Archive for the ‘Lyme’ Category

Disulfiram Psychosis Update

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Disulfiram: Wikipedia

A Wisconsin Lyme literate doctor who is part of an ILADS provider group with Disulfiram experience, has found that some patients with a genetic predisposition can have significant side effects when using Disulfiram.

Please have your health practitioner look at the dopamine SNP’s before beginning Disulfiram treatment.  This LLMD also recommends:

  • Cysteine
  • B6
  • Tyrosine
  • Disulfiram low and slow at 62.5 mg twice a week, increasing only as tolerated
Please share this far and wide as I do not want another patient to go through the hell I’ve been through.

If you have not read about my experience with Disulfiram psychosis, please see:  https://madisonarealymesupportgroup.com/2019/10/14/november-2019-lyme-support-meeting-oct-meeting-canceled-due-to-reaction-to-disulfiram/

My symptoms were:

  1. Converging vision (eyes seemingly want to cross, kind of like when you are up at 2 a.m. studying for a Biomechanics final.
  2. Inability to orgasm (sorry if this is TMI, but since this is a matter of life and death I felt the need to throw it out there)
  3. Bloating (belching, passing gas, and distended stomach)

If I would have been warned of these issues I perhaps could have avoided two ER visits and a week long stay at the UW Hospital.  My total tab is estimated to be potentially more than 20K, so please spread the word to anyone on Disulfiram or considering it.

For doctors reading this, the titration is as follows:

  • 250mg MWF for 3 weeks, then
  • 250 daily for 3 weeks, then
  • 500mg MWF,
  • 250mg T, TH, SAT, SUN for 3 weeks, then
  • 500mg daily for approximately 3 months with individual variation. The goal is to be symptom free

Others are titrating even more slowly; however, I assure you my issues with the drug had nothing to do with titration or anything I did. My husband was on the exact same protocol and was fine.  I truly believe this is a dopamine issue and a toxic reaction to disulfiram.

I’ve been alerted that this has happened to others as well.

For research on psychosis induced by disulfiram:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5290718/

Abstract

Disulfiram is the commonly prescribed drug for the treatment of alcohol dependence. It’s major metabolite (diethyldithiocarbamate) is an inhibitor of dopamine-betahydroxylase, an enzyme that catalyzes the metabolism of dopamine to norepinephrine resulting in psychosis. We recommend that disulfiram should be used at the lowest effective dose, possibly 250 mg daily and caution should be taken while prescribing disulfiram for patients with personal and familial antecedents of psychosis.…..Disulfiram-related psychiatric complications are reported to be more prevalent in eastern countries,3) which suggests that genetic factors may play a role in disulfiram induced psychosis.
____________________________________________________________________________________________

In this paper, a hypothesis of vulnerability to disulfiram psychosis is proposed, based on the current lines of evidence for the biological mechanisms involved in the psychoses.

Disulfiram Is a DA Agonist

Disulfiram is an inhibitor of dopamine-beta- hydroxylase (DBH), an enzyme that catalyzes themetabolism of DA to norepinephrine (NE).3 By inhibiting the metabolic pathway from DA to NE in the central nervous system, disulfiram results in an increase of DA concentrations. Therefore, disulfiram is a DA agonist, and is likely to exacerbate preexisting or latent psychosis, similar to amphetamine, methylphenidate and L-dopa.

DAandAffectivePsychosis

Increased brain DA is highly correlated with psychomotor activity in animals, and L-dopa has been shown to produce episodes of hypo maniaand mania in most patients with bipolar affective psychosis.4 It is possible,therefore,that disulfiram can uncover a preexisting or latent hypomania or mania.

For more on Disulfiram:  https://madisonarealymesupportgroup.com/2019/06/03/disulfiram-in-the-treatment-of-lyme-babesiosis-3-case-reports/

https://madisonarealymesupportgroup.com/2019/07/14/disulfiram-breakthrough-drug-for-lyme-other-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2019/07/26/is-disulfiram-the-magic-bullet-for-chronic-lyme-disease/

https://madisonarealymesupportgroup.com/2019/09/18/dr-liegner-interview-on-disulfiram/

Also, please see this update:  https://madisonarealymesupportgroup.com/2019/10/27/disulfiram-psychosis-update-2/

 

 

 

Category:

Lyme, Treatment

Top Nine Tips For Coping With Social Anxiety

https://articles.mercola.com/sites/articles/archive/2019/09/19/tips-for-coping-with-social-anxiety.aspx

