Archive for the ‘Treatment’ Category

NIH Strategic Plan For Tickborne Disease Research

NIH STRATEGIC PLAN FOR TICKBORNE DISEASE RESEARCH

October 9, 2019

https://www.niaid.nih.gov/sites/default/files/NIH-Strategic-Plan-Tickborne-Disease-Research-2019.pdf

Please see link for:

  • Executive Summary   
  • Introduction
  • NIH Strategic Plan for Tickborne Disease 
  • Strategic Priority 1: Improve Fundamental Knowledge of TBDs
  • Strategic Priority 2: Advance Research to Improve Detection & Diagnosis of TBDs
  • Strategic Priority 3: Accelerate Research to Improve Prevention of TBDs
  • Strategic Priority 4: Support Research to Advance Treatment of TBDs
  • Strategic Priority 5: Develop tools & resources to Advance TBD research
  • Conclusion
  • Appendices 

Some respondents expressed a desire for greater transparency in the research planning and implementation processes, whereas others suggested changes to the peer review process to include wider representation from the TBD community, such as advocacy group representatives, community physicians, or members of the general public.

To which we all said, AMEN!

Disulfiram Psychosis Update

Disulfiram_3D_ballDisulfiram: 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 55K, so please spread the word to anyone on Disulfiram or considering it.

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/

 

 

 

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
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 LymeBartonella 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/

 

 

The Chemical Imbalance Myth and Antidepressant Harm

https://articles.mercola.com/sites/articles/archive/2019/09/19/depression-chemical-imbalance-myth.aspx?

The Chemical Imbalance Myth and Antidepressant Harm

September 19, 2019

Analysis by Dr. Joseph MercolaFact Checked
depression chemical imbalance myth

STORY AT-A-GLANCE

  • An estimated 17.3 million American adults (7.1% of the adult population), experienced at least one major depressive episode in 2017. The highest rates are reported among those aged between 18 and 25
  • The vast majority are prescribed antidepressant drugs, despite the fact there’s virtually no evidence to suggest they provide meaningful help, and plenty of evidence showing the harms are greater than patients are being told
  • Hundreds of thousands of toddlers are also being medicated with powerful psychiatric drugs, raising serious ethical questions, along with questions about the future mental and physical health of these children
  • There’s no scientific evidence to suggest depression is the result of a chemical imbalance in your brain. A lot of the evidence suggests unhealthy living conditions are at the heart of the problem
  • Antidepressants are not beneficial in the long term and antipsychotic drugs worsen outcomes over the long term in those diagnosed with psychotic disorders such as schizophrenia

In the U.S., an estimated 17.3 million American adults (7.1% of the adult population), experienced at least one major depressive episode in 2017.1 The highest rates are reported among those aged between 18 and 25.2 However, not only is there evidence that depression is vastly overdiagnosed, but there’s also evidence showing it’s routinely mistreated.

With regard to overdiagnosis, one 2013 study3 found only 38.4% of participants with clinician-identified depression actually met the DSM-4 criteria for a major depressive episode, and only 14.3% of seniors 65 and older met the criteria.

As for treatment, the vast majority are prescribed antidepressant drugs, despite the fact there’s virtually no evidence to suggest they provide meaningful help, and plenty of evidence showing the harms are greater than patients are being told.

According to a 2017 study,4 1 in 6 Americans between the ages of 18 and 85 were on psychiatric drugs, most of them antidepressants, and 84.3% reported long-term use (three years or more). Out of 242 million U.S. adults, 12% were found to have filled one or more prescriptions for an antidepressant, specifically, in 2013.

According to data5 presented by a watchdog group, hundreds of thousands of toddlers are also being medicated with powerful psychiatric drugs, raising serious ethical questions, along with questions about the future mental and physical health of these children.

Recent studies are also shedding much needed light on the addictive nature of many antidepressants, and demonstrate that the benefits of these drugs have been overblown while their side effects — including suicidal ideation — and have been downplayed and ignored for decades, placing patients at unnecessary risk.

The Chemical Imbalance Myth

One researcher responsible for raising awareness about these important mental health issues is professor Peter C. Gøtzsche, a Danish physician-researcher and outspoken critic of the drug industry (as his book, “Deadly Medicines and Organized Crime: How Big Pharma Has Corrupted Healthcare,”6 suggests).

