Suing architects of Lyme policy, as task force meets to review it
HuffPost, December 7, 2017:
by Mary Beth Pfeiffer, investigative journalist
For nearly a generation, a small group of physician-researchers has directed how Lyme disease is diagnosed and treated in the United States, Europe and, as the disease spreads, Canada and Australia too.
As a result, US insurance companies routinely refuse to pay for antibiotic treatments longer than 28 days. Doctors have been punished for prescribing them. Patients have been told their lingering problems are psychological or they have other sickness.
Now, a lawsuit asserts that the design and implementation of Lyme disease care–as outlined in the treatment guidelines of the Infectious Diseases Society of America—is rooted in corruption.
… Significantly, a defendant in the lawsuit, Dr. Gary Wormser, was also a member of the working group; his name was removed from the roster this week, four days after 10,000 people signed a petition by LymeDisease.org opposing him. READ MORE.
- December 7, 2017 at 12:57 pm
How do I join one of these law suits?
- December 7, 2017 at 1:34 pm
Progress and Amen, the working group is going to be held on my birthday 12/11. I was diagnosed in 1991, I am now 53 years old and I am living proof, documents to prove it, that 30 days of oral antibiotics at the onset lyme or 29 days of IV antibiotics 25 years later gets rid or accurately treats this de·bil·i·tat·ing disease. Regardless of whether their was money exchanged, or conspiracies among groups. The fact remains that NONE of these defendants did nothing to recognize the dire need for further research, improvement of testing or better treatment in over a century to help human kind. . I don’t care who is to blame or why, I just want to work again. I have made major improvements because i AM A FIGHTER and my soul refused to settle on the only “approved” treatment an Infectious disease doctor was able to treated me with me. It totally baffles to my core that HIV has come so far in its treatments ..but a disease I have had for over 25 years has not had ANY further advancement since the day I was originally diagnosed on paper 1991. While the doctors who are passionate and have tried and proven treatments have been utterly laughed at by approved Specialists. I was forced to pay hard earned CASH to get to where I am today in the progress of my disease and I had PHNEOMENALL Insurance coverage. I literally lost my mind, and my job due unable to defend myself. I had no sleep, mind fog and a body that ached for months and yet I was forced to crawled through it for help ALONE. What baffles me is the fact that NOT ONE of these defendants and or our Government/legal/medical defense team did anything to research or investigate into WHY there were STILL Lyme victims after so called “guidelines” were set to work?? If a car still stalls after going thru reports of an accident or a day or two at a mechanic shop…it still stalls … the car is still NOT running, its NOT FIXED… then more research, more trial and error more dilemma,,, Even a mechanic will call another friend or mechanic to figure it out when he is baffled ..but no …not with this car… I am on my own…. I get to stall for the rest of my life because my illness is deemed not important enough to be looked into further. I have worked since I am 12 years old. raised my 3 kids working 2-3 jobs..I own a home and pay my taxes and taught all my children to be upstanding citizens.. But, I had to tell them I don’t know if I will ever get better because there is so much controversy over this disease one hand doesn’t know what the other is doing. I am ok enough to work today because of the QUACKS the Specialists told me I chose to go to after little relief from their “guidelines.” I am ok to barely read and think about this post because I chose to BUY a real Lyme literate doctors BOOK and find a local doctor who was also passion in helping me who helped me follow that book and still PAYING CASH for treatment even though I also paid my monthly health insurance premiums each month that would NOT pay for my treatments..not even a medication that did me WONDERS…. I am NOT better, I lost my job of 15 years..I could not defend myself mentally, I had no idea what I was up against with my health, let alone fight for my job. I am now working below my qualifications and wages because I fear the lyme will come back again full force and I don’t want to embarrass myself or get fired for being sick in the corporate world. . But, I have to work because SS disability doesn’t recognize Lyme. I stopped treatment. I don’t have the money to treat and help my blurry vision, my shortness of breath or my day sweats. But, apparently the government doesn’t think any of that is important. Tell me,,,, did they defendants, any of them, help me during their stay as advocates for my disease? SOME ONE please stand up and help us…soon!
- December 16, 2017 at 3:04 pm
Amen, sister. Your words could be mine. Our stories are so similar. I spend my days balancing what my mind remembers my life used to be, with what I know I am now capable of. What used to be a side note in my day’s schedule now overwhelms me. I no longer speak of my aches or woes. I have chosen not to spend my dwindling energy complaining. What started as what I thought was the onset of the flu in 2011, now has a very different spin. But I am now realizing that I do need to chime in. I need to speak my story. All of our weak voices together are strong. Thank you for staying strong and staying in the fight for our rights, unlike me. You give me the desire to fight again. Thank you.
- December 7, 2017 at 1:50 pm
Is there anything current Lyme patients can do to help win this law suit?