Top Nine Tips for Coping With Social Anxiety

Analysis by Dr. Joseph MercolaFact Checked

September 19, 2019

tips for coping with social anxiety

STORY AT-A-GLANCE

  • Social anxiety disorder, formerly known as social phobia, affects 7.1% of U.S. adults in any given year, while an estimated 12.1% of U.S. adults will experience the disorder at some point during their lives
  • Social mishap exposure practice is a technique that may help; it puts you in the very situations you fear most — such as singing in a public place — in order to help reinforce the notion that nothing catastrophic will happen as a result
  • Engaging in acts of kindness, such as doing a roommate’s dishes, was found to reduce the desire to avoid social situations in students with high levels of social anxiety
  • Emotional Freedom Techniques, eating fermented foods, aromatherapy, ashwagandha, healthy breathing techniques and avoiding EMFs may also help to lessen anxiety naturally

Social anxiety disorder, formerly known as social phobia, affects 7.1% of U.S. adults in any given year, while an estimated 12.1% of U.S. adults will experience the disorder at some point during their lives.1 People with social anxiety disorder feel intense fear and anxiety in social situations, such that they may try to avoid such situations altogether.

With social anxiety disorder, there is an overriding fear of being negatively judged or rejected by others when in public. People with the condition may worry that others will notice their anxiety, leading to embarrassment and sometimes debilitating panic attacks.

In addition to blushing, shaking hands or stumbling over words, people with social anxiety disorder may experience rapid heart rate, nausea and sweating when in social or performance situations.2

The fear of being judged by others can be so powerful that it can cost those affected job opportunities, friendships and romantic relationships. The condition can range from mild to severe, with an estimated 29.9% of adults with social anxiety disorder having serious impairment while 38.8% have moderate impairment and 31.3% mild impairment.3

There are, however, strategies that can help people with social anxiety to cope and regain control of their lives without having to struggle through debilitating fear.

Social Anxiety Disorder Is Different From Shyness

It’s commonly assumed that social anxiety is a form of extreme shyness, but there are distinct differences. While people who are shy may be more likely to suffer from social anxiety,4 shyness is considered to be a “normal” personality trait, which isn’t associated with the significant fear felt by those with social anxiety.

Those with social anxiety experience more distress and disruptions to their daily life than people who are simply shy.5 While those with the disorder typically know their fears are irrational, they may feel powerless against the anxiety. The Social Anxiety Association explained:6

“People with social anxiety are many times seen by others as being shy, quiet, backward, withdrawn, inhibited, unfriendly, nervous, aloof, and disinterested. Paradoxically, people with social anxiety want to make friends, be included in groups, and be involved and engaged in social interactions.

But having social anxiety prevents people from being able to do the things they want to do. Although people with social anxiety want to be friendly, open, and sociable, it is fear (anxiety) that holds them back.“

Different triggers may cause symptoms of social anxiety to flare up in different people. The most common symptom is a feeling of intense anxiety or fear, which may be accompanied by trembling, dry mouth, racing heart, muscle twitches and nervousness. Triggering symptoms may include:7

Meeting new people Being teased or criticized
Being the center of attention Making phone calls, writing or even swallowing in public
Being watched or observed Having to speak in public
Meeting someone in an authority position Making eye contact with others

Nine Top Tips for Coping With Social Anxiety

If you’re struggling with social anxiety, taking steps to cope can be life-changing, but many people avoid seeking help. According to the Anxiety and Depression Association of America, “Despite the availability of effective treatments, fewer than 5% of people with social anxiety disorder seek treatment in the year following initial onset and more than a third of people report symptoms for 10 or more years before seeking help.”8

If your symptoms are debilitating, professional help is recommended. For mild or moderate cases, however, as well as to support treatment in severe cases, the following strategies can help.

1. Take Opportunities for Social Mishaps — Social mishap exposure practice is a technique that puts you in the very situations you fear most — such as singing in a public place — in order to help reinforce the notion that nothing catastrophic will happen as a result.

You may need to seek the support of a professional to work through this, but the idea is that “patients are forced to re-evaluate the perceived threat of a social situation after experiencing that social mishaps do not lead to the feared long-lasting, irreversible and negative consequences.”9

There is evidence that avoiding social interactions may make social anxiety worse. Similarly, this can lead to other problems, like smartphone addiction, which is associated with social anxiety.10 “Hiding” behind a cellphone is likely to make mental health worse, whereas social mishap exposure is intended to help desensitize those affected, making social experiences easier to handle. As explained in Cognitive and Behavioral Practice:11

“An important reason why SAD [social anxiety disorder] is maintained in the presence of repeated exposure to social cues is because individuals with SAD engage in a variety of avoidance and safety behaviors to reduce the risk of rejection.

