Bloody Lymey

A Blog About Living with Lyme Disease

Class Action Lawsuit Part II – Lyme Disease

I posted a blog about a class action lawsuit and declined to give my opinion on how I feel about lawsuits and stated I tend to be on the fence about them. Here’s the original:

(If it fails, copy and paste: https://bloodylymey.wordpress.com/2012/06/03/class-action-lawsuit-lyme-disease-chronic-lyme-disease/)

I received an in depth comment on that entry that I feel compelled to share because …. it’s so compelling! I hope this is alright with her. Since it was not in a private message but posted publicly, I’m posting this with confidence that I am doing the right thing and so that her compelling argument will reach a broader audience (hopefully). Because I don’t want to chance that no one will read it or will miss it, I must share it with you.

Here it is:

“Hi Becky,

I understand your opinion that you are on the fence about the idea of any type of lawsuit. I myself have been on the fence for several years. I have also been completely exhausted from having ‘lyme soup’ (chronic lyme w/ neurological dysfunction, and probably all of the other tick borne illnesses generally associated w/ ticks) and one day, I was talking to my dad (who thinks that all of this is whooey and that I should just walk it off) and I realized that while everyone is busy talking about the politics of lyme (and in my opinion covering their own butts), the patients have been lost in the shuffle.

2012 is already a horrendous tick season and it is only going to get worse as the summer progresses out here on the east end of long island in NY. We are in a location where Lyme is endemic and even have doctors in the area that worked on the original classification of Lyme diesease. We were fortunate enough until a few years ago to have Dr. J Burrascano right here in our back yard. Heck, Long Island even has a Borrelia species specific to our area.

There have been two major reports out in the past year

-1) one stating that the lyme spirochete does go into a cyst form and hides in the lymphatic system of humans and

2) there was a study published in January 2012 that states unequivically that “These results demonstrate that B. burgdorferi can withstand antibiotic treatment, administered post-dissemination, in a primate host. Though B. burgdorferi is not known to possess resistance mechanisms and is susceptible to the standard antibiotics (doxycycline, ceftriaxone) in vitro, it appears to become tolerant post-dissemination in the primate host. ”

I have spent almost 10 years searching for answers to my health problems and have been diagnosed AND TREATED for Lupus, Multiple Sclerosis, Fibromyalgia, Chronic Fatigue and yes, of course, I was told to seek psychological help. Last year, I was told by my neurologist (after I had begun EFFECTIVE treatment for Lyme and Babesia) that there was no way that it was working because chronic lyme DOES NOT EXIST. My local primary care physician told me that a week of doxy should take care of the problem every one of the 6 times that I tested positive for lyme (the first time being in 1982 as a child). I have spent countless hours in waiting rooms seeing every kind of doctor under the sun. I have spent tens of thousands of dollars over the past ten years in co-pays, prescriptions, lost work time etc and I finally spent another $6,500 last year to go out of the country to buy the meds that I need to even begin to get well. I had to sell my business because I physically could not work any more. I have been unable to work for nearly 3 years so our household income has declined drastically . And none of this even touches on the idea of pain and suffering.

I did not change the laws about medical research that now allows researchers to patent their information (even if they use my tax dollars to fund their research) nor did I ignore the fact that Lyme Disease has been in existence and treated in Europe for more than 120 years as of 1992.

I did not claim that ELSA test was accurate.

I did not patent two of the markers that are used on the Western Blot Test (you know the one that is supposed to be definitive) used to identify the lyme antibodies and cause thousands upon thousands of people to told they were not positive for the lyme antibodies when they most likely were.

I did not make money off of the patenting of those two markers for the LymeRX ‘vaccine’. I am not the one who still insists that the Western Blot is the way to confirm Lyme when it has been shown to be incorrect 72% of the time. I am not the one who writes the guidelines (but I am one of the ones who has had to beg to get them to even be reviewed) for the insurance companies.