- December 7, 2017 at 2:16 pm
For years I have contacted HBO, CNN, 60 Minutes, Michael Moore, Bill Maher, and anybody I could think of who could daylight Lyme disease as we know it. As an individual I could never get much response. Perhaps now that a lawsuit has been filed, these people should be contacted as a way of reaching more people about what has happened these last many years.
- December 8, 2017 at 5:21 pm
Organizational Perspectives: Health Care Providers
who are the stakeholders?
Work Plan Development
IDSA should be excluded from both until lawsuit resolved
all our advocacy groups should request this
- December 9, 2017 at 8:01 am
I am with you Robin. This disease killed my Mother, nearly killed my nephew, has ruined his life, and making my life total HELL. I want to be included in any class action suit. Tried contacting Senators and Representatives for help. Made appeals to Medicare, insurance, etc.. Contacted State Attorney Generals’ offices, etc., etc.! Have come to realize that “well behaved people rarely make history nor get anything done! I believe the only way we will get results is by doing what was done when HIV wasn’t being treated back in the ’80s. I DO NOT WANT to be a Tuskegee experiment! I want what I have paid for with my insurance premiums and I want treatment.
- December 10, 2017 at 4:32 pm
So happy to finally have a voice for sick children, whose lives have been absolutely derailed due to science deniers of lyme disease.
Meidcal neglecit should never be tolerated in any country ,,,,,,,,,,,especially the United States.
- December 11, 2017 at 8:41 am
WE ARE tolerating the way WE and OUR loved ones are being treated in the United States of America! WE are not uniting, WE are allowing ONE group in TEXAS to sue! WE are NOT helping them! WE ARE THE VOICES! WE ARE THE PROBLEM! WE WANT OTHERS TO DO WHAT WE, AS A VERY LARGE GROUP of AT LEAST 300,000 SHOULD BE DOING!
- December 11, 2017 at 11:25 am
Thank you for fighting for all of the victims.
- December 11, 2017 at 2:55 pm
Having Wormser on the panel was equivalent to having Harvey Weinstein on a panel looking into sexual assault and harassment in the workplace.
Maybe there is hope yet.
- December 11, 2017 at 6:17 pm
It’s about time! After 20yrs. of suffering with pain, encephalitis, brain fog, sweating, blurred vision, exhaustion, POTTS and being told I am imagining things or depressed the CDC’s corruption is finally being addressed.
I did everything right. I called my MD when I found the tick and was told I had to have a rash in order to get treatment. Within months I became very sick and finally diagnosed with Lyme. It was too late.
During The last 20 yrs. I have been consistently humiliated by western medicine MD’s and thought to be losing my grip mentally. I have spent my savings, my retirement, and money from the sale of my home, along with whatever I could earn in order to obtain many types of treatments. Some really helped but only temporarily. I have had numerous lumbar punctures, electromagnetics, picc lines using a treatment costing $500/wk., herbal mixtures and tons of supplements. I have seen 47 MDs. and 39 practiceoners of all types.
At this point I have lost most of my friends and my business. People don’t understand why you need to cancel plans or meetings when you have a disease that can be easily gotten rid of with 3 wks. of doxycycline. People become uncomfortable when you can’t find your words or get lost in your own neighborhood. When lyme becomes too much to bear due to something as simple as a weather change we disappear to our beds until it passes only to be told how we don’t look sick.
I am blessed to be living in a condo my daughter bought for me and working part-time for a dear friend. Otherwise, I would be in a box somewhere on the streets of Baltimore or dead.
I had a beautiful life and could have maintained it had I been treated properly when the tick was discovered. I am sure my story is similar to lots of my fellow Lymies. The CDC is to blame for all of it. There is not enough money to make up for the suffering they have caused. I want to do whatever I can to see the CDC taken to task for their corruption and neglect. They have destroyed so many lives.
- December 16, 2017 at 2:44 pm
I was bit in 2001 in Michigan and was not diagnosed until 2009 when I moved to Maryland. This has been the worst ordeal of my entire life. I was treated like dirt by doctors who ruined my health by treatijg me for everything but Lyme. I was on antibitoics for four years, oral and IV. I almost died three times. Then I developed lyme disease induced encephalitis and my doctor died form Lyme. I spent 200k trying trying to get well. It affected my heart, my thyroid, my adrenals. I have babesia still and underwent organic chemotherapy. I lost my marriage, my job, my savings trying to pay for my treatment. I lost my friends who thought I was crazy. I almost lost my sanity. I suffer still from debiltaing symptoms. I’ve had four surgues and have plates and screws in my feet and back, and two surgeries on my neck, I wish I could join a lawsuit becasue my life was taken away. I lost my mind,and I had amazing insurance that wouldn;t pay a dime because “there’s NO such thing as chroinic lyme disease.” I see five different doctors a month for meds and care and pay CASH for most of it. I have to live off other people. I’m homeless, don;t have a car, and depend on my friend to care for me. I’m trying to declare disability and that will be a long road.I owned a business I had to give up, I’m in it name only. The memory loss, hallucinations, joint and bone pain, all the medications I have to take, brain fog and acute pain. Poeple don’t realize this is an international pandemic and doctors ego’s and money are all in the middle of it. They can get a vaccine for animals, but they can’t do anything for a diseae that rendered me helpless, is sexually transmitted and give children birth defects. I have felt helpless, hopeless, and disgusted with the medical community and the CDC. I want my lfie back.
