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

LDA Lyme Conference June 1, 2013

Hi everyone,
I hope many of you will register to attend this conference sponsored by the Lyme Disease Association. The conference is designed for scientists and doctors, but the public is also invited to attend. Hopefully a lot of new information will result from this conference.

Thanks and be well,
Richard










LDA Lyme Conference: Register Now
Lyme Disease Association, Inc.

March 18, 2013

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=1122:lda-lyme-conference-register-now&catid=204:lda-conf-2013&Itemid=711
or http://tinyurl.com/c7svqd2

The Lyme Disease Association,Inc. announces its 14th annual
scientific conference, Lyme & Other Tick-Borne Diseases:
Science, Research & Myth. The Conference will be held at
the University of Minnesota, St. Paul, MN, on Saturday June
1, 2013, at 8:00am-5pm with a networking reception to
follow, and on Sunday June 2, 2013, 8am-12 noon.

Brian A. Fallon, MD, Columbia University College of
Physicians & Surgeons and RW (Bill) Stich, PhD, University
of Missouri, are conference co-chairs. Betty Maloney, MD,
of Minnesota, also serves on the Planning Committee with the
co-chairs.

The conference is designed for physicians and scientists,
but the public is invited to register to attend. See the
agenda for faculty and topics. Continue to check this
website for future registration, additional information
about the conference, and exhibitor opportunities.

Hotel block information will follow in a few weeks.

Conference Agenda:
http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=1111:2013-ldacolumbia-conference-agenda&catid=204:lda-conf-2013&Itemid=698
or http://tinyurl.com/d2vgqyu

Faculty Biographies:
http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=1106:2013-conference-speaker-biographies&catid=204:lda-conf-2013&Itemid=706
or http://tinyurl.com/d5ve37e

Registration:
http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=1108&Itemid=713
or http://tinyurl.com/d6shh8u

- -

"The University of Minnesota is not endorsing or sponsoring
the activities conducted by Lyme Disease Association, Inc.
on the University of Minnesota campus. The relationship
between the University of Minnesota is solely that of
licensor and licensee." Application for CME credit has been
filed with the American Academy of Family Physicians.
Determination of credit is pending.

Source: http://tinyurl.com/c7svqd2

Lyme Disease Association, Inc.
PO Box 1438, Jackson, NJ 08527
information line : 888-366-6611 begin_of_the_skype_highlighting 888-366-6611 FREE end_of_the_skype_highlighting fax: 732-938-7215 begin_of_the_skype_highlighting 732-938-7215 FREE end_of_the_skype_highlighting
http://www.lymediseaseassociation.org/
email: LDA@LymeDiseaseAssociation.org

Lone Star Ticks

This is from my friend Rick Laferriere in an e-mail sent to me.

Journal of Medical Entomology(2013), 50(2):244

http://dx.doi.org/10.1603/ME12207 We need to know the enemy(ticks) Be well, Richard

Begin Article:

Lone star tick (Acari: Ixodidae) occurrence in Nebraska:
historical and current perspectives.
Cortinas R, Spomer S.
Journal of Medical Entomology, 2013 Mar;50(2):244-51.



Abstract

In 2010 and 2011, field collections were undertaken to
determine the geographic range of the lone star tick,
Amblyomma americanum (L.), in Nebraska In addition, tick
identifications from submissions by the general public
dating to 1911 were examined. Consistent lone star tick
identifications from extreme southeast Nebraska began in 1987.

Specimens have been identified from 27 counties, making lone
star ticks the second most frequently and second most widely
reported tick in the state after Dermacentor variabilis
(Say). Surveys conducted in 70 sites in 43 counties yielded
2,169 ticks of which 1,035 were lone star ticks. Lone star
ticks were more frequent in the southeast portion of the
state and ticks were found in nine counties from which there
were no known submissions. Life stage peaks observed during
the surveys corresponded with those observed from
submissions. Other ticks, incidental to the study, were also
collected.