I am also not a physician who lives and works in an endemic area who has little or no knowledge or training regarding tick borne illnesses. I am also not one of the doctors coming out of the intern/residency program of Southampton Hospital this year who has been trained that Lyme disease is only an acute infection but the ‘locals’ constantly complain about it so, and I quote ‘humor them’.

I did none of these things. I was bitten by an infected tick. I have no idea when my infection truly started because as I mentioned I had my first positive test beck in 1982 and have been treated 6 times in the past 15 years.

I have almost lost everything and I am one of the lucky ones and all of this could have been prevented by a couple hundred dollars of medications at the start. I will never get back back all that I have lost physically, emotionally or financially. I am not even trying to. However, in working towards this class action lawsuit, I hope to hold the people involved somewhat accountable but more importantly, someone has got to make doctors, insurance companies and our government responsible for making sure that the physicians that are licensed by the state are fully qualified and have the ability to treat Lyme and the other generally co-morbid infections properly. All the Best, Joy Ganss-Brady, East End Lyme Disease Awareness Council http://www.lymeliveshere.org

Special thanks to Joy for taking the time to educate me and for helping me see this in a new light – and for writing with passion for the cause and respect for my being on the fence. Best wishes to you.

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Tick Removal, Urban Legends and That …. That Soap Thing.

There is an email going around, a thingy on facebook going around, verbals going around …….. the soap suggestion is a BAD one. Debunked by Snopes.com and UrbanLegends.com. Oh, and pretty much anyone in the scientific community for that matter.

The message reads in part that a school nurse has written this and it’s good enough to share! This person heard from a school nurse who heard from a pediatrician (mmmmmmmmmmmm………)

It continues:

“This is great, because it works in those places where it’s some times difficult to get to with tweezers: between toes, in the middle of a head full of dark hair, etc.

Apply a glob of liquid soap to a cotton ball.. Cover the tick with the soap-soaked cotton ball and swab it for a few seconds (15-20), the tick will come out on its own and be stuck to the cotton ball when you lift it away. This technique has worked every time I’ve used it (and that was frequently), and it’s much less traumatic for the patient and easier for me. Unless someone is allergic to soap, I can’t see that this would be damaging in any way. I even had my doctor’s wife call me for advice because she had one stuck to her back and she couldn’t reach it with tweezers. She used this method and immediately called me back to say, “It worked!”

Please pass on. Everyone needs this helpful hint.”

PLEASE don’t pass it on. It is NOT a helpful hint. It sounds so easy and feasible, but it could make the tick regurgitate and this will put you at a greater risk for Lyme. You DON’T want that.

Here’s a debunking article, blow by blow:

If the link fails, then copy and paste: http://www.snopes.com/oldwives/tick.asp

Another helpful site that debunks it every bit as intelligently:

If the link fails, then copy and paste: http://www.hoax-slayer.com/liquid-soap-tick-removal.shtml

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Class Action Lawsuit – Lyme Disease / Chronic Lyme Disease

Here is a link to a note from Lyme Lives Here on Facebook:

If it doesn’t work, copy and paste: https://www.facebook.com/notes/lyme-lives-here/calling-all-chronic-lyme-patients-it-is-time-to-act/414701381903938

This is what it says:

“If you are a chronic lyme or other tick borne illness patient, please contact me regarding filing a federal lawsuit against the American Medical Association and the CDC as well as the major insurance companies who continue to deny that chronic lyme exists. We are currently looking to reach the number of complainants needed to make it a class action suit. We will be seeking damages for out of pocket expenses, loss of income, pain and suffering as well as compensation for future damages due to symptoms that will never be able to be resolved due to lack of treatment. The goal is simply to make it impossible to not treat a lyme or other tick born illness patients. Additional details provided in one to one confidential communications. ”

I am neither endorsing this nor discouraging it. I’m just here to relay the information and let you decide for yourself.