- December 16, 2017 at 6:25 pm
Mary Beth, thank you so much for everything you have done and continue to do in the media to keep this ongoing disaster in public view. After decades of observing very little progress, I finally feel as though we patients are seeing a little acceleration in the right direction. Over the last three decades, this is exactly the lawsuit I always wished I had the time and money to bring as I and my family, and obviously so many other families, have suffered unnecessarily.
- December 17, 2017 at 2:54 pm
We live in KS how do we get in on the lawsuit . My daughter saw infectious disease dr. In salina ks….we showed him her lab results where she tested positive for Lyme n RMSF…he tested her for both hep’s and hiv…WHAT A SLAP IN THE FACE !!!! of course after coming bk NEGATIVE he referred my daughter bk to primary dr. SOOO yr later after dropping out of nursing school due to being so sick n literally in bed for a year HERE WE ARE WORSE! I’M BEYOND PISSED OVER THE CONTROVERSY OF THIS EVIL DISEASE. She has lost so much weight it takes all her energy to brush her teeth etc. Then she hurries bk to bed!! Please we want to be a part of lawsuit due to drs. Not going out of the box and following the oath to” listen to their patients and sypmtoms….MY DAUGHTERS LIFE IS ON THE LINE! ! And so far a year of her life wasted n who knows how much longer!! Like all others I’m a shattered mom who wants justice for my daughter. I’m not so much interested in a pay out….I want to call these drs. Out n let them know what has happened to her life. If jurisdiction is an issue please direct me to an attorney that would gladly take our case .
- December 17, 2017 at 10:19 pm
My 22 year old daughter has been battling Lyme for over 10 years now. It has gone to her brain and she’s mute. Some doctors try to say it psychological./schizophrenia.
- December 19, 2017 at 9:44 am
I spent 5 years fighting for my workers compensation rights as a lineworker in the state of CT, lost that case and an appeal even though I had testimony from Dr. Brian Fallon and Dr. Steven Phillips as to my chronic lyme status. 1999 it began in the courts. I had long term disability insurance at the time with progressive Insurance Co. They said that I had a mental disability which there policy did not cover so for the last 25 years I’ve only had SSD to live on and pay for Doctors who do not take insurance payments. I can’t even tell you the amount of money I have spent trying to stay well. If I can get involved in this lawsuit I will gladly turn over my case files!!
- December 20, 2017 at 4:23 am
My name is Deborah Lehan. I have written many times and I am a part of the Lyme data. I could be Robin Reich, the woman who wrote her email as noted here. I was/ diagnosed with Lyme and babesiosis in 1998, when I was 49 years old. My life, and all of its opportunities as I knew them, ceased- and I have spent the last 19 years fighting all of the symptoms of chronic Lyme.
If we had MS or lupus, illnesses with similar symptoms to chronic Lyme, support over the years would be plentiful, people would “understand”, insurance would support our care.
Instead, we have been ridiculed and left with no insurance coverage for an illness whose symptoms are debilitating physically, cognitively, and emotionally.
I am available in any way to support a lawsuit, become involved further with
a task force… anything to help.
- December 21, 2017 at 7:16 am
I hope this litigation opens the IDSA to class action lawsuits, Bob Morgan RN
- December 22, 2017 at 11:41 am
I would like to be in on lawsuit. My daughter saw infectious disease dr. Last summer we took her lab results that showed positive for both lyme and rmsf. He checked her for both heps n hiv…WHAT A SLAP IN THE FACE…of course results were negative then he just referred her bm to family Dr. She was just told yesterday by a family Dr …dr. buck in salina KS that the damage is done now it’s a chronic illness . Why have infectious disease drs. When they can pick n choose what disease they want to treat? ? And ruin a young ladies life! !
- December 25, 2017 at 7:08 am
my mothers entire life was ruined by lyme. doctors called it a brain and palate cancer.
i inherited lyme and doctors are uncaring imbeciles…my entire life has been about that hidden disease.
i have had help researching…to make a long story short…i signed the petition to get that idiot off the board…now i want to sue and get some money to pay for meds and survive lyme. borreleosis. much anger, despair and losses.
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