Gøtzsche helped found the Cochrane Collaboration in 1993 and later launched the Nordic Cochrane Centre. In 2018, he was expelled by the Cochrane governing board following the publication of a scathing critique of a Cochrane review of the HPV vaccine, in which he and his coauthors pointed out several methodological flaws and conflicts of interest.

Over the past several years, Gøtzsche has published a number of scientific papers on antidepressants and media articles and a book discussing the findings. In a June 28, 2019 article,7Gøtzsche addresses “the harmful myth” about chemical imbalances — a debunked hypothesis that continues to drive the use of antidepressants to this day. He writes, in part:8

“Psychiatrists routinely tell their patients that they are ill because they have a chemical imbalance in the brain and they will receive a drug that fixes this …

Last summer, one of my researchers and I collected information about depression from 39 popular websites in 10 countries, and we found that 29 (74%) websites attributed depression to a chemical imbalance or claimed that antidepressants could fix or correct that imbalance …

It has never been possible to show that common mental disorders start with a chemical imbalance in the brain. The studies that have claimed this are all unreliable.9

A difference in dopamine levels, for example, between patients with schizophrenia and healthy people cannot tell us anything about what started the psychosis … [I]f a lion attacks us, we get terribly frightened and produce stress hormones, but this does not prove that it was the stress hormones that made us scared.

People with psychoses have often suffered traumatic experiences in the past, so we should see these traumas as contributing causal factors and not reduce suffering to some biochemical imbalance that, if it exists at all, is more likely to be the result of the psychosis rather than its cause.10

The myth about chemical imbalance is very harmful. It makes people believe there is something seriously wrong with them, and sometimes they are even told that it is hereditary.

The result of this is that patients continue to take harmful drugs, year after year, perhaps even for the entirety of their lives. They fear what would happen if they stopped, particularly when the psychiatrists have told them that their situation is like patients with diabetes needing insulin.” 


Real Cause of Depression Is Typically Ignored

According to Gøtzsche, there is no known mental health issue that is caused by an imbalance of brain chemicals. In many cases, the true cause is unknown, but “very often, it is a response to unhealthy living conditions,” he writes.11

He also cites the book,12 “Anxiety — The Inside Story: How Biological Psychiatry Got It Wrong,” written by Dr. Niall McLaren, in which the author shows that anxiety is a major factor in and trigger of most psychiatric disorders.

“A psychiatrist I respect highly, who only uses psychiatric drugs in rare cases … has said that most people are depressed because they live depressing lives,” Gøtzsche writes.

“No drug can help them live better lives. It has never been shown in placebo-controlled trials that a psychiatric drug can improve people’s lives — e.g., help them return to work, improve their social relationships or performance at school, or prevent crime and delinquency. The drugs worsen people’s lives, at least in the long run.13

Gøtzsche rightfully points out that antipsychotic drugs create chemical imbalances; they don’t fix them. As a group, they’re also somewhat misnamed, as they do not address psychotic states. Rather, they are tranquilizers, rendering the patient passive. However, calming the patient down does not actually help them heal the underlying trauma that, in many cases, is what triggered the psychosis in the first place.

As noted in one 2012 meta-analysis14 of studies looking at childhood trauma — including sexual abuse, physical abuse, emotional/psychological abuse, neglect, parental death and bullying — and subsequent risk of psychosis:

“There were significant associations between adversity and psychosis across all research designs … Patients with psychosis were 2.72 times more likely to have been exposed to childhood adversity than controls … The estimated population attributable risk was 33% (16%-47%). These findings indicate that childhood adversity is strongly associated with increased risk for psychosis.”

Economy of Influence in Psychiatry

A related article,15 written by investigative journalist Robert Whitaker in 2017, addresses the “economy of influence” driving the use of antidepressant drugs in psychiatric treatment — and the “social injury” that results. As noted by Whitaker, mental disorders were initially categorized according to a disease model in 1980 by the American Psychiatric Association.

“We’re all familiar with the second ‘economy of influence’ that has exerted a corrupting influence on psychiatry — pharmaceutical money — but I believe the guild influence is really the bigger problem,” he writes.

Whitaker details the corruption within the APA in his book “Psychiatry Under the Influence,” one facet of which is “the false story told to the public about drugs that fixed chemical imbalances in the brain.” Other forms of corrupt behavior include:

  • The biased designs of clinical trials to achieve a predetermined result
  • Spinning results to support preconceived conclusions
  • Hiding poor long-term outcomes
  • Expanding diagnostic categories for the purpose of commercial gain
  • Creating clinical trial guidelines that promote drug use

In his article, Whitaker goes on to dissect a 2017 review16 published in the American Journal of Psychiatry, which Whitaker claims “defends the profession’s current protocols for prescribing antipsychotics, which includes their regular long-term use.”

