Archive for the ‘Treatment’ Category

PDF of Dr. Sue Massie’s Webinar on Lyme/MSIDS

https://madisonarealymesupportgroup.com/2017/11/16/free-webinar-on-lyme-dr-sue-massie/ and https://madisonarealymesupportgroup.com/2017/11/30/dr-sue-massie-lyme-webinar/

Back in November, I posed info for a webinar by Dr. Sue Massie, also infected, on Lyme/MSIDS (in above link).  It was excellent and about an hour and a half long with helpful information.  I just stumbled upon her pdf that accompanies the webinar:  https://tdinj.com/wp-content/uploads/2017/12/Sue-Massie-Lyme-The-Great-Imitator.pdf

Category:

Activism, Lyme, Treatment

Leaky Gut – Free Guide

https://info.dralexrinehart.com/articles/understanding-leaky-gut-autoimmunity-and-beyond?

by Dr. Alex Rinehart

Understanding Leaky Gut, Autoimmunity, and Beyond

leaky gut.jpg

Leaky gut is when the intestines absorb bacteria, toxins, and undigested food into the bloodstream.

Once in the bloodstream, these materials trigger inflammation and abnormal immune responses.

Leaky gut has been linked to a number of health problems like Crohn’s disease, irritable bowel syndrome, depression, chronic fatigue syndrome, and virtually every autoimmune disease.

If you suffer with any of those conditions, a good treatment plan must address leaky gut.

Pioneering researcher and medical doctor Dr. Alessio Fasano published a landmark paper in 2012 detailing the the integral link between leaky gut and autoimmune disease.

The paper boldly suggests that autoimmune disease cannot exist without leaky gut.

Normally, a primary job of the intestines is to block the absorption of larger material. It becomes “leaky” by absorbing bigger proteins than it should allow in the blood.

Once in the bloodstream, these materials invite immune reactions. Along the way, the body starts mistaking healthy tissues as enemies too.

This “autoimmunity” can target any tissue in the body.

  • The thyroid? Hashimoto’s or Graves’ thyroiditis.
  • The joints? Rheumatoid arthritis.
  • The gut? Celiac disease or Ulcerative colitis.
  • The pancreas? Type I Diabetes
  • Connective tissue? Scleroderma
  • Red blood cells? Hemolytic anemia

So while autoimmune diseases are characterized by the types of tissues the body is attacking – these attacks start by leaky gut.

This means that an autoimmune thyroid condition is not a thyroid problem. Rheumatoid arthritis is not a joint problem. Autoimmunity to ANY tissue is not a problem with that tissue

Autoimmunity is an IMMUNE problem mediated by GUT HEALTH. To manage autoimmune disease successfully – fix leaky gut.

How to Manage Leaky Gut

Some genetic factors like HLA-DQ2 or HLA-DQ8 can increase your risk for leaky gut; yet, ultimately those who carry leaky gut markers are just more easily triggered by lifestyle factors.

Lifestyle factors for leaky gut include.

  • Stress
  • Food intolerance (wheat, dairy, corn, etc)
  • Sugar
  • Alcohol
  • Drugs (especially NSAIDs and PPIs)
  • Infections (bacterial, yeast, fungal, viral and parasitic).
  • Imbalance of Gut Flora, Small Intestinal Bowel Overgrowth/Small Intestinal Fungal Overgrowth
  • Other triggers like radiation exposure, poor sleep, vitamin and mineral deficiencies, and overexercise.

To heal leaky gut, simply follow the bullets above like a roadmap.

Manage stress, limit alcohol and sugar, eat a diverse, nutrient-dense, and low-allergy diet, sleep selfishly, and protect those friendly microbes in your gut!

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**Comment**

Go to link at beginning of article for your Free Guide:  The 5 Most Overlooked Consequences of a Broken Gut

 

For More:  https://madisonarealymesupportgroup.com/2018/01/03/the-invisible-universe-of-the-human-microbiome-msm/

 

 

Category:

Activism, diet and nutrition, Gut Health, Lyme, Treatment

Hopkin’s Study Shows Severe Symptoms in Some After Lyme Treatment

https://www.hopkinsmedicine.org/news/media/releases/study_shows_evidence_of_severe_and_lingering_symptoms_in_some_after_treatment_for_lyme_disease?

Study Shows Evidence of Severe and Lingering Symptoms in Some after Treatment for Lyme Disease

Release Date: February 1, 2018

SHARE FAST FACTS

  • Researchers say that post-treatment Lyme disease syndrome is a real disorder with real symptoms.
  • Fatigue, pain, insomnia and depression seem to persist over long periods of time in some people with Lymedisease.
  • Findings published in @FrontMedicine could spur further investigation into cause of persistent symptoms of Lyme disease.
Lyme disease credit: iStock
Researchers report that a tick-borne illness known as Post Treatment Lyme Disease Syndrome (PTLDS) is a real disorder with real symptoms.

In a study of 61 people treated for the bacteria that causes Lyme disease, Johns Hopkins researchers conclude that fatigue, pain, insomnia and depression do indeed persist over long periods of time for some people, despite largely normal physical exams and clinical laboratory testing.

“Post-treatment Lyme disease syndrome (PTLDS) is a real disorder that causes severe symptoms in the absence of clinically detectable infection,” says John N. Aucott, M.D., associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center.

The findings, published in the December issue of Frontiers in Medicine, could spur further investigation into the cause of persistent symptoms, a source of medical controversy. As Lyme disease rates have steadily climbed in the United States since it was first recognized in the mid-1970s, so have reports of a collection of symptoms that patients commonly refer to as chronic Lyme disease. Experts in the field have questioned the validity of this term because of the lack of direct evidence in this group of patients of ongoing infection with Borrelia burgdorferi, the bacterium that causes Lyme disease.

Efforts to better understand patients with these symptoms have largely failed, says Aucott, because patients grouped under the umbrella term “chronic Lyme disease” could belong to one of various subgroups.

“People have been comparing apples to oranges by grouping all of those with chronic Lyme disease together,” he says. “Our study was designed to compare apples to apples.”

To do that, Aucott and his colleagues first agreed to study individuals with PTLDS, a disorder defined by the Infectious Diseases Society of America as the development of significant fatigue, widespread musculoskeletal pain and/or cognitive difficulties that arise within six months after completion of antibiotic therapy for physician-documented Lyme disease and that last for at least six months. They meticulously gathered prior medical records for evidence of Lyme disease and excluded patients with conditions that may mimic those of PTLDS.

Aucott cautions that because so little is known about the origins of PTLDS, its underlying cause has remained unclear, and a range of hypotheses exist. This study, and the term “PTLDS,” do not define the cause of the condition, but do provide a starting place for future studies.

The researchers recruited 61 patients who were either self- or physician-referred to the Lyme Disease Clinical Research Center at Johns Hopkins and who met the study criteria. Roughly half were women and half were men, ranging in age between 18 and 82. Also recruited were 26 healthy controls, also split nearly evenly between the sexes and about the same ages as the other group, with no clinical history of Lyme disease symptoms and no antibodies to Borrelia burgdorferi that would indicate past or current infection.

For each of these individuals, Aucott and his team ran a comprehensive battery of clinical and laboratory tests. A trained interviewer collected a detailed medical history, and participants received a physical exam that assessed vital signs and examined various organs and joints. They also received an extensive neurological assessment. Laboratory tests checked for general markers of health in their blood as well as antibody markers of past exposure to Lyme disease. Study participants also completed standardized questionnaires that measure the severity of fatigue, pain, sleep disturbance and depression, as well as quality of life.

Aucott says that between the two groups, few clinically significant differences existed in results of the physical exams and clinical laboratory tests, except for an abnormal inability to sense vibrations in some PTLDS patients. The diminished vibratory sensation is a marker for neurologic involvement that has been seen in other studies of Lyme disease

“By and large, all the test and exam results from both the PTLDS patients and the healthy controls were not statistically significantly different by group, including their blood tests and physical exams.” Aucott says. “We found no truly objective markers of PTLDS on any of these clinically available tests.”

However, he says, there were significant differences in the results from the questionnaires. About 50 percent of the PTLDS patients reported severe fatigue, about 28 percent reported severe pain, about 23 percent reported severe cognitive complaints and about 31 percent reported severe sleep difficulty. None of the healthy controls reported any symptoms in the “severe” range. In total, the researchers found 19 symptoms that are not part of the standard PTLDS criteria to be significantly more severe among the study participants with PTLDS than among controls. These included such symptoms as severe sleep difficulty (reported by 32 percent of PTLDS patients), severe neck pain (reported by 8percent of PTLDS patients), severe numbness/tingling in hands or feet (reported by 10 percent of PTLDS patients), severe irritability (reported by 8 percent of PTLDS patients), severe low back pain (reported by 3 percent of PTLDS patients) and severe headache (reported by 17 percent of PTLDS patients).

These symptoms, Aucott says, appear to reflect the significantly higher scores in a measure of depression and significantly lower scores on the SF-36, a widely used 36-item questionnaire that measures health-related quality of life.

“Even though their exams and lab tests didn’t show much in the way of a common or clear biological marker or markers of PTLDS, it’s clear these patients don’t feel well,” says study co-author Kathleen Bechtold, Ph.D., associate professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine. “These symptoms are more severe than what the average non-PTLDS patient is experiencing even on a bad day.”

The findings show distinct differences between PTLDS and the normal aches and pains of daily life, Bechtold adds. Even with no objective laboratory or exam markers, she says, the results of this study suggest that PTLDS can be diagnosed through careful and thorough examination of symptoms.

More accurate identification of the subset of patients with PTLDS would go a long way to improving diagnosis and care of this specific subgroup and eventually to allowing future studies of specific therapies. To this end, Aucott and his group are currently analyzing cognitive testing results and blood samples taken from patients who participated in this study to search for research biomarkers that were not examined in the initial study.

An estimated 300,000 people in the U.S. are diagnosed each year with Lyme disease according to the Centers for Disease Control and Prevention. Of those ideally diagnosed and treated, studies have reported a wide range (5 to 30 percent) of the proportion that goes on to experience PTLDS. In this study, risk factors such as delayed diagnosis and exposure to inappropriate antibiotics and steroids prior to appropriate treatment occurred in over half the PