Archive for the ‘Lyme’ Category

No Rash, No Fever, So Much Pain: The Case of Illy Jaffer’s Painful Year

https://www.houstonchronicle.com/lifestyle/renew-houston/health/article/No-rash-no-fever-so-much-pain-the-case-of-Illy  Story Here

No rash, no fever, so much pain: The case of Illy Jaffer’s painful year

**Comment**
See link for article – but here’s a few important points:
  1. Diagnosis of Lyme disease took a year to obtain.  This is common.
  2. She’s from Texas and according to Dr. Auwaerter, it is not a high transmission state, despite Lyme patients stating otherwise and despite research showing ticks are traveling everywhere:  https://madisonarealymesupportgroup.com/2016/10/25/hope-for-southerners/, https://madisonarealymesupportgroup.com/2018/05/31/no-lyme-in-the-south-guess-again/  Blanket statements like these keep patients from getting help.
  3. The article states Lyme is typically cured after 21 days of antibiotics.  WRONG.  https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/
  4. The article states “typical” symptoms include a skin rash.  WRONG.  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/
  5. The article states she tested positive but it wasn’t a 100% match. I have no idea what that means.  Did she have fewer bands than the CDC requires OR was it a different strain not picked up by CDC testing?  We will never know but either way current testing is problematic – as it typically is for everyone.
  6. She was prescribed antibiotics, a new pain med, and was pain-free after 21 days showing the importance of treatment. In her case it was help that came LATE.  Authorities should take note of this because they’ve been telling us that late treatment is worthless:  https://www.niaid.nih.gov/diseases-conditions/lyme-disease-antibiotic-treatment-research  I’m glad someone was willing to treat this poor woman.  Imagine – she could still be in excruciating pain – and there are thousands more just like her.
  7. The article states that she was lucky because not all patients are cured by antibiotics and go onto suffer chronic symptoms.  TRUE.

 

 

 

Category:

Activism, Heart Issues, Lyme

CDC’s Recommendations For Lyme Epitomize Institutional Bias

https://www.lymedisease.org/maloney-comments-tbdwg/

CDC’s recommendations for Lyme epitomize institutional bias

Dr. Elizabeth Maloney

Dr. Elizabeth Maloney delivered the following public comments to the federal Tick-Borne Disease Working Group this week.

Good morning committee members, I’m Dr. Elizabeth Maloney. I spoke with you at the January meeting and appreciate the opportunity to speak with you again.

I want to address statements made regarding the independence and neutrality of the CDC’s in-house treatment guidelines made yesterday.

I am concerned about the CDC’s in-house treatment guidelines because they epitomize the institutional bias patients, advocates and providers face with regard to Lyme disease.

A synopsis of IDSA guidelines?

Despite claims to the contrary, the CDC treatment recommendations are merely a synopsis of the IDSA guidelines. The CDC recommendations cite only four references. One of the four states that its treatment recommendations come from the IDSA, while another review ignores ILADS 2014 treatment guidelines entirely.

The sole author of the first review paper was one of four authors of the second. And that latter group included the lead author of the 2006 IDSA guidelines. This suggests that the CDC did not do its own, independent assessment of the evidence.

It was said that the CDC treatment recommendations work well for most patients with EM rashes. I’ve reviewed the comparative trial evidence and concluded that reported outcomes cannot be taken at face value.

Unsupported conclusions

My review identified significant design and execution problems as well as unsupported conclusions. Failing to discuss these obvious shortcomings suggests to me that the CDC treatment recommendations were a foregone conclusion, and that the group simply worked backwards to pick a few supporting references.

Perhaps that explains why a 2013 study of 74 EM patients by Aucott and colleagues wasn’t cited. That carefully designed study demonstrated that 21 days of doxycycline failed to return 40% to their pre-Lyme baseline at six months post-treatment, including 11% who had ongoing symptoms and functional decline and 25% who had ongoing symptoms alone. If this represents “works well for most,” we’ve set the outcome bar much too low.

The CDC suggests that US EM patients can be treated with 14 days of cefuroxime or amoxicillin, yet none of the US trials used these agents for less than 20 days. 10 days of doxycycline is said to be sufficient but of the two trials of that duration, one had a noncompletion rate of 50% and in the other, 36% of the patients were retreated.

Given the poor quality of the CDC’s process for generating recommendations, I now think it’s imperative that the curriculum development team include members who understand the limitations of the current evidence and who include a broader diversity of scientific viewpoints to avoid group think and bias. Otherwise clinicians will get the same old, same old and patients who might be helped won’t be.