These avoidance tendencies, in turn, prevent patients from critically evaluating their feared outcomes and other catastrophic beliefs, leading to the maintenance and further exacerbation of the problem.

Social mishap exposures directly target the patients’ exaggerated social cost by helping patients confront and experience the actual consequences of such mishaps without using any avoidance strategies.”

2. Turn Negative Thoughts Into Positive Ones 

Mercola.com’s EFT practitioner Julie Schiffman talks about emotional freedom technique (EFT) or tapping to help you get rid of panic attacks.  Approx. 10 min.

A simple example of a positive coping strategy is the “yes, but” technique. You may think, “Yes, I’m going to be speaking at a meeting tomorrow, but I am well prepared and will be successful.”12 The positive affirmation helps to balance the negative thoughts and may help calm your mind.

Energy psychology tools such as the Emotional Freedom Techniques (EFT), demonstrated in the video above, can help you reduce your stress by correcting the bioelectrical short-circuiting that can happen when anxiety becomes chronic.

Research confirms EFT can be a powerful intervention for stress and anxiety,13 in part because it specifically targets your amygdala and hippocampus, which are the parts of your brain that help you decide whether or not something is a threat.14

EFT has also been shown to lower cortisol levels, which are elevated when you’re stressed or anxious, while improving symptoms of psychological distress, including anxiety and depression.15

3. Avoid Alcohol — It may be tempting to ease anxiousness with alcohol, but drinking heavily will have the opposite effect, lowering mood and increasing anxiety throughout the next morning.16Further, excessive alcohol use is common among people with social anxiety,17 so it’s best to avoid this negative coping strategy in favor of the other positive options listed here.

4. Engage in Acts of Kindness — Engaging in acts of kindness, such as doing a roommate’s dishes, was found to reduce the desire to avoid social situations in students with high levels of social anxiety.18,19

In a news release, study author Jennifer Trew explained, “Acts of kindness may help to counter negative social expectations by promoting more positive perceptions and expectations of a person’s social environment. It helps to reduce their levels of social anxiety and, in turn, makes them less likely to want to avoid social situations.”20

5. Protect Yourself From EMFs — Due to the pioneering work of Martin Pall, Professor Emeritus of biochemistry and basic medical sciences at Washington State University,21 we know that voltage gated calcium channels are over 7 million times more sensitive to microwave radiation than the charged particles inside and outside our cells. This means that the safety standards for this exposure are off by a factor of 7 million.

When EMFs hit your voltage gated calcium channels, nearly 1 million calcium ions per second are released into the cell, which then causes the cell to release excessive nitric oxide that then combines with superoxide to form peroxynitrate, which then forms the dangerous hydroxyl free radical that causes massive mitochondrial dysfunction.

The tissues that have the greatest density of voltage gated calcium channels are your nerves and tissues, like the pacemaker in your heart and your brain. When the channels in the brain are activated, it causes a major disruption in neurotransmitter and hormonal balance that can increase the risk for anxiety. You can learn how to reduce your EMF exposure here.

6. Use Healthy Breathing Techniques

According to Konstantin Buteyko, founder of the Buteyko Breathing Method, anxiety is triggered by an imbalance between gases in your body, specifically the ratio between carbon dioxide and oxygen. In the video above, Buteyko breathing coach Robert Litman explains how your breathing affects the ratio of these gases and demonstrates how you can literally breathe your way into a calmer state of mind.

A Buteyko breathing exercise that can help quell anxiety is also summarized below. This sequence helps retain and gently accumulate CO2, leading to calmer breathing and reduced anxiety. In other words, the urge to breathe will decline as you go into a more relaxed state.

  • Take a small breath into your nose, a small breath out; hold your nose for five seconds in order to hold your breath, and then release to resume breathing.
  • Breathe normally for 10 seconds.
  • Repeat the sequence several more times: small breath in through your nose, small breath out; hold your breath for five seconds, then let go and breathe normally for 10 seconds.

7. Eat Fermented Foods — Fermented foods have been shown to curb social anxiety disorder in young adults, likely by helping to optimize the gut microbiome.22 Good bacteria, or probiotics, have also been shown to help normalize anxiety-like behavior in mice with infectious colitis.23Along these lines, clean up your diet to help stabilize your mood by eating more of these anxiety-busting foods.

8. Try Lavender Aromatherapy — Aromatherapy is a simple, DIY tool you can use to help calm your nerves. In one study, 100 patients admitted to a medical center for ambulatory surgery were given either lavender aromatherapy (inhaled) or standard nursing care (the control group) while in the preoperative waiting room.

Their levels of anxiety were recorded upon arrival to the waiting area and again upon departure. Those who received the aromatherapy had a greater reduction in anxiety compared to the control group.24

Research published in Phytomedicine also found that an orally administered lavender oil preparation was as effective as the drug Lorazepam for the treatment of generalized anxiety disorder.25

9. Consider Ashwagandha — Ashwagandha is a powerful adaptogenic herb that helps your body manage and adapt to stress. In a 2009 study, patients diagnosed with moderate to severe anxiety lasting longer than six weeks who were treated with 300 milligrams of ashwagandha root for three months reported “significantly decreased” symptoms compared to those undergoing standard psychotherapy.26

Be Wary of Drugs for Treating Anxiety

Antidepressant therapy with selective serotonin reuptake inhibitors (SSRIs) is sometimes recommended for anxiety disorders based on the “chemical imbalance” theory that anxiety disorders (and depression) may be due to low serotonin levels. Yet, research suggests people with social anxiety disorder may actually have increased serotonin synthesis,27 making treatment with SSRIs highly questionable.

Other commonly prescribed drugs for anxiety include benzodiazepine drugs like Ativan, Xanax and Valium. They exert a calming effect by boosting the action of a neurotransmitter called gamma-aminobutyric acid (GABA) in the same way as opioids (heroin) and cannabinoids (cannabis) do.

This in turn activates the gratification hormone, dopamine, in your brain. Since the identical brain “reward pathways” are used by both types of drugs, they can be addictive.

If you’re struggling with social anxiety, you have nothing to lose, and everything to gain, by applying lifestyle modifications before trying medication, and you may find that these strategies help lessen your anxiety naturally, helping you to embrace life once again.

As mentioned, if your anxiety is so severe that it’s interfering with your daily life, speak with a holistic health care provider who can help you develop a comprehensive treatment plan.

_________________

**Comment**

I think there is much to be discovered and utilized in helping Lyme/MSIDS patients with the psychological aspects of this complex and debilitating illness. Anxiety is common. While Mercola’s article deals specifically with “social anxiety,” many Lyme/MSIDS patients suffer with anxiety due to having an infection(s) in their brains. My husband and I both had serious symptoms that were frankly, unbelievable, had we not lived to tell about them! (hearing voices, hallucinations, anxiety, depression, OCD-like behavior, inability to handle any amount of stress, irritability and rage, and a veritable laundry-list from hell.  For more on psychological Lyme:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

While space constraints prohibit me from going into detail, I am going to mention a few things we tried with success in our journey with the supervision of experienced health professionals. This is solely for your education and enjoyment. 

  1. Identify and treat all infections:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/  Since many symptoms overlap, but can be caused by different pathogens, it often takes a “trial and error” approach to determine which drugs work. This takes time, savvy, training, and patience.
  2. Work with an ILADS-trained practitioner (often called a Lyme literate doctor) who is trained in identifying symptoms that many of these infections can cause. In my experience, mainstream medicine is woefully uneducated and remains in the dark ages regarding the complexity and interplay of tick-born illnesses. They still treat this as a singular illness for the most part with a singular drug, mainly doxycycline, for a extremely limited time (21 days). This is medical ignorance at best, and outright abuse at the worst ,that has continued unabated for over 40 years.
  3. Discuss neurotransmitters with your LLMD as they can and often are affected with brain infections.  Supplementing with them may very well help your symptoms. My husband to this day uses gabapentin at night to help with sleep. Interestingly, gabapentin, also called neurontin, is used by some practitioners for anxiety and other mood disorders. Here’s a great read on it: https://pro.psychcentral.com/neurontin-does-it-work-for-anxiety/
  4. Regarding anxiety, to be frank, nothing helped my husband except lengthy Lyme & Bartonella treatment, which you can read about here: https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/ and https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/. He tried discontinuing gabapentin for a short time but had to resume it when he discovered he had trouble staying asleep. I honestly don’t know if he was off it long enough to determine it had anything to do with anxiety, of which he hasn’t struggled with for years.
  5. Also, the challenging thing, is that anxiety for him didn’t rear its head until further along in treatment. I was once told treatment for Lyme/MSIDS is like peeling back an onion layer by layer. This has definitely been our experience. Some symptoms are seemingly more prominent at first but as you treat, some symptoms go away altogether while others all of a sudden appear out of nowhere.  This is probably the most complex illness on the planet. An experienced hand is required to navigate these muddied waters. While some mainstream practitioners take offense at the words Lyme literate, those of us struggling with this as well as medical practitioners who have dedicated countless hours studying and treating for it believe it takes an experienced and practiced, open mind.