As Whitaker points out, there’s ample evidence showing antipsychotic drugs worsen outcomes over the long term in those diagnosed with psychotic disorders such as schizophrenia.

The review in question, led by Dr. Jeffrey A. Lieberman, was aimed at answering persistent questions raised by the mounting of such evidence. Alas, their conclusions dismissed concerns that the current drug paradigm might be doing more harm than good.

“In a subsequent press release and a video for a Medscape commentary, Lieberman has touted it as proving that antipsychotics provide a great benefit, psychiatry’s protocols are just fine, and that the critics are ‘nefarious’ individuals intent on doing harm,” Whitaker writes.17

The Scientific Bias of Psychiatric Treatment

Five of the eight researchers listed on the review have financial ties to drug companies, three are speakers for multiple drug companies and all eight are psychiatrists, “and thus there is a ‘guild’ interest present in this review, given that they are investigating whether one of their treatments is harmful over the long-term,” Whitaker notes.18

Not surprisingly, the review ignored studies showing negative effects, including studies showing antipsychotics have a detrimental effect on brain volume. What’s more, while withdrawal studies support the use of antipsychotics as maintenance therapy over the long term, these studies do not address how the drugs affect patients’ long-term health.

“They simply reveal that once a person has stabilized on the medication, going abruptly off the drug is likely to lead to relapse,” Whitaker writes.19 “The focus on long-term outcomes, at least as presented by critics, provides evidence that psychiatry should adopt a selective-use protocol.

If first-episode patients are not immediately put on antipsychotics, there is a significant percentage that will recover, and this ‘spontaneous recovery’ puts them onto a good long-term course. As for patients treated with the medications, the goal would be to minimize long-term use, as there is evidence that antipsychotics, on the whole, worsen long-term outcomes.”

Vast Majority of Psychotic Patients Are Harmed, Not Helped

In his deconstruction of Lieberman’s review, Whitaker details how biased thinking influenced the review’s conclusions. It’s a rather long article, but well worth reading through if you want to understand how a scientific review can be skewed to accord with a preconceived view.

Details I want to highlight, however, include findings relating to the number needed to treat (NNT) and the percentage of patients harmed by the routine use of antipsychotic drugs as a first-line treatment.

As noted by Whitaker, while placebo-controlled studies reveal the effectiveness of a drug compared to an inert substance, they do not effectively reveal the ratio of benefit versus harm among the patient population. NNT refers to the number of patients that have to take the drug in order to get one positive response.

A meta-analysis cited in Lieberman’s review had an NNT of 6, meaning that six patients must take the drug in order for one to benefit from the treatment. The remaining five patients — 83% — are potentially harmed by the treatment. As noted by Whitaker:20

“The point … is this: reviewers seeking to promote their drug treatment as effective will look solely at whether it produces a superior response to placebo. This leads to a one-size-fits-all protocol.

Reviewers that want to assess the benefit-harm effect of the treatment on all patients will look at NNT numbers. In this instance, the NNT calculations argue for selective use of the drugs …”

Antidepressants Are Not Beneficial in the Long Term

While typically not as destructive as antipsychotics, antidepressants also leave a trail of destruction in their wake. A systematic review21 by Gøtzsche published in 2019 found studies assessing harm from selective serotonin reuptake inhibitors (SSRIs) fail to provide a clear and accurate picture of the harms, and therefore “cannot be used to investigate persistent harms of antidepressants.”

In this review, Gøtzsche and colleagues sought to assess “harms of SSRIs … that persist after end of drug intake.” The primary outcomes included mortality, functional outcomes, quality of life and core psychiatric events. In all, 22 papers on 12 SSRI trials were included. Gøtzsche found several distinct problems with these trials. For starters, only two of the 12 trials had a drop-out rate below 20%.

Gøtzsche and his team also note that “Outcome reporting was less thorough during follow-up than for the intervention period and only two trials maintained the blind during follow-up.” Importantly, though, all of the 22 papers came to the conclusion that “the drugs were not beneficial in the long term.”

Another important finding was that all trials either “reported harms outcomes selectively or did not report any,” and “Only two trials reported on any of our primary outcomes (school attendance and number of heavy drinking days).”

Antidepressants Are More Addictive Than Admitted

In a June 4, 2019, article,22 “The Depression Pill Epidemic,” Gøtzsche writes that antidepressant drugs:

“… do not have relevant effects on depression; they increase the risk of suicide and violence; and they make it more difficult for patients to live normal lives.23 They should therefore be avoided.

We have been fooled by the drug industry, corrupt doctors on industry payroll, and by our drug regulators.24 Surely, many patients and doctors believe the pills are helpful, but they cannot know this, because people tend to become much better with time even if they are not treated.25

This is why we need placebo-controlled trials to find out what the drugs do to people. Unfortunately, virtually all trials are flawed, exaggerate the benefits of the drugs, and underestimate their harms.26

Addictive Nature of Antidepressants Skews Results

In his article,27 Gøtzsche reviews several of the strategies used in antidepressant drug trials to exaggerate benefits and underestimate the harms. One little-known truth that helps skew study results in the drug’s favor is the fact that antidepressants tend to be far more addictive than officially admitted. He explains how this conveniently hides the skewing of results as follows:28

Virtually all patients in the trials are already on a drug similar to the one being tested against placebo. Therefore, as the drugs are addictive, some of the patients will get abstinence symptoms … when randomized to placebo …

These abstinence symptoms are very similar to those patients experience when they try to stop benzodiazepines. It is no wonder that new drugs outperform the placebo in patients who have experienced harm as a result of cold turkey effects.

To find out how long patients need to continue taking drugs, so-called maintenance (withdrawal) studies have been carried out, but such studies also are compromised by cold turkey effects. Leading psychiatrists don’t understand this, or they pretend they don’t.

Most interpret the maintenance studies of depression pills to mean that these drugs are very effective at preventing new episodes of depression and that patients should therefore continue taking the drugs for years or even for life.”

Scientific Literature Supports Reality of User Complaints

Over the years, several studies on the dependence and withdrawal reactions associated with SSRIs and other psychiatric drugs have been published, including the following:

In a 2011 paper29 in the journal Addiction, Gøtzsche and his team looked at the difference between dependence and withdrawal reactions by comparing benzodiazepines and SSRIs. Benzodiazepines are known to cause dependence, while SSRIs are said to not be addictive.

Despite such claims, Gøtzsche’s team found that “discontinuation symptoms were described with similar terms for benzodiazepines and SSRIs and were very similar for 37 of 42 identified symptoms described as withdrawal reactions,” which led them to conclude that:

“Withdrawal reactions to selective serotonin re‐uptake inhibitors appear to be similar to those for benzodiazepines; referring to these reactions as part of a dependence syndrome in the case of benzodiazepines, but not selective serotonin re‐uptake inhibitors, does not seem rational.”

Two years later, in 2013, Gøtzsche’s team published a paper30 in the International Journal of Risk & Safety in Medicine, in which they analyzed “communications from drug agencies about benzodiazepine and SSRI withdrawal reactions over time.”

By searching the websites of drug agencies in Europe, the U.S., UK and Denmark, they found that it took years before drug regulators finally acknowledged the reality of benzodiazepine dependence and SSRI withdrawal reactions and began informing prescribers and patients about these risks.

A significant part of the problem, they found, is that drug agencies rely on spontaneous reporting of adverse effects, which “leads to underestimation and delayed information about the problems.”

In conclusion, they state that “Given the experience with the benzodiazepines, we believe the regulatory bodies should have required studies from the manufacturers that could have elucidated the dependence potential of the SSRIs before marketing authorization was granted.”

A 2019 paper31 in the Epidemiology and Psychiatric Sciences journal notes “It took almost two decades after the SSRIs entered the market for the first systematic review to be published.” It also points out that reviews claiming withdrawal effects to be mild, brief in duration and rare “was at odds with the sparse but growing evidence base.”

In reality, “What the scientific literature reveals is in close agreement with the thousands of service user testimonies available online in large forums. It suggests that withdrawal reactions are quite common, that they may last from a few weeks to several months or even longer, and that they are often severe.”

Antidepressants Increase Your Risk of Suicide and Violence

In his June 4 article,32 Gøtzsche also stresses the fact that antidepressants can be lethal. In one of his studies,33 published in 2016, he found antidepressants “double the occurrence of events that can lead to suicide and violence in healthy adult volunteers.”

Other research34 has shown they “increase aggression in children and adolescents by a factor of 2 to 3 — an important finding considering the many school shootings where the killers were on depression pills,” Gøtzsche writes.

In middle-aged women with stress urinary incontinence, the selective serotonin and norepinephrine reuptake inhibitor (SNRI) duloxetine, which is also used to treat incontinence, has been shown to double the risk of a psychotic episode and increase the risk of violence and suicide four to five times,35 leading the authors to conclude that harms outweighed the benefits.

“I have described the dirty tricks and scientific dishonesty involved when drug companies and leading psychiatrists try convincing us that these drugs protect against suicide and other forms of violence,36 Gøtzsche writes.37 “Even the FDA was forced to give in when it admitted in 2007, at least indirectly, that depression pills can cause suicide and madness at any age.

There is no doubt that the massive use of depression pills is harmful. In all countries where this relationship has been examined, the sharp rise in disability pensions due to psychiatric disorders has coincided with the rise of psychiatric drug usage, and depression pills are those which are used the most by far. This is not what one would expect if the drugs were helpful.”

Drugmaker Lied About Paxil’s Suicide Risk

In 2017, Wendy Dolin was awarded $3 million by a jury in a lawsuit against GlaxoSmithKline, the maker of Paxil. Dolin’s husband committed suicide six days after taking his first dose of a Paxil generic, and evidence brought forth in the case convincingly showed his suicide was the result of the drug, not emotional stress or mental illness.38

The legal team behind that victory, Baum Hedlund Aristei Goldman, is also representing other victims of Paxil-induced violence and death. At the time, attorney R. Brent Wisner said:39

“The Dolin verdict sent a clear message to GSK and other drug manufacturers that hiding data and manipulating science will not be tolerated … If you create a drug and know that it poses serious risks, regardless of whether consumers use the brand name or generic version of that drug, you have a duty to warn.”

GSK’s own clinical placebo-controlled trials actually revealed subjects on Paxil had nearly nine times the risk of attempting or committing suicide than the placebo group. To gain drug approval, GSK misrepresented this shocking data, falsely reporting a higher number of suicide attempts in the placebo group and deleting some of the suicide attempts in the drug group.

An internal GSK analysis of its suicide data also showed that “patients taking Paxil were nearly seven times more likely to attempt suicide than those on placebo,” Baum Hedlund Aristei Goldman reports, adding:40

“Jurors in the Dolin trial also heard from psychiatrist David Healy, one of the world’s foremost experts on Paxil and drugs in its class … Healy told the jurors that Paxil and drugs like it can create in some people a state of extreme ’emotional turmoil’ and intense inner restlessness known as akathisia …

‘People have described it like a state worse than death. Death will be a blessed relief. I want to jump out of my skin,’ Dr. Healy said. Healthy volunteer studies have found that akathisia can happen even to people with no psychiatric condition who take the drug …

Another Paxil side effect known to increase the risk of suicide is emotional blunting … apathy or emotional indifference … [E]motional blunting, combined with akathisia, can lead to a mental state in which an individual has thoughts of harming themselves or others, but is ‘numbed’ to the consequences of their actions. Drugs in the Paxil class can also cause someone to ‘go psychotic, become delirious,’ Dr. Healy explained.”

Hundreds of Thousands of Toddlers on Psychiatric Drugs

Considering the many serious psychological and physical risks associated with psychiatric drugs, it’s shocking to learn that hundreds of thousands of American toddlers are on them. In 2014, the Citizens Commission on Human Rights, a mental health watchdog group, highlighted data showing that in 2013:41

  • 274,000 babies aged 1 and younger were given psychiatric drugs — Of these, 249,699 were on anti-anxiety meds like Xanax; 26,406 were on antidepressants such as Prozac or Paxil, 1,422 were on ADHD drugs such as Ritalin and Adderall, and 654 were on antipsychotics such as Risperdal and Zyprexa
  • In the toddler category (2- to 3-year-olds), 318,997 were on anti-anxiety drugs, 46,102 were on antidepressants, 10,000 were prescribed ADHD drugs and 3,760 were on antipsychotics
  • Among children aged 5 and younger, 1,080,168 were on psychiatric drugs

These are shocking figures that challenge logic. How and why are so many children, babies even, on addictive and dangerously mind-altering medications? Considering these statistics are 6 years old, chances are they’re even higher today. Just what will happen to all of these youngsters as they grow up? As mentioned in the article:42

“When it comes to the psychiatric drugs used to treat ADHD, these are referred to as ‘kiddie cocaine’ for a reason. Ritalin (methylphenidate), Adderall (amphetamine) and Concerta are all considered by the federal government as Schedule II drugs — the most addictive.

ADHD drugs also have serious side effects such as agitation, mania, aggressive or hostile behavior, seizures, hallucinations, and even sudden death, according to the National Institutes of Health …

As far as antipsychotics, antianxiety drugs and antidepressants, the FDA and international drug regulatory agencies cite side effects including, but not limited to, psychosis, mania, suicidal ideation, heart attack, stroke, diabetes, and even sudden death.”

Children Increasingly Prescribed Psych Drugs Off-Label

Making matters even worse, recent research shows the number of children being prescribed medication off-label is also on the rise. An example offered by StudyFinds.org,43 which reported the findings, is “a doctor recommending antidepressant medication for ADHD symptoms.”

The study,44 published in the journal Pediatrics, looked at trends in off-label drug prescriptions made for children under the age of 18 by office-based physicians between 2006 and 2015. Findings revealed:

“Physicians ordered ≥1 off-label systemic drug at 18.5% of visits, usually (74.6%) because of unapproved conditions. Off-label ordering was most common proportionally in neonates (83%) and in absolute terms among adolescents (322 orders out of 1000 visits).

Off-label ordering was associated with female sex, subspecialists, polypharmacy, and chronic conditions. Rates and reasons for off-label orders varied considerably by age.

Relative and absolute rates of off-label orders rose over time. Among common classes, off-label orders for antihistamines and several psychotropics increased over time …

US office-based physicians have ordered systemic drugs off label for children at increasing rates, most often for unapproved conditions, despite recent efforts to increase evidence and drug approvals for children.”

The researchers were taken aback by the findings, and expressed serious concern over this trend. While legal, many of the drugs prescribed off-label have not been properly tested to ensure safety and efficacy for young children and adolescents.

As noted by senior author Daniel Horton, assistant professor of pediatrics and pediatric rheumatologist at Rutgers Robert Wood Johnson Medical School, “We don’t always understand how off-label medications will affect children, who don’t always respond to medications as adults do. They may not respond as desired to these drugs and could experience harmful effects.”

Educate Yourself About the Risks

If you, your child, or another family member is on a psychiatric drug, I urge you to educate yourself about the true risks, and to consider switching to safer alternatives. When it comes to children, I cannot fathom a situation in which a toddler would need a psychiatric drug and I find it shocking that there are so many doctors out there that, based on a subjective evaluation, would deem a psychiatric drug necessary.

________________

For More:  https://madisonarealymesupportgroup.com/2019/03/22/newly-prescribed-adhd-medications-may-cause-psychosis-study-finds/

https://madisonarealymesupportgroup.com/2018/04/12/psychiatric-drugs-create-violence-suicide-school-shootings-other-acts-of-senseless-violence/

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2018/10/03/lyme-patient-misdiagnosed-with-anxiety-depression/

https://madisonarealymesupportgroup.com/2019/05/11/irish-student-admitted-to-hospital-for-depression-actually-had-a-deadly-brain-infection/

https://madisonarealymesupportgroup.com/2019/06/05/can-lyme-disease-cause-depression/

 

 

 

 

 

 

 

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

Dr. Liegner Interview on Disulfiram

Approx. 2 hours 45 min.

Dr Kenneth Liegner generously spends almost 3 hours on Sunday September 8th,  2019answering questions posed by the Disulfiram for Lyme Support Group community.  https://www.facebook.com/groups/dsf4lyme/

Important information

You should not use Antabuse if you have recently taken metronidazole or paraldehyde, or if you have consumed any foods or products that contain alcohol (mouthwash, cough medicine, cooking wine or vinegar, certain desserts, and others).

For more:  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/

**Comment** There appears to be a shortage and potential price hike on disulfiram (Anatuse) currently. After speaking with numerous pharmacists and nationwide advocates it also appears to be at a corporate level.

I was able to obtain it from Pharmacyrxworld.com (Canadian Pharmacy) for $37 for 100 tablets of 500mg. You NEED a prescription for this from a doctor and it takes weeks to a month of obtain. You need to titrate up slowly due to potential side-effects/herxing and work with a knowledgable practitioner.

 

 

 

 

Wrongful Dealth Suit Shows Pitfalls of IDSA Lyme Guidelines

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

Wrongful death suit shows pitfalls of IDSA Lyme guidelines