely, but has not found anything to change their guidelines. That leaves me with having to come home and learn to live as an invalid. As many have said, before me, 'my life is gone' as I once knew it, and no one can tell me why I have these horrible symptoms of very severe chronic fatigue. I feel like the walking dead; the livng dead. I believe there is something that is being missed because of conventional medicine and the way the medical community has learned to have such narrow vision, and no longer does the doctor have the attitude that "I am going to search and search until I can get to the bottom of what is going on in this patient". When this happens to the doctor or a family member, it has been my experience that it is those doctors that determine to help patients with lyme disease, but they are not supported; instead, they are attacked for their unconventional diagnosis and therapies. I pray that someone will get to the bottom of this before it is too late to help me, and many others I know that deal with the same symptoms. And…let me say….it is not all in our head. I have tried cognitive behavioral therapy to no avail. Please someone, help us
Can canadians fill out the survey?
My husband was diagnosed with lymes disease 20 years ago. He was treated with antibiotics and pro-biotics for 3 months and seemed to be symptom free for years. There were occasional illnesses that may or may not have been lyme related but this last spring he developed synovial cysts (painful masses in muscle tissue) and when retested for lyme was told that this was most likely a co-infection related to the lyme. He has been under the care of a "Lyme specialist for two months now and symptoms are improving. It is beyond comprehension that the CDC and medical industry does not recognize treatments effective in ridding patients of the horrible infections created by ticks. Please re-visit the treatment protocols and allow insurance companies to cover these treatments.
I am a school counselor in west/central NJ and regulary see kids and teens undiagnosed, untreated, and misdiagnosed who are infected with Lyme, and none of our medical centers recognize or deal with Bb for what it is. Many kids are on home instruction or 504 accommodation for "chronic mono", "bipolar", and "chronic fatigue"; many have known tick bites and known rashes; some doctors have told patients that if the rash goes away, it isn't Lyme! I was successfully treated 6 years ago for Lyme that manifested primarily as Parkinson's symptoms by an LLMD and have been working at educationg families and colleagues since then; many of whom have their own horror (and some LLMD success) stories to share. The mental health field in my area is completely oblivious to the psychiatric ramifications of neuroborreliosis, and a lot of harm is being done in the name of psychiatric help to kids as a result.
I have had Lyme since being diagnosed in 2002, and to this day still have most of my original symptoms! I have seen dozens and dozens of doctors including LLMD's and they have said sorry there is nothing we can do for you. so, I do alternative medicine, and it helps a little, but with no support it is tough to know if you are getting better or worse!!Am I sick or having a herk!!!!!!! chronic Lyme! Suffering becomes a way of life for most of us!!!!!!!!!!!
As I read all the comments here I think that we are all in each others stories and share in the hopelessness of the situation. As dire as things are for us, I have found that as a group we are very strong people. We are smart and willful people, people who have had bright and lively lives, who now struggle to live through this dreadful disease crawling on hands and knees for a way out. We are tough soldiers on the front lines but also guinea pigs and bank accounts for the INS and drug companies. Together we can be a formidable force and as we join together we will find our survival here. My story is yours. Years of misdiagnosis, years of unrelenting anguish, pain and suffering, pockets of money emptied so that countless, useless Dr's could send their kids to private schools, take lavish vacations, drive nice cars, live in beautiful homes free from an arrested life that we must now claim because of them. (The bonus was getting kicked out of a' 'highly respected and one of NY's best' Inf. Dis. Dr's office for mentioning Lyme while being told "Lyme is in the courts. I can't help you. You probably have AIDS and should get checked out." My tears notwithstanding, he did not examine me but walked out of the room and then I was handed a bill.). I don't usually write opinions like this in open forums but I believe its time for swift and concrete action. Our stories need to be heard via class action litigation in the Supreme Court of the United States. There is nothing left to lose because what we have already lost can never be regained. We can now only help the rest of the world's population from a horrible existence by validating what we know to be true about Lyme Disease and in turn help ourselves.
In essence, my message is really about the fact that we share this struggle together, not alone, and that our hope is best utilized as a collective force.
Every story is the same and there is not anyone in the medical field that cares. Although I do have a doctor where I live in Birmingham,Alabama that is helping me. This has been after thiry something other doc's I went to. Got the deer tick off my foot, 3 bands tested positive, but was told by the others that it doesn't exist in our state. I have been on antibiotics for 5 years. Stopped them about 4 months ago because I was feeling much better. Now I'm on the downside again and have started them again. I live day to day and really do not care about much. We are financelly ruined, my marriage could be better ( on my part )but I think I have given up. I want to kill myself so bad. It is so hard to keep living this way. I've had 2 and 1/2 knee replacements, and the pain is still so bad. I have had sugery on my right hand twice in the last 6 months. Have to have my other one done at some point and time.The only thing I have found that makes my life wonderful is when I am on the IV antibiotics. Insurance will only pay for 6 weeks of that, and that IS NOT long enough. But just to tell you how STUPID they are, they had rather pay for hospital visits and all these operations I have had than to heal my body.And believe me, it has been in the hundreds of thousands. One knee was close to 90 thousand dollars. So I really need for someone to explain to me why they can't do the math. Are they that stupid or just stubburn?? I'm to the point now that I do not care anymore. I have fought and fought and fought. I'M TIRED!!!!!
I have been suffering with Lyme Disease for 22 years (first 9 years undiagnosed). Please revise the guidelines. It will be too late for me because I am sooo sick and bedridden . I blame the IDSA for making my life and my husband's life a living hell.
Doctors (like politician) making guideline for everybody else, should NOT be able to profit from those guidelines. They should be totally independent of research, pharma and government entities so thet any pressure is for helping patients, not anything else. And last but not least, patients should have the RIGHT to choose an alternative treatment if they so desire. I don't want the government telling me what to medicine, herb, supplement or food I can or cannot comsume. This is the United State of America and that is not the government's job. I am one of the many walking Lyme dead.
For all who can, please make the effort to educate everyone so we can help keep others from getting this as well as find those who already have it and help direct them to some care. I educate the medical profession, businesses and organizations, flyer bulletin boards, etc. We are the ones who know what this is like – let's let others know!
BACKPACKER with more than 25 years with Lyme Disease!Neg Elisa. Roamed snake infested swamps and was dtagged hypochondriac by ID Dr.
IDSA doxy after 9 years , ILADS LLMD since 5 years. Positive IGENEX. I had all clinical symptoms,including some Lyme-rage but no joint inflamation.
I blame IDSA LD pannel for lying and crass incury.