For more:  https://madisonarealymesupportgroup.com/2019/07/09/are-lyme-disease-anxiety-connected-dr-rawls/

 

 

Category:

Lyme, Psychological Aspects, Treatment

Why Patients Are Caught in the Battle Over Treating Chronic Lyme Disease

 

Why patients are caught in the battle over treating chronic Lyme disease

Medical experts and guidelines divided over chronic or post-treatment Lyme disease syndrome

September 20, 2019

CBC Radio ·

jane-baileyJane Bailey, a Nova Scotia woman who had to leave Canada to get treatment in the U.S., is part of a vocal patient movement that’s demanding more recognition of chronic Lyme disease. (Submitted by Jane Bailey)

For much of her life, Jane Bailey was in peak physical condition. But that all changed in the summer of 2013, when a tick made a temporary home inside her ear canal.

“It was in there for three-and-a-half days,” she recalled. By the time she got it removed, “it was the size of a kidney bean.”

The 48-year-old Nova Scotian biology teacher with a military background is convinced she’s been suffering from persistent symptoms of Lyme disease ever since.

A month after her vacation, she began to experience fatigue, joint pains and heart palpitations. She couldn’t sleep and had trouble remembering names.

 I was skeletal … and all my muscles were atrophying.– Jane Bailey

For more:  https://www-cbc-ca.cdn.ampproject.org/c/s/www.cbc.ca  This is a lengthy article explaining the Lyme Wars and also has numerous audio interviews.  Very good, in-depth coverage.

Category:

Activism, Lyme

More Than Lyme: Tick Study Finds Multiple Agents of Tick-borne Diseases

NEWS RELEASE 

More than Lyme: Tick study finds multiple agents of tick-borne diseases

COLUMBIA UNIVERSITY’S MAILMAN SCHOOL OF PUBLIC HEALTH

IMAGE
IMAGE: THREE PRIMARY HUMAN-BITING TICK SPECIES PRESENT ON LONG ISLAND WERE EXAMINED IN THIS STUDY. LEFT — BLACKLEGGED TICK ALSO KNOWN AS THE DEER TICK, MIDDLE — THE AMERICAN DOG TICK,… view more 

CREDIT: SANTIAGO SANCHEZ-VICENTE, STONY BROOK UNIVERSITY

In a study published in mBio, a journal of the American Society for Microbiology, Jorge Benach and Rafal Tokarz, and their co-authors at Stony Brook University and Columbia University, reported on the prevalence of multiple agents capable of causing human disease that are present in three species of ticks in Long Island.

Tick-borne diseases have become a worldwide threat to public health. In the United States, cases more than doubled, from 22,000 in 2004 to more than 48,000 in 2016, according to the U.S. Centers for Disease Control. Tick-borne diseases range from subclinical to fatal infections with disproportionate incidence in children or the elderly. Moreover, some infections can also be transmitted by blood transfusions and cause severe disease in patients with underlying disorders. While public attention has focused on Lyme disease, in recent years, scientists have uncovered evidence that ticks can carry several different pathogens capable of several different tick-borne diseases, sometimes in a single tick.

In the new study, researchers collected ticks from multiple locations throughout Suffolk county in the central and eastern part of Long Island, where seven diseases caused by microbes transmitted by ticks are present. In total, they examined 1,633 individual ticks for 12 separate microbes. They found that more than half of the Ixodes (deer ticks) were infected with the Lyme disease agent, followed by infections with the agents of Babesiosis and Anaplasmosis. Importantly, nearly one-quarter of these ticks are infected with more than one agent, resulting in the possibility of simultaneous transmission from a single tick bite.

Notably, the lone star tick, a species originating from the southern U.S., has expanded its range, possibly fueled by climate change. This study documents that the invasive lone star tick is abundant in Long Island, and that it is a very aggressive tick that can transmit a bacterium that causes a disease known as Ehrlichiosis. The lone star tick has also been implicated in cases of a novel form of meat allergy, and the immature stages can cause an uncomfortable dermatitis.

“Polymicrobial infections represent an important aspect of tick-borne diseases that can complicate diagnosis and augment disease severity,” says corresponding author Jorge Benach, PhD, Distinguished Professor at the Department of Microbiology and Immunology at the Renaissance School of Medicine at Stony Brook University. “Some of the polymicrobial infections can be treated with the same antibiotics, but others require different therapies, thus enlarging the number of drugs to treat these infections.”

“In evaluating tick-borne infection, more than one organism needs to be considered,” says senior author Rafal Tokarz, PhD, assistant professor of epidemiology in the Center for Infection and Immunity at the Columbia Mailman School of Public Health, and a graduate of the Department of Microbiology and Immunology at Stony Brook University. “This study emphasizes the need to focus on all tick-borne diseases, not just Lyme.”

###

The first author is Santiago Sanchez, a post-doctoral fellow in the Department of Microbiology and Immunology at Stony Brook University. Teresa Tagliafierro from Columbia and James Coleman from Stony Brook are co-authors of the study.

This study was funded by a grant from the National Institutes of Health to Benach. Support was also provided by the Island Outreach Foundation in Blue Point, NY, to the Stony Brook Renaissance School of Medicine. Support from the Steven & Alexandra Cohen Foundation (CU18-2692) was provided to Tokarz.

 

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.

__________________

**Comment**

Again, climate change has nothing to do with tick proliferation and disease spread: https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/

https://madisonarealymesupportgroup.com/2018/11/17/uw-madison-phd-in-ecological-climatology-climate-change-computer-models-fudged-except-russian-model/  Dr. Patrick Michaels, director of the Center for the Study of Science at the Cato Institute, provides insight into the debate over climate change and the political games played to create policy.

Political games surrounding Lyme/MSIDS have gone on long enough. Do research on important issues that will help patients.

 

 

 

Category:

Anaplasmosis, Babesia, Ehrlichiosis, Lyme, research, Ticks, Transmission

Shapiro’s Verbal Diarrhea & Current CDC Lyme testing is Required For Concealing Persistent Infection

I’ve combined advocate Carl Tuttle’s updates into one. In this first update, he points out the Dr. Shapiro’s “verbal diarrhea” published in the Boston Globe article. In the second, he points out the need for faulty CDC 2-tiered Lyme Lyme testing to conceal persistent infection being experienced by many patients.

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24999846?

Boston Globe: Is ‘chronic Lyme disease’ real?

AUG 27, 2019 — 

Once again we see more “verbal diarrhea” out of Dr. Eugene Shapiro published in the Boston Globe……

——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: eugene.shapiro@yale.edu
Cc: csears@jhmi.edu, PracticeGuidelines@idsociety.org, tickbornedisease@hhs.gov, chris.smith@mail.house.gov, pfm0@cdc.gov, david.scharfenberg@globe.com, letter@globe.com, jennifer.peter@globe.com, brian.mcgrory@globe.com
(88Undisclosed recipients)
Date: August 26, 2019 at 10:14 AM
Subject: Is ‘chronic Lyme disease’ real? By David Scharfenberg Globe Staff

IDEAS | DAVID SCHARFENBERG

Is ‘chronic Lyme disease’ real?

By David Scharfenberg August 22, 2019, 8:00 a.m.

https://www.bostonglobe.com/ideas/2019/08/22/chronic-lyme-disease-real/82qGnp5GmQbLE42nlb4otJ/story.html

Left untreated, Lyme can lead to fever and joint pain. But even then, the disease is eminently treatable.

Aug 26, 2019

Yale New Haven Children’s Hospital
1 Park Street, Ste West Pavilion – 2nd Floor
New Haven, CT, 06504
Attn: Eugene Shapiro, MD Professor of Pediatrics

Dr. Shapiro,

You were recently quoted a number of times in the above listed Boston Globe article but you didn’t call attention to the following Dr. Ying Zhang study from 2015:

Standard antibiotic treatment for Lyme disease does not kill persistent Borrelia bacteria.

http://droopyyoupi.blogspot.com/2015/08/standart-antibiotic-treatment-for-lyme.html

-What has tuberculosis and Borrelia burgdorferi in common? In the late stage of the disease occurs persistent (tolerant) bacteria, which essentially means that the bacteria lasts and lasts and lasts. They protect themselves against antibiotics and are difficult to treat.

– Both Borrelia burgdorferi and tuberculosis is relatively easy to cure in the early stages, even with the use of one antibiotic. In the late stage it is impossible to cure the disease with the same type of treatment in the acute phase, said Dr. Ying Zhang when he visited the year NorVect conference.
____________________________________

The editorial department of The Journal of the American Medical Association (JAMA) believed that I had a rather important infectious disease question and published my letter to the editor on December 18, 2018. You and Dr. Wormser neglected to answer the highlighted question below.

Controversies About Lyme Disease

JAMA. 2018;320(23):2481. doi:10.1001/jama.2018.17195

Published question:

“It is well known that untreated streptococcal pharyngitis can progress to rheumatic fever, causing irreversible heart damage. Untreated syphilis leads to progressive disability and dementia, and untreated human immunodeficiency virus infection progresses to AIDS with significant disability and death. What happens to a patient with Lyme disease who goes months, years, or decades before diagnosis because of a false-negative serological test result? [Missing bulls-eye rash, misdiagnosis etc.] Shapiro and Wormser do not discuss the consequences of untreated Lyme disease in their Viewpoint.”

