Listen up! Speak out and be heard! Help CALDA represent your views to the IDSA!
The Infectious Diseases Society of America’s new Lyme disease guidelines review panel will hold a one day hearing on July 30. This hearing is part of the antitrust settlement that the Connecticut Attorney General negotiated. Of the 18 speakers selected to testify, two are patient advocates, including me. The testimony will be aired live on the internet on July 30 so stay tuned.
STAND UP AND BE COUNTED
CALDA is conducting a survey of individual Lyme experiences to give you a chance to have input. Results of the survey will be included in my testimony to the IDSA panel.
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. This survey should take 5-8 minutes. Note that once you start the survey, you will need to fully complete it. (You can not save it and return to it later.)
Lorraine Johnson, JD, MBA
- July 15, 2009 at 12:52 pm
Have had Lyme 4 times, the first back in 1985 and undiagnosed for over 2.5 yrs. Was on Lymerix test and have had problens ever since. Had knees replaced 2yrs. ago due to longterm lyme problems. Now both thumb joints are degenerating and will need surgery. And the list goes on…
- July 17, 2009 at 3:29 am
I was misdiagnosed with MS, epilepsy, chronic Fatigue, Fibromyalgia, all the while, mt Lyme infection was getting worse,and became neurological. Treatment COULS have been so SIMPLE!! NOW I will go through hell.
- July 18, 2009 at 5:22 pm
I wish we could have more than one survey per computer because we won't be able to give information on my husband or son. My daughter's husband will also be left out.
Second…this page is so dark it's difficult to read the prompts.
- July 18, 2009 at 10:16 pm
Thank you for your hard work.
I'm grateful to all who are able and willing to make a stand and present the all-important dissenting view. As a chronic lyme sufferer, I am affected daily by the flawed guidelines and by doctors' and insurance companies' use of them as gospel.
I filled out your survey, and posted a link to it on my blog. "Break a leg" in Washington!
- July 19, 2009 at 9:45 am
Happy to hear about the hearing.
- July 19, 2009 at 12:51 pm
I look forward to hearing more about the hearing
- July 19, 2009 at 9:46 pm
Fighting the good fight. Wish I could advocate with you. Watched Under Our Skin this weekend and it reaffirmed that I am not crazy, I have a disease, and a medical system that does not give a damn about it.
Looking to be a megaphone and a comfort to others who are even sicker than me. Anything I can do will be done. Just looking for ways to do it, Lyme brain and all…
- July 19, 2009 at 11:37 pm
I have suffered with lyme for about 5 years. I have been bedridden and homebound for about 4 of those years. Due to years of misdiagnosis by many, many doctors of all types of specialties–I now have chronic neuro lyme. I have been living a life of terrible pain and on so many medicines including narcotics for the horrible days. I don't want to give in yet –I don't have any great hopes in recovering either, Until I can find an excellent lyme literate doctor, well, I guess I'll have to live like this, sadly.
- July 20, 2009 at 8:43 am
I completed the survey, no-where did it restrict to US citizens only, I'm from the UK.
I have a clear history of tick bites and reactions. Because of the fallible testing methods I was misdiagnosed with ME/cfs The influence of the US approach to Lyme affects the UK treatment of chronic lyme, the existence of which is effectively denied. I have had to leave the National Health Service and go privately to a LLMD to have my concerns confirmed. We need a modern effective test to enable further research into the disease and associated co-infections, none of this is happening because of the restrictive approach of The Infectious Diseases Society of America
- July 20, 2009 at 11:48 am
I have also completed the survey, my life and especially my daughter,s life,has been ruined she was misdiagnosed with MS for 15yrs, is in a wheelchair, also my husband has it, and we are financing everything ourselves, I dont know when people will take notice, maybe when one of there loved ones is struck down!! Its Evil.and they are getting away with murder..
- July 20, 2009 at 1:35 pm
Thank God that there is someone trying to do something about this.
- July 20, 2009 at 5:25 pm
5 people in our family and we have all been diagnosed. I could fill out 4 more surveys. My son's and husband's stories are more more compelling. My son had three trips by ambulance to hospitals, had to withdraw from college. Has been on antibiotics for 13 months. He is so much better, but still weak and numb on his left side. I wish I could have filled out more surveys
- July 20, 2009 at 7:05 pm
All of my family has struggled day by day with the forrible effects of lyme disease plus the coinfections. My one daughter has autism. The time, emotional, physical, and finacial devastation of the cruel disease needs to be known by everyone!! Having narcotics for breakfast is not living!! May God be with you as you speak on behalf of all of us victims.
- July 25, 2009 at 7:13 pm
Many people are suffering unecessarily from Lyme Disease. This is caused by a well-studied bacterium, Borrelia, together with several other microbes like Bartonella and Babesia, all of which can be transmitted by different ticks found everywhere and other biting insects, as well as other modes of transmission e.g. through the placenta to the baby. If left untreated, or inadequately-treated, it will hide away in connective tissues on the body where it will remain as lifelong infection causing disabilities such as arthritis and neural signs like Bell's Palsy and is highly likely to be the main cause of Parkinson's, Alzheimer's, ADHD/autism – the list continues. We have only scratched the surface with this bug. It is treatable with vigorous antibiotic therapy, but if not treated at the start of the infection – before serological tests become positive – it will become established and may be impossible to eradicate completely even with modern systems of pulsed antibiotics and multiple therapies. It is really serious for those people who have it, and they deserve no less than the best treatments available. Presently these therapies are only available through those few doctors who have an understanding of this disease, which means that patients often have to travel around the world and pay privately for treatment which should normally be available freely to all. It is a critical point that the faulty IDSA Guidelines are followed by most or all other countries in the world, who believe rightly or wrongly that America is in the forefront of science. Sadly this is no longer the case as true enquiring science has been subjugated to the commercial interests of insurances companies. Money talks especially if paid to "experts" who will tell everyone that Lyme is easily curable. It is actually more difficult to cure than Syphilis or TB, as Borrelia is the most sophisticated bacterium on the planet, making its dumb cousin Treponema (syphilis) look like a learner. All Doctors need the right training and the permission to treat it properly, without restriction from outside bodies with vested interests.
- July 30, 2009 at 8:52 am
Very well put, Mr. Swift. One big mistake the media makes is just indicating Lyme is caused by a "bacterial infection" and the very next place our minds go is, "So? WE have antibiotics. No problem." They NEVER mention how virulent the Lyme disease organism is. There are a few things every media outlet should say, EVERY time they cover Lyme. 1) how RARE the bulls-eye rash is, less than half of cases get it, 2) This is a very dangerous organism, 3) You will almost NEVER feel a tick crawling on you, and 4) They numb before they bite, so you won't feel that either.
OH…and they should also let the public know how HARD it is to even find a doctor willing to help.
Had I not been bitten again this spring, I'd have gone to my grave never knowing what was ailing me.
I like to ask people what they'd say if American Drs. had influenced insurance carriers so that TB patients were told they could not take long term antibiotics.
Yes-It makes Syphilis look like a learner! LIKE with Syphilis, by the time it becomes deadly, it's masquerading as something else. I would SO want my organs biopsied for Lyme and entered into the records if this kills me.
Media misinformation in part, caused me to suffer for years, and never suspect Lyme when anyone who KNOWs Lyme would have seen it right away.
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