Dr. Elizabeth Maloney is President of Partnership for Tick-borne Diseases Education, a 501(c) that provides educational resources to medical professionals and the public. She lives in a high-Lyme area of Minnesota.

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**Comment**

I would have loved to have been a fly on the wall during that lashing.

Category:

Activism, Lyme, Uncategorized

Many Lyme Disease Cases Go Unreported. A New Model Could Help Change That.

https://blogs.ei.columbia.edu/2020/03/06/lyme-disease-new-model/

Many Lyme Disease Cases Go Unreported. A New Model Could Help Change That.

tick on a blade of grass

The Centers for Disease Control and Prevention receives reports of about 30,000 cases of Lyme disease each year. The real number, according to the agency, is closer to 300,000.

Underreporting affects the ability of public health authorities to assess risk, allocate resources and devise prevention strategies. It also makes early detection very difficult, hampering efforts to treat the condition quickly and effectively.

A new report, published March 3 in the Journal of the American Medical Association, describes a data model developed by researchers from Columbia University and RTI International, a nonprofit research institute, that helps identify areas of the United States where Lyme disease cases may go unreported.

“We believe our analysis can help predict the trajectory of where Lyme disease will spread,” said Maria Pilar Fernandez, a post-doctoral researcher at Columbia and lead author of the study. “Identifying high-risk areas can lead to surveillance in counties and areas where infections are likely to emerge. It also allows authorities to alert physicians and the public, which can lead to early treatment, when it is most effective.”

To develop their model, the researchers analyzed publicly available data, tracking the geographic spread of Lyme disease over nearly two decades. They studied an estimated 500,000 cases of the illness reported to CDC from different counties across the United States between 2000 and 2017.

“We were able to show that about 162 U.S. counties may already have Lyme disease, but they have not yet been reported to the CDC,” said Maria Diuk-Wasser, associate professor in the Department of Ecology, Evolution and Environmental Biology at Columbia and a co-author on the study.

The CDC collects Lyme disease data from state and local health departments, which base the number of cases on notifications from clinicians, hospitals and laboratories. Lyme disease is difficult to diagnose, and accurate case assessment depends on many variables, the researchers said, from provider awareness and testing methods to reporting practices, state budgets and personnel.

Although Lyme disease has been diagnosed in almost every state, most cases reported to the CDC are in the Northeast and upper Midwest. If diagnosed early—a rash commonly appears around the site of the tick bite—the condition can be effectively treated with antibiotics. Longer term infections can produce more serious symptoms, including joint stiffness, brain inflammation and nerve pain.

Models have been created in the past to identify high-risk areas in a few states or regions in the United States, but the new one expands the geographic scope to all areas in the U.S. where the disease is most likely to occur.

“In the future, the model can be expanded,” Fernandez said. “We hope to continue to keep track of the spread and inform authorities about areas where Lyme disease is likely to emerge.”

This research was supported by the US Centers for Disease Control and Prevention and by an Interdisciplinary Predoctoral Fellowship from the Earth Institute, Columbia University.

This story was originally published by Columbia News. 

_________________

**Comment**

A rash DOES NOT COMMONLY APPEAR.  Depending upon who’s counting the numbers range from 25-80%.  It’s highly variable.  And, the “condition” is not effectively treated with antibiotics.  This narrative needs to be corrected as it continues to be used as if it’s gospel truth.  Antibiotic failure has been reported from the beginning.  The longer you follow the patient, the higher the failure rate.  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Unfortunately, it’s an apples and oranges story.  The CDC wants us to believe that antibiotics clear the EM rash, therefore patients are “cured,” when there is absolutely no proof that clearance of the rash equates to clearing a systemic infection.  It’s also important to remember that the rash (if there even is one) will eventually clear on its own without any drugs. 

 

Category:

Activism, Lyme, research

Lyme Malpractice Suit: Ploughkeepsie Family’s Claims May Go To Trial

The following story is about Joseph Elone, a 17 year old who died in 2013 from Lyme Myocarditis. Please read it as there are numerous important things to be learned:

  1. He initially complained of sore throat, fever, and cough – not your “standard” Lyme symptoms.
  2. The warning bell should have been set off; however, when the doctor was told he’d spent two weeks in New Jersey for environmental studies, in an outdoor learning laboratory. The family had also been camping but didn’t notice any tick bites. (Just because you don’t see a tick doesn’t mean you haven’t been bitten)  N.J. is one of the top seven states for Lyme. 
  3. Initially diagnosed with a viral infection, they did give him standard serology testing for Lyme which true to form came back negative. Due to negative testing and lack of an EM rash they didn’t treat him for Lyme. This right here is playing out in doctor office after doctor office all around the globe.
  4. The family has filed a lawsuit in the Supreme Court of the State of New York, which may go to trial this year, as the family believes it all could have been prevented if the pediatricians had treated him promptly for Lyme disease.  Bingo!
  5. The CDC claims that Lyme myocarditis is rare and only occurs in approximately 1 out of 100 cases. The problem with this of course is only a fraction of cases are reported to the CDC and many, many cases of Lyme itself go undiagnosed as well as cases causing myocarditis, so for the CDC to state anything about numbers is pure conjecture.
  6. Many hope the case will go to trial as it would be a clear example of faulty testing.
  7. Although extremely sad, this is a perfect example that Lyme CAN KILL.

Story here:  https://www.poughkeepsiejournal.com/story/news/local/2020/03/09/lyme-malpractice-suit-poughkeepsie-familys-claims-may-go-trial/  Lyme disease suit: Poughkeepsie teen’s death after negative test focus of malpractice suit

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For more:  https://madisonarealymesupportgroup.com/2019/12/21/patients-can-die-when-lyme-carditis-is-not-treated/

https://madisonarealymesupportgroup.com/2020/01/12/broad-range-of-presentations-for-lyme-carditis-cases/

https://madisonarealymesupportgroup.com/2019/11/29/increasing-burden-of-lyme-carditis-in-united-states-childrens-hospitals/

https://madisonarealymesupportgroup.com/2019/11/04/suspect-lyme-carditis-start-empiric-antibiotics-case-report-suggest-and-lyme-carditis-is-not-rare/

https://madisonarealymesupportgroup.com/2019/02/21/diagnosis-treatment-of-lyme-carditis/

https://madisonarealymesupportgroup.com/2019/05/15/lyme-carditis-presenting-as-atrial-fibrillation/

https://madisonarealymesupportgroup.com/2019/06/04/how-vector-borne-diseases-impact-heart-health/

https://madisonarealymesupportgroup.com/2020/03/04/atri-ventricular-conduction-disturbance-due-to-lyme-carditis/

Category:

Activism, Lyme, Testing

LDO President’s Comment to the TBDWG

https://www.lymedisease.org/mervine-comments-tbdwg/

Condemned to a life of debilitating illness? There’s a better way.

Phyllis Mervine is Founder and President of LymeDisease.org.

March 6, 2020

Phyllis Mervine gave the following public comments via telephone, during the recent federal Tick-Borne Disease Working Group meeting.

The single most important thing the Working Group can do right now for the Lyme community and all the patients suffering with Lyme disease is to ask Congress to instruct the CDC to educate the medical community about the two standards of care.

For years, the CDC promoted and linked to the Lyme diagnostic and treatment guidelines of the Infectious Diseases Society of America (IDSA). This violated its own ethics rules about not taking sides in a scientific debate when the evidence is uncertain, and undermining public trust in government.

They persisted even after new International Lyme and Associated Diseases Society (ILADS) guidelines were published on the National Guidelines Clearinghouse, while the IDSA guidelines were delisted for being out of date.

Today, inexplicably, the CDC does not mention anywhere on its website the only peer-reviewed guidelines that adhere to the rigorous GRADE evidence assessment standards recommended by the National Academy of Sciences.

GRADE recommendations take into account not only the quality of the evidence, but also the balance between benefits and harms and patient values and preferences.

The CDC no longer recommends the IDSA guidelines explicitly.  Instead, it promotes IDSA diagnosis and treatment recommendations chapter and verse. It completely fails to mention the ILADS perspective or even that there are different guidelines.

There are two big problems with this. First, the IDSA guidelines recommend the use of the restrictive surveillance case definition for clinical diagnosis.

As Paul Mead of the CDC has noted in the past, both research definitions and surveillance definitions are not developed to guide clinical diagnosis and care, nor should they be.

Acknowledging “two standards of care” would help

They leave out the vast majority of patients diagnosed in clinical practice. As a result, people are not being diagnosed and are condemned to a life of debilitating sickness. Acknowledging the two standards of care,  would allow more patients to be diagnosed early and saved from years of suffering.

Second, the standard IDSA diagnosis and treatment recommendations leave many patients chronically ill–applying a one-size-fits-all approach to a complex problem. The ILADS standard of care solves this problem by providing individualized treatment that takes into account the patient’s disease risk, severity, and treatment response.

It is time for the CDC to inform the medical community that there are two standards of care. By taking this simple step, the CDC could save lives. Please ask Congress to make this happen.

Phyllis Mervine is Founder and President of LymeDisease.org.

Category:

Activism, Lyme, Uncategorized