The absence of a bulls-eye rash after tick bite allows patients to progress to severe neurological disease instead of obtaining a prompt diagnosis and early treatment. Humans do not produce detectable antibodies to Lyme disease for 4-6 weeks after a tick bite. By the time serology tests are positive, the spirochetes have already invaded various deep tissues, like those in syphilis, and are hard to eradicate with antibiotics.

Post Treatment Lyme Disease Syndrome (PTLDS) after early treatment and untreated Lyme of months, years or decades are two entirely different disease states; the latter being ignored for over three decades. Patients who have had a prolonged exposure to the pathogen are almost always incapacitated. In fact, patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin yet there are no Public Service Announcements informing the public that you could become horribly “debilitated” or die from Lyme disease.

Why has the focus over the past three decades been on the acute stage of Lyme disease after early treatment [1] while the horribly disabled are left to fend for themselves after the one-size-fits-all IDSA treatment guideline fails?
The statement below was extracted from Dr. Raymond Dattwyler’s patent:

United States Patent US 7.887,815 B2
http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=%2Fnetahtml%2FPTO%2Fsrchnum.htm&r=1&f=G&l=50&s1=7,887,815.PN.&OS=PN/7,887,815&RS=PN/7,887,815

Dattwyler et al. Feb. 15, 2011

“Clinically, Lyme disease is a progressive disease with a wide array of manifestations. Early diagnosis and treatment is critical to prevent progression. Late disseminated infection can be associated with permanent damage to the nervous and musculoskeletal systems.”

_______________________________

Shapiro quotes in the Boston Globe article:

“These days, it’s Lyme that gets much of the attention — its catch-all, explanatory power supercharged by the Internet. “If your nose falls off,” Shapiro says, “you can find out that Lyme disease makes your nose fall off.”
_______________________

Dr. Shapiro, it appears that you have a long history of similar quotes (verbal diarrhea) which have been archived on the Internet:

Memorable and Not So Memorable Quotes by Lyme Disease Denialists

https://lyme.kaiserpapers.org/memorable-quotes-by-lyme-disease-denialists.html#Shapiro

_______________________

All Tuttle family members advanced to late stage Lyme before obtaining a diagnosis after years of deteriorating health. If we hadn’t met Dr. Sam Donta who spent a career studying Lyme disease at BU School of Medicine, none of us would have been treated.

  • None of us tested positive for Lyme disease under the current FDA approved two-tier testing algorithm as we did not meet the strict CDC Western blot criteria for positive results. (2 out of 3 IgM bands and 5 out of 10 IgG bands)
  • Our daughter developed an attention deficit disorder so severe that she could no longer read a chapter and retain what was read. A stroke-like episode landed her in the hospital and an MRI revealed white matter lesions but an astute neurologist recognized that these lesions did not resemble the lesions found in MS patients.
  • My wife could barely walk up a flight of stairs without excruciating knee pain and we thought for certain that she would require knee replacement surgery.
I’m happy to report that my wife has fully recovered with no remaining symptoms but that was only achieved after two years of antibiotics. My daughter reached similar results but her recovery took three years of antibiotics.

As for my case of chronic Lyme disease; those details will be summarized at a later date but I will tell you that my insurance claims in 2018 exceeded $600,000.

Earlier this year I was introduced to a gentleman in Salem, NH (Name and phone number available upon request) who had to sell his 1.4 million dollar home on Lake Winnipesaukee in order to treat an entire family of Lyme patients and just last week this story was published:

Mommy, I just want to die:’ Mother recalls daughter’s fight against Lyme disease

By Heather Schlitz, AccuWeather staff writer  Aug 20, 2019

https://www.accuweather.com/en/weather-news/mommy-i-just-want-to-die-mother-recalls-daughters-fight-against-lyme-disease/70009099?fbclid=IwAR0T-J4Z0AAUQn2J6uZU3m7JB1OrYnp3T0mZHl9Nz_gy2EPcGewvTKD9PqA

The Lecrones emptied their bank accounts to pay for the uninsured doctor’s visits and to keep injecting $5,000-a-month Rocephin, an antibiotic, into Nicole’s IV. They lost their house and 401(k). Jennifer’s husband drove a truck for 15 hours a day. Jennifer’s oldest daughter, a high school student and varsity soccer player, gave her mom the paychecks she earned from working part-time at Subway and told her mom to use it to buy groceries and pay bills. The family struggled to function as Nicole languished in bed.

__________________

So I ask the question Dr. Shapiro, What is your motivation for downplaying the severity of Lyme disease?

Carl Tuttle

Lyme Endemic Hudson, NH

Cc: Brian McGrory, editor-in-chief

Cynthia L. Sears, MD, FIDSA, President, IDSA

Tick-Borne Disease Working Group

Daniel Dutko, lead attorney Lisa Torrey vs IDSA lawsuit

Court document:  https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0

Reference:

Subjective symptoms after treatment of early Lyme disease.

https://www.ncbi.nlm.nih.gov/pubmed/20102996

Gary Wormser, New York Medical College

_______________________

Current but faulty CDC 2-tiered Lyme Lyme testing is needed to conceal persistent infection being experienced by many  patients.

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25081995?

Medscape: “Lyme Testing Gets Fast and Easy”

SEP 17, 2019 — 

Today’s letter to Auwaerter with Cc: to the Tick-Borne Disease Working Group……

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: pauwaert@jhmi.edu
Cc: tickbornedisease@hhs.gov (98 Undisclosed recipients)
Date: September 17, 2019 at 9:04 AM
Subject: Medscape: “Lyme Testing Gets Fast and Easy”

COMMENTARY

Lyme Testing Gets Fast and Easy

Paul G. Auwaerter, MD

https://www.medscape.com/viewarticle/917726

“When the test was examined for both early Lyme disease and later noncutaneous Lyme disease, it performed as well—if not a bit better—in detecting identifiable antibodies against Borrelia burgdorferi, the causative agent of Lyme disease.[2,3]”

Sept 17, 2019

The IDSA Foundation
1300 Wilson Boulevard Suite 300
Arlington, VA 22209
Attn: Paul Auwaerter, vice chair of the IDSA Foundation

Dear Dr. Auwaerter,

I recommend reading the following JAMA article:

Moving From Substantial Equivalence to Substantial Improvement for 510(k) Devices

Rita F. Redberg, MD, MSc1,2,3 ; Sanket S. Dhruva, MD, MHS1,4

JAMA. 2019;322(10):927-928. doi:10.1001/jama.2019.10191

https://jamanetwork.com/journals/jama/fullarticle/2744408

Excerpt:

“Recent Kaiser Health News stories reported that more than 1 million medical device adverse event reports had been sealed from public view by the US Food and Drug Administration (FDA).1 The New York Times recently called for reforms in device regulation in an editorial entitled “80,000 Deaths. 2 Million Injuries. It’s Time for a Reckoning on Medical Devices.”2

___________________

You did not mention the fact that humans do not produce antibodies to Lyme disease for 4-6 weeks after a tick bite; by the time serology tests are positive, the spirochetes have already invaded various deep tissues, like those in syphilis, and are hard to eradicate with antibiotics.

Half the tests come back negative when the patient is actually infected. [1] (No better than a coin toss!)

  1. Serology is inappropriate for a disease that causes death [2]
  2. severe disability [3] as reported by the patient community for the past three decades and exposed in the documentary Under or Skin [4]
Serology however is absolutely essential for concealing persistent infection (chronic Lyme disease) [5] as the test cannot be used to gauge treatment failure or success.

Where is the escalation process to develop direct detection methods and find new treatment approaches for a disease that is destroying lives, ending careers while leaving its victim in financial ruin?
Carl Tuttle

Lyme Endemic Hudson, NH

Cc: Medscape Editorial Staff

REFERENCES (Please read them!)

1. Commercial test kits for detection of Lyme borreliosis: a meta-analysis of test accuracy.

https://www.ncbi.nlm.nih.gov/pubmed/27920571

2. Wrongful death suit shows pitfalls of IDSA Lyme guidelines

https://www.lymedisease.org/elone-wrongful-death-lawsuit-lyme/

17 year-old Joseph Elone did not develop a bulls-eye rash and had a negative antibody test for Lyme disease.

3. Latent Lyme Disease Resulting in Chronic Arthritis and Early Career Termination in a United States Army Officer 

https://academic.oup.com/milmed/advance-article/doi/10.1093/milmed/usz026/5370051?searchresult=1

4. Under Our Skin – Extended Trailer

https://www.youtube.com/watch?v=sxWgS0XLVqw&feature=player_embedded

5. Seronegative Chronic Relapsing Neuroborreliosis.

https://www.ncbi.nlm.nih.gov/pubmed/7796837

Albert Einstein College of Medicine, Published 1995

Category:

Activism, Lyme, Treatment