I have mixed feelings about it – an equal list of pros and cons (but those are my issues and not “facts”). But I’m just passing it on. 🙂

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There IS an S in Lyme Disease …. (Two of them in the SECOND word)

This is a pet peeve of mine. 

The correct spelling is LYME Disease.  NOT Lyme’s Disease and not Lymes Disease.  The name is neither possessive nor plural.  It is named for a town – singular form –  in Connecticut where it was discovered:  “Old Lyme, Connecticut.”  Because it is not named after a person (IE  Sjogren’s Syndrome, etc.), it has no apostrophe s.

Discovered in the ’70’s when hoardes of children were presenting in pediatrician’s offices with what was thought to be rheumatoid arthritis (in this namesake town), the disease was something of an epidemic confined to this one mysterious region (including neighboring towns).  The town is a coastal town abutting the Nehantic State Forest.   Old Lyme was named for a town in England – Lyme, Regis. 

But this upsurge in symptoms is not “new.”  First studied in 1883 Poland, there is documentation that a Dr. Buchwald  treated a man for a degenerative skin condition.  In the early 1900’s in Sweden, another physician  – a dermatologist – studied and treated a woman who had a “spiraling rash” after being bitten by “a sheep tick.” (The medical atmosphere today doesn’t seem so bad, now, does it?  Can you imagine seeing a dermatologist and having nothing else done for you and no one anticipating any other problems? Well?  Perhaps you CAN, unfortunately.)

In the 1920’s, a pair of doctors treated a man for “neurological” symptoms following such dermatitis and he was treated for meningitis.   In 1948 – back in Sweden – a dermatologist thought the unusual rashes were caused by “spirocetes.”  Gradually – piece by painstaking piece – more and more symptoms were being attributed to the disease and it was nicknamed “Sheep Tick Fever.” 

According to Wikipedia (who I detest quoting since so much of it could be made up – but this seems feasible):

Before 1976, elements of B. burgdorferi sensu lato infection were called or known as tick-borne meningopolyneuritis, Garin-Bujadoux syndrome, Bannwarth syndrome, Afzelius’ disease,[1] Montauk Knee or sheep tick fever. Since 1976 the disease is most often referred to as Lyme disease,[204][205] Lyme borreliosis or simply borreliosis.

So, brothers and sisters!  Let’s drop the S – just as we dropped the blame from sheep ticks, just like we stopped calling it “tick-borne meningopolyneuritis.”  Drop the S.  Drop the apostrophe.   

I don’t like being a “grammar nazi,” but if you are trying to research Lyme Disease on google, you better spell it right!  You don’t want a source telling you how to treat it if they can’t spell it!

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FREE “Under Our Skin” Showing 5/19/12 – Lenox MA

In the evening on Saturday come join us for an educational community event!!

A Free Public Screening of the Award Winning Lyme Disease Documentary “Under Our Skin” will be taking place at the Lenox Library starting at 5pm on Saturday, May 19th, 2012.

A Q and A will follow the film with help from Library Executive Director Sharon Hawkes and there will be educational materials for attendees to take home.

For those of you who have seen the film, please let anyone you think might benefit from watching it know about this event.

Thank you and have a wonderful weekend!!

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Under Our Skin: FREE Showing in Williamstown, MA on 5/12/12

In the early afternoon tomorrow come join us for an educational community event!!

Lyme Disease Documentary, A Free Public Screening of Award Winning Film “Under Our Skin” will be taking place at the Milne Public Library in Williamstown, MA starting at Noon on Saturday, May 12, 2012. A Q and A will follow the film and there will be educational materials for attendees to take home.

For those of you who have already seen the film, please do let anyone know that might be interested. Thank you!!

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Lyme Alliance of the Berkshires Goings-On / Under Our Skin & Speakers

If anyone lives in or near Berkshire County in Massachusetts (bordered by Southern Vermont, Northern Connecticut and Eastern New York), then it sounds like there may be some happenings that may interest you. This is the contents of my most recent Lyme Alliance of the Berkshires newsletter. Kenneth Mercure encourages us to spread the word!

“I wanted to let everyone know that the Lyme Alliance of the Berkshires is going to be hosting a screening of Under Our Skin at the Milne Library in Williamstown, MA on Saturday, May 12th, 2012 starting at 12 pm.

L.A.B. will also be hosting a screening of Under Our Skin at the Lenox Library on Saturday, May 19th, 2012 starting at 5pm.

A Q & A will follow both screenings.

In June 2012, Lyme Alliance of the Berkshires will be hosting guest speaker Robert Giguere, Director of Sales for IGeneX, Inc. at the Lee Library for his educational powerpoint presentation “Lyme Disease and Co-Infections: Signs, Symptoms and Testing Techniques” starting at 5:30 pm on Tuesday, June 26th, 2012. A Q & A will follow his presentation.

Please spread the word!!”

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Public Forum for Lyme: Saratoga Springs, NY May 21st

There is a public forum with multiple topics having to do with Lyme Disease. It’s in Saratoga Springs, NY. If you’re anywhere near the area, it sounds like an informative and productive forum. I would love to go – will have to see if I’m too tired [wink].

The following is a newsletter I received from Kenneth Mercure (of Lyme Alliance in the Berkshires):

“”Congressman Gibson is pleased to announce that he will be hosting a unique public forum focusing on exploring solutions to the myriad of challenges relating to Lyme disease and other tick-borne diseases.”

May 21, 2012 at Skidmore College in Saratoga Springs, New York.

Presenters include:

Pamela Weintraub, renowned author of Cure Unknown, and Executive Editor of Discover Magazine, will be the keynote speaker for this event. Pam will speak to the multi-dimensional nature of this extraordinary subject, from the patients to the politics, from the science to suppositions that define this stunning medical debacle.

Dr. Richard Horowitz, internationally renowned physician and consultant in the field of Lyme and tick-borne diseases has been working with patients for over twenty years. He has seen the evolution of the diseases from the clinical perspective, and will present a proposal for a paradigm-shifting approach to the diseases that could encourage new perspectives, new synergies, and new research in this difficult subject.

Lorraine Johnson, one of the best known and most highly regarded advocates for Lyme patients, is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 30 peer-reviewed articles on this topic. She is the Chief Executive Officer of LymeDisease.org, and is a director and an officer of the International Lyme and Associated Diseases Society. She will speak on the Burden of Illness, an in-depth study of what the costs are to people who have Lyme and other tick-borne diseases and to their communities, and she will recommend research paths forward to address these issues.

Dr. Daniel Cameron, former President of the International Lyme and Associated Diseases Society, an active clinical physician, researcher, and advocate for improved Lyme policy in the US, will speak to the extreme difficulties the current medical-political environment imposes on physicians who aggressively treat Lyme Disease.

Holly Ahern, Associate Professor of Microbiology at SUNY Adirondack, will present the findings of her 2011 research study on the number of cases of Lyme disease that go uncounted in our “official” statistics. Most cases of Lyme disease are NOT reported, and this number of “invisible” cases, will ultimately have a significant impact on all our communities.

Dr. David Leiby, head of Transmissable Diseases at the American Red Cross, will speak on the concerning and challenging issue of Babesiosis now bering found in the blood supply.

Dr. Ahmed Kilani, President of Clongen Labs, will discuss new laboratory methods to enhance the detection sensitivity in the testing process.

Dr. Kenneth Liegner, is a Board Certified Internist with additional training in Pathology and Critical Care Medicine. He has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988. Dr. Liegner will present his ideas for a comprehensive plan for dealing with the spectrum of problems that are the “Lyme issue” as we move into the future.

Dr. Edward Breitschwerdt, DVM, will discuss the emerging challenges of Bartonella, a co-infection that is being observed with increasing frequency.

For more information and/or to pre-register go to:

http://www.lymenext.org

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