Woody plant expansion into the tallgrass prairie,
white-tailed deer (Odocoileus virgianianus L.) and wild
turkey (Meleagris gallopavo L.) population growth, and the
increased frequency of milder winters may be facilitating
lone star tick occurrence in the region. Further studies
will assess lone star tick establishment and disease
pathogen prevalence in the state.

http://dx.doi.org/10.1603/ME12207

Sneaky Lyme Disease Bacteria

Hi everyone,

 

Sorry it has been so long since I have posted on my blog. My Lyme disease has had me down for a number of months now. I also have my wife being treated for it now, as well. I hope to get back to regular posts now. This is a great article from www.gather.news com. Thanks to them and the articles's author Megan Hamilton .

 

How Sneaky Lyme Disease Bacteria Use Manganese to Fool the Immune System

March 24, 2013 01:25 AM EDT

Bacteria, like humans, must eat in order to survive. Also, like humans, they utilize iron and other metals to produce the protein and enzymes that are essential for their survival. Normally, when humans get sick due to these misbehaving bugs, the iron produced by these little naughty no-nos is detected by the immune system, which then swings into action, according to LiveScience.
What does the immune system do?
It puts these troublesome microbes on a very strict diet, meaning no iron whatsoever, starving them out of existence. The immune system does this by inducing the liver to produce a hormone that inhibits iron from being absorbed by the gut and by the bloodstream, according to this article in Science Daily.
However, one species of these nefarious bugs has managed to hoodwink the immune system. In fact, these particular troublemakers don't even have the genes that help to produce the proteins which accumulate iron, according to the article. As the only known organism that exists without utilizing iron, Borrelia burgdorferi, the bacterium that causes Lyme disease instead produces massive amounts of manganese, especially in the areas where it needs to defend itself against the immune system. It uses all that manganese in order to cause Lyme Disease.
Pretty wily for itty-bitty prokaryotic organisms that don't even have brains.
Undoubtedly, most people know by now that Lyme Disease starts with a tick bite.
It has some rather unlovely symptoms, according to LiveScience, including: fever, fatigue, headaches, and rashes. If it isn't treated with the appropriate antibiotics, Lyme Disease can also cause problems for the central nervous system and the cardiovascular system. It's quite amazing that something which can't even be seen with the naked eye can cause so much trouble.
The immune system, like a blood hound with a stuffed up sniffer, doesn't detect the manganese. So from then on, it's party on for Borrelia but a not-so-good time for those now infected with Lyme Disease, a disease that is frequently slow growing and difficult to detect, the article in Science Daily mentions.
Scientists are optimistic that the manganese discovery will open up new options in the treatment of Lyme Disease, said Dr. Valeria Culotta, who is a molecular biologist at the Johns Hopkins University Bloomberg School of Public Health.
"The only therapy for Lyme Disease right now are antibiotics like penicillin, which are effective if the disease is detected early enough," Culotta said in a statement, according to LiveScience. Penicillin attacks Borrelia's cell walls, but the problem is, not all of these critters have cell walls.
Using sophisticated equipment, Culotta and her fellow scientists were able to measure proteins that contained metals all the way down to parts per trillion, LiveScience reported.
"We'd like to find targets inside pathogenic (disease-causing) cells that could thwart their growth," Culotta said.
The next step will be mapping out all the proteins containing metal that inhabit Borrelia. Then the researchers will try to learn how the microbe sucks the manganese in from its surrounding environment, LiveScience reported. The manganese might be the weak link in the bacteria's chain mail, and the researchers can exploit this.
What's the best way to do that?
"The best targets are enzymes that pathogens have, but people do not, so they would kill the pathogens but not harm people," Culotta said, according to LiveScience.
By working for the common good, these scientists may have found a way to beat this nefarious critter at its own game. This is science at it's best.
Lyme Disease distribution map courtesy of Wikimedia Commons