Yes, I am still around and fighting Lyme Disease

Hello everyone, I bet all of you thought I had left the planet. I apologize for not keeping up the blog the last year. Both my wife and I have had many health problems this last year. Much is happening in the Lyme world. Lyme disease is getting more and more publicity in the media. I will try harder to post relevant articles relating to new research that is being done as well as interesting stories of many of our friends who are also fighting Lyme disease. My wife has been diagnosed with Sarcoidosis. We didn't know what it was, but in doing research, it has also been loinked to Lyme disease. I hope to post some articles that will help us understand this disease. If any of you are familiar with Sarcoidosis please don't hesitate to tell us your experiences and how you are dealing with it. Be well, Richard

Is your Lyme treatment making you well?

Dr Liegner's Speech May 10, Lyme Protest

Hi everyone,

Please click on this link and read this speech. It is important that all of us stand up for treatments of Chronic Lyme Disease. I am pleased to see these public protests and their efforts to help all of us who suffer from this disease.Please take the time to read it! Bravo to to this good doctor!


Be well,
Richard




http://lymedisease.org/news/lyme_disease_views/leigner-nyc-lyme-rally.html?utm_source=New+TLT&utm_campaign=Conference+TLT&utm_medium=email

Herxheimer Reactions- Just awful

http://www.treatlyme.net/articles/2012/1/12/herxheimer-die-off-reaction-inflammation-run-amok.html


I have posted this link on the Herxheimer Die-Off Reaction.  Both my wife and I are being treated with Flagyl and another antibiotic and we are "herxing badly again". The aches and fatigue can be terrible. I am taking some supplements but I am going to try a few new ones. I would be grateful hearing from any of you that have had success treating this.

Be well,
Richard

Another denial story concerning Rocephin Treatment

The following is from my friend Rick LaFerierre at Lymeinfo.net. The article is authored by Steve Israel from the Times Herald 

in Middletown N.Y

Begin Quote

Nothing we can do' for Lyme disease as costly treatment option denied
Some question chronic illness
By Steve Israel, Times Herald-Record, Middletown, New York

April 28, 2013
http://www.recordonline.com/apps/pbcs.dll/article?AID=%2F20130428%2FNEWS%2F130429677
or http://goo.gl/xUOqN

Scores of local victims of a disease they say makes them so 
weak they can't drive, think clearly or make tea without 
laying down are being denied insurance payments for 
treatment of that disease.

This is despite the fact that the antibiotic Rocephin 
alleviates the symptoms of Lyme disease, say many patients 
who have used it and doctors and nurses who have treated 
them with it.

So in order to get the treatment for more than the 28 days 
allowed by many companies - or in some cases, to get it at 
all - victims like Kristin Raucci of Pine Bush, Scott Owens 
of Kerhonkson and Doreen Peone of Saugerties must pay 
hundreds, if not thousands, of dollars per month, often 
going broke or even, in the case of Owens, losing a business 
in the process.

Full story and comments: http://goo.gl/xUOqN

Letters:
http://services.hudsonvalley.com/reader-services/submissions/letter-to-editor/

End Quote

Evidence for Chronic Lyme Disease- A must read

Hi Everyone,

      Please go to this link below and read this report. For those of us with chronic Lyme disease it is yet more evidence that long term antibiotic and other aggressive treatments must be used to cure this disease. Also to the insurance companies who are denying treatment for intravenous Rocephin, you also might want to read this. Your determination that it is an experimental treatment, is very much unsubstantiated. I speak to United Health Care and others who are using this ridiculous idea to decline payment for such treatments. When are you and the CDC going to stop fighting treatments that are working, at least a little bit, in some cases, a whole lot. This is the kind of study that will prove to be very beneficial to this on-going argument concerning chronic Lyme Disease.

Be well,
Richard



http://www.hoajonline.com/journals/pdf/2052-5958-1-2.pdf

Lyme Disease Survey Reveals Much

 

Hi everyone,

 

   I have copied this article from my friends at Lymedisease.org. This organization is doing a fabulous job for advocasy and education about and for Lyme Disease. This article was written by Lorraine Johnson, who is the CEO of the organization. I encourage all of you to participate in all of their surveys. They have done much to educate the public from these surveys.

 

My wife has finally been diagnosed with Lyme disease and has started an aggresive oral antibiotic treatment. Yes, the disease can be passed through marriage partners. Because we didn't know for years that I had Lyme disease, we had taken no precautions. For about five years now, her health problems have been numerous. Her primary care physician finally agreed to treat her for it, even though she(the doctor) still maintains that she doensn't believe in "chronic" Lyme disease. The doctor questions that since the spirochete in Lyme is very similar to the Syphilis spirochete, why we shouldn't be able effectively, like we do Syphilis. I think that is a very good question, don't you?

 

Be well,

Richard

 

 

 

Begin article

In 2009 prior to the IDSA hearing, CALDA 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. Today, the results of this survey were published in Health Policy in a study by Johnson, Aylward and Stricker. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues. This survey focused on 2,424 respondents whose clinical diagnosis was supported by positive test results. The study examines problems with access to healthcare and burden of illness, and it found that although patients with Lyme disease suffered a substantial burden of illness, they had significant barriers to healthcare access. Specifically, patients with Lyme disease had difficulty obtaining diagnosis and treatment for their illness, traveled great distances to receive healthcare, were turned down for health insurance based on their illness, and had difficulty receiving care at local hospitals.

The burden of illness of these patients was substantial: Roughly 26% had been on disability, with a majority receiving support for more than 2 years. Over half had visited an emergency room as a result of their illness, 15% had done so three to five times, and 9% had done so six or more times. These findings indicate that Lyme patients have significant delays in diagnosis and that there is a critical need for healthcare reform in order to reduce the burden of illness and improve access to medical care for Lyme disease.
The study concludes:
“An influential medical society considers Lyme disease to be “rare” and has issued restrictive treatment guidelines. Our study raises concerns that these restrictions lead to delayed and inadequate treatment of patients with Lyme disease, resulting in concomitant reductions in health benefits and increases in economic costs. Our findings therefore indicate that there is substantial need for reform of the healthcare approach to Lyme disease in the United States.”
Access to healthcare:
More than half of patients saw 7 or more physicians to obtain a diagnosis; over a third saw 10 or more physicians.
Nearly half of these Lyme patients had traveled over 50 miles to receive healthcare; 30% had traveled more than 100 miles; and 9% had traveled over 500 miles.(Travel distances of 30 miles or more are considered to impose a high healthcare access burden on a patient.)
Roughly 40% had sought services at their local hospital, and approximately 82% of these Lyme patients had difficulty obtaining care.
Of those who applied for health insurance after being diagnosed with Lyme disease 40% were denied coverage because of their prior diagnosis.
13% of those with medical insurance were told to see an infectious disease specialist in order to obtain medical reimbursement for medical costs.
31% of those responding had applied for disability insurance and 39% of these had been denied benefits based on failure to conform to Infectious Diseases Society of America (IDSA) guidelines.
Burden of Illness:
25% had received disability or public support, with a majority receiving support for two or more years; 37% for more than 5 years.
39% of those who applied for disability benefits were denied support based on IDSA guidelines.
Study Population:
Patients had been ill a long time. 95% had had Lyme disease for more than 2 years.
95% had received at least 21 days of antibiotics and reported chronic symptoms of 6 months or more.
Centers for Disease Control (CDC) versus other testing results: Patients were clinically diagnosed with supporting lab tests. The diagnosis of 1,000 patients was confirmed by CDC two-tiered criteria or CDC Western blot criteria, while the diagnosis of 1,424 patients was confirmed by other lab methods (including positive PCR, cerebrospinal fluid tests, or positive ELISA or Western blots interpreted using non-CDC criteria). Aside from delay in diagnosis, there were no significant differences in the patients whose diagnosis was confirmed with tests meeting CDC surveillance criteria and those whose supporting tests did not meet CDC criteria. Those without CDC-based positive tests saw more physicians before they were diagnosed.
The abstract of the article is available here.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is CALDA’s Chief Executive Officer. Contact her at lbjohnson@lymedisease.org. End Article