Archive for the ‘Uncategorized’ Category

You’re Not Crazy – You Have Lyme

MyLymeLife_2-62

By Jennifer Crystal

I knew there was something physically wrong with me, but when my blood work came back clean and I didn’t fit into any classic diagnostic box, the nurses decided the symptoms were psychosomatic.

When I first got sick during my sophomore year in college, the nurses at the health center ran the typical “college” tests: mono, strep, pregnancy. The results were negative, so they told me that my fever, low blood sugar reactions, flu-like aches, exhaustion, and pounding headaches were a result of stress. I rested as much as I could, tried meditation and deep-breathing techniques, and dragged myself to class. When my symptoms persisted, I returned to the health center. The nurses told me I was just run down.

But I’d been taking care of myself since that first visit. I was eating better and sleeping more than I had during my freshman year, when I’d stayed up late partying and subsisted primarily on pizza and beer, and yet had still been perfectly healthy. I did burn the candle at both ends, but sophomore year I couldn’t have done so had I wished. I was too tired to do any of my usual activities like running, skiing, and participating on committees. I knew there was something physically wrong with me, but when my blood work came back clean and I didn’t fit into any classic diagnostic box, the nurses decided the symptoms were psychosomatic.

“Maybe you should see someone in counseling about all of this,” one of them said.

At the impressionable age of nineteen, I worried the nurse was right; maybe these symptoms were all in my head.

Ironically, they were in my head, but not as a result of hypochondria or any mental illness. Tick-borne bacteria and parasites were attacking both my body and brain. There were real spirochetes in my head, not psychiatric illnesses. My fevers, body aches, and hypoglycemia were caused by Lyme disease, and two of its co-infections Babesia, and Ehrlichia. But it would be another eight years before a Lyme-Literate Medical Doctor would figure all of that out, and by that time, I would have been told “it’s all in your head” by more people than I can count.

Unfortunately, my plight is all too familiar to patients of late-stage Lyme disease complicated by co-infections. At some point in their journey to recovery, many have been told that they’re crazy, too. And not just by medical practitioners. Sick patients, needing only support and care, also heard this message from family members, friends and co-workers. So common is this write-off of those suffering from unknown ailments that there’s an entire chapter in Denise Lang and Dr. Kenneth Liegner’s book Coping With Lyme Disease titled “I’m Not Crazy, I Have Lyme!” When I first read that chapter after being accurately diagnosed with tick-borne diseases, I wept. I knew exactly what it felt like to be so misunderstood.

I also knew exactly what it meant to feel “crazy” from Lyme. As Lang and Dr. Liegner write,

“…talk to a thousand Lyme patients and you will get a thousand variations of the same story: people who are normally easy going become moody and belligerent; those who are outgoing become lethargic; mood swings cause the breakup of marriages and career relationships; the inability to concentrate results in job losses, plunging grades in school, and accidents; short-term memory loss affects habits and speech; and everywhere there is depression, a loss of self-esteem, and suicidal thoughts from people who have never had a history of such things.”[1]

The important thing to recognize is that these psychological manifestations are secondary to Lyme, not its root cause. At the 2017 International Lyme and Associated Diseases Society conference in Boston, Dr. Phillip DeMio of Ohio, who specializes in pediatric tick-borne illnesses and autism spectrum disorders, emphasized the fact that psychological symptoms of Lyme are not primarily psychiatric. He drew an analogy to head injuries, noting that a person acts strange because of a concussion, in the same way that a person with Lyme disease may exhibit unusual behaviors, but that’s not because either have a pre-existing psychiatric condition.

Mental illness is real, and should be evaluated and treated with respect when it actually is the root cause of a person’s unusual behavior. But a good doctor whose patient presents with a sudden onset of psychological symptoms, without precedent in their medical history, should look for all possible root causes, which could be psychiatric, but are more likely to be tick-borne illness, or some other disease.

No one should be written off as crazy, even those with mental illnesses. The word is pejorative. If you’re experiencing new symptoms, be they physical or psychological, or if you notice behavioral changes in a friend or family member, at least be open to the idea that the root cause might be other than psychological.  In my case, it was tiny spirochetes and parasites put in my system by a microscopic deer-tick. If my college health center nurses had considered tick-borne illnesses from the start my long-term health problems could have been a lot smaller, too.

[1] Lang, Denise and Liegner, Kenneth. Coping With Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment. 3rd ed. New York: Henry Holt and Company, 2004 (70).

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**Comment**

Oh does this hit home…..

I’d like to say this is getting better, but I’d be lying.  College kids are still showing up at support group desperate because their own mothers won’t believe them.

Something has to change, and soon.

Lyme/MSIDS is a systemic infection that when it gets into the brain can cause untold damage – even suicide.

Please support those you know who are infected.  And if you are infected, develop skin of metal and do not let the nay-sayers bring you down.

Support:

https://rawlsmd.com/lyme-support?

https://www.ruschellekhanna.com/onlinetherapy

https://suicidepreventionlifeline.org

 

 

 

 

April 2018 Support Meeting – Dr. Coleman

Our next meeting is Saturday, April 28, 2018 from 2:30-4:30 at Pinney Library.  Our speaker is:

robert-e-coleman-naturopathic-doctor-family-clinic-of-natural-medicine-madison-wi

Robert E. Coleman, Naturopathic Doctor

Dr. Robert E. Coleman, Jr. ND, LMT practices integrative medicine, environmental toxicology, and naturopathic physiatry. He began his life’s journey in Los Angeles, California where his passion for humanity, science, and technological innovation excelled. Dr. Coleman is an accomplished graduate of Bastyr University’s Naturopathic Medical School in Seattle, Washington. He has received advanced training in IV therapies, physical medicine, primary care, and integrated pain management. Dr. Coleman is the president of the Wisconsin Naturopathic Doctors Association (WNDA) and active member of the American Association of Naturopathic Physicians (AANP).
Dr. Coleman has proven himself through exceedingly challenging medical cases. He has collaborates with integrated physicians, surgeons, chiropractors, and other alternative medicine practitioners to reengineer a patient-centered approach to health care. Dr. Coleman continues to establish himself and encourages other primary care trained naturopathic doctors to practice in the state of Wisconsin. He perceives every moment in life to be a learning experience and blessing that he is most often able to incorporate into practice. Dr. Coleman participates in seminars, grand rounds, continuing medical education, webinars, and conferences in order to continuously enrich his clinical knowledge.

 

 

 

 

 

University of Maryland AIDS Expert Named New CDC Director

http://www.baltimoresun.com/health/bs-hs-cdc-director-20180321-story.html

University of Maryland AIDS expert named new CDC director

bs-1521667670-0qdzphhrow-snap-imageDr. Robert Redfield Jr. of the University of Maryland School of Medicine was named the new director of the Centers for Disease Control and Prevention, the federal government’s top public health agency. (Tracey Brown/University of Maryland School of Medicine via AP)
By Andrea K. McDaniels – Contact Reporter
The Baltimore Sun

March 21, 2018

A doctor with the University of Maryland School of Medicine, a longtime AIDS researcher who helped found the school’s prestigious Institute of Human Virology, has been appointed the new head of the U.S. Centers for Disease Control and Prevention.

The appointment of Dr. Robert Redfield Jr., an infectious disease expert, was announced late Wednesday by the U.S. Department of Health & Human Services.

Health Secretary Alex Azar lauded Redfield for his contribution to advancing the understanding of HIV/AIDS. His most recent work was running a treatment center for HIV and hepatitis C patients that Azar said will prepare Redfield for fighting the opioid epidemic, one of the CDC’s most pressing issues.

“Dr. Redfield has dedicated his entire life to promoting public health and providing compassionate care to his patients, and we are proud to welcome him as director of the world’s premier epidemiological agency. Dr. Redfield’s scientific and clinical background is peerless,” Azar said.

 

Redfield was not available for comment. He was also a finalist for CDC head in 2002 under the George W. Bush administration.

His appointment already was being met with criticism from people who said his background was mostly in research and that he lacked public health experience. He was also at the center of an experimental and controversial AIDS vaccine in the 1990s.

Sen. Patty Murray, a Washington Democrat, sent a letter to President Donald J. Trump, raising concerns about Redfield’s appointment that said his controversial positions on issues regarding HIV/AIDS raised questions about his qualifications about the job. Murray, ranking member of the committee that oversees CDC, also criticized his lack of public health experience.

“I believe the CDC Director must first and foremost be a champion of public health and ensure this Administration embraces the science around public health in both its domestic and global work,” Murray wrote. “I am concerned by Dr. Redfield’s lack of public health expertise and his failure to embrace the science underscoring critical public health work, and I urge you to reconsider him as a candidate for CDC Director.”

The Center for Science in the Public Interest also protested the selection of Redfield because of what it says is a history of scientific misconduct. The group said he doesn’t have important relationships with local health departments.

Dr. Peter Lurie, the organization’s president, called the appointment “disastrous.” He noted that Redfield was investigated by the military for scientific misconduct for exaggerating the benefits of a “putative” HIV vaccine. Researcher disputed his findings that the vaccine worked and Congress stopped plans for a large clinical trial. Smaller studies later proved the vaccine ineffective, but the investigation cleared Redfield.

“What one wants in a director of the Centers for Disease Control and Prevention is a scientist of impeccable scientific integrity,” Lurie said in a statement before the announcement, when Redfield was being considered.

Redfield also has supported a variety of policies related to HIV/AIDS that many public health professionals don’t support, including mandatory HIV testing, reporting of positive HIV results to public health authorities without the patient’s consent, and quarantining of HIV-positive individuals in the military, Lurie said.

Redfield suggested those policies in the 1980s and 1990s when researchers were still learning about the disease.

The Trump administration’s previous CDC director, Dr. Brenda Fitzgerald, resigned after questions were raised about conflicts of interests related to some of her financial investments.

Redfield began his career in the late 1970’s at the Walter Reed Army Medical Center and co-founded the Institute on Human Virology at Maryland in 1996. The institute’s patient base grew from 200 patients to more 6,000 in Baltimore and Washington under his tenure. It also has more than 1.3 million patients in African and Caribbean nations.

Dr. Redfield was one of my early collaborators in co-discovering HIV as the cause of AIDS and demonstrating heterosexual transmission of AIDS,” said Dr. Robert C. Gallo, also co-founder of the human virology institute, in a statement. “He is a dedicated and compassionate physician who truly cares about his patients and is deeply committed to ensuring patients receive the highest quality of care possible. Dr. Redfield has served his country well, and consistently demonstrates strong public health instincts that are grounded in science and clinical medicine.”

Dr. E. Albert Reece, dean of the University of Maryland School of Medicine, said that Redfield is “eminently qualified for this critical position.”

“He has made a lifelong commitment to advancing biomedical research and human health through discovery-based medicine,” Reece said in a statement. “…. he has been one of the most accomplished scientists and public health advocates in the nation in increasing our understanding of the prevention and treatment of infectious disease. His significant contributions have led to the treatment of more than a million HIV patients by the Institute in the U.S. and around the world.”

Baltimore Sun reporter Meredith Cohn contributed to this article.

amcdaniels@baltsun.com

twitter.com/ankwalker

 

 

 

 

LD in the U.S. – Looking for Ways to Cut the Gordian Knot

http://onlinelibrary.wiley.com/doi/10.1111/zph.12448/abstract;jsessionid=4442DBFE52618A3BD9A1C7356CB044C6.f03t03  OPINION

Lyme disease surveillance in the United States: Looking for ways to cut the Gordian knot

Authors:  M. L. Cartter, R. Lynfield, K. A. Feldman, S. A. Hook, A. F. Hinckley
First published: 12 February 2018
DOI: 10.1111/zph.12448

Disclaimer: The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Summary

Current surveillance methods have been useful to document geographic expansion of Lyme disease in the United States and to monitor the increasing incidence of this major public health problem. Nevertheless, these approaches are resource-intensive, generate results that are difficult to compare across jurisdictions, and measure less than the total burden of disease. By adopting more efficient methods, resources could be diverted instead to education of at-risk populations and new approaches to prevention. In this special issue of Zoonoses and Public Health, seven articles are presented that either evaluate traditional Lyme disease surveillance methods or explore alternatives that have the potential to be less costly, more reliable, and sustainable. Twenty-five years have passed since Lyme disease became a notifiable condition – it is time to reevaluate the purpose and goals of national surveillance.

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**Comment**

Yes, please!  Cut the Gordian Knot!  Better yet, take an ax to the thing!

http://www.history.com/news/ask-history/what-was-the-gordian-knot

Thanks to the enduring popularity of the Alexander fable, the phrase “Gordian knot” has entered the lexicon as shorthand for an intricate or intractable obstacle. One of its earliest appearances came in the Shakespeare play Henry V, where the titular character is praised for his ability to “unloose” the Gordian knots of politics. Likewise, the saying “cutting the Gordian knot” is now commonly used to describe a creative or decisive solution to a seemingly insurmountable problem.

 

 

 

February Support Group Meeting Reminder

Don’t forget our support group meeting this Saturday:  https://madisonarealymesupportgroup.com/2018/02/01/february-2018-support-group-meeting/

See you there!

 

 

 

 

February 2018 Support Group Meeting

winter-14

Our next support group meeting will be Saturday, February 17, from 2:30-4:30pm at the East Madison Police Station at 809 S Thompson Dr. Madison, WI 53716.

It will be a regular support meeting where we can share our progress and ask questions. Please bring whatever’s working, any books you’ve gleaned from, and all your questions.

See you there!

French Lyme Patients Filing Criminal Complaints

https://sites.google.com/site/marylandlyme/legal-cases/france–300-patients-file-suit

Maladie de Lyme: 300 malades vont déposer plainte au pénal dès janvier

Original Article in French:  http://rmc.bfmtv.com/emission/maladie-de-lyme-300-malades-vont-deposer-plainte-au-penal-des-janvier-1331597.html

Translated To English Below

IN FRANCE – 300 people with Lyme disease will file criminal complaints in early January 2018 against the State, the National Agency for the Safety of Medicines and Health Products (ANSM) and the National Reference Center (CNR) in Strasbourg for influence peddling, abuse of company or government assets, concealment of abuse of government or company assets, endangering the lives of others, violation of the principle of independence of experts and conflict of interests.
This complaint aims in particular “to uncover the links of interests maintained between the National Reference Center of Strasbourg and the laboratories”. The complainants believe that screening tests are unreliable.

The director of the CNR, is an expert mandated by the State and the ANSM, who also collaborates with the laboratories that manufacture these tests and participates in the validation committees of the tests. He may be charged with criminal offense, influence peddling, corruption and misuse of corporate assets.

The plaintiffs also target the State and the ANSM for endangering the lives of others and manslaughter (patient suicides) and also lack of vigilance in the choice of experts and the quality of tests.

According to one of the plaintiffs’ lawyers, by imposing a single testing technique, a single screening protocol and favoring a certain number of laboratories, the health authorities “did not play their role of supervisory or regulatory authority, but actually became employees of the pharmaceutical industry.”

Today there are tens of thousands of patients who have not been diagnosed and many of them are in absolutely catastrophic medical, material and moral situations.

The lawyers claim the responsibility of the actors of public health, but also $611,345.00 of damages per patient.

“Absurd” tests: Today, the Elisa test is used to find out if a patient has Lyme disease. Elisa is the only test that exists in France to detect the disease. If it is negative, the exams stop there for the patient. If it is positive, the doctors give a second test to the patient, much more precise, the Western Blot.

Except that the first test detects only 3 to 5 different bacteria that can cause Lyme, whereas in reality, there are more than ten. To find out if they have Lyme or not, some patients have to go to veterinary tests, much more accurate, or go to other countries like Germany, where the tests are more advanced.

Some doctors do not stop at the negative test and continue to see patients to determine if they have Lyme or not, but they are then sued by the College of Physicians and Health Insurance for ‘non-compliance’. The lawyers therefore ask for the withdrawal of these tests that they consider “absurd”.

Vive la France!

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For more lawsuits in the works:

https://madisonarealymesupportgroup.com/2017/11/15/lyme-patients-file-lawsuit-against-idsa-and-insurers-over-treatment-denials/  Texans filing lawsuit

https://madisonarealymesupportgroup.com/2017/12/09/25303/

https://madisonarealymesupportgroup.com/2017/09/25/speaking-of-fake-science-fifty-seven-million-anti-trust-lawsuit-against-cdc-lyme-tests/  The CDC is accused of violation of the antitrust law in suppressing a direct testing method to diagnose an emerging infectious disease (Lyme borreliosis), which the CDC itself has called the ‘fastest growing vector borne disease in the USA’.  One of the purposes of the current lawsuit is to make the Exhibits public, so that Lyme disease patients can ask their lawyer to use the Exhibits to file their own SF-95 form for damages due to delayed diagnosis.
If he wins his case, Dr. Lee intends to donate the money to a non-profit organization to set up nested PCR/16S rRNA sequence diagnostic laboratories in hospitals located in Lyme disease-endemic areas so that all Lyme patients can be diagnosed early within a few days of first symptomatic presentation and receive timely and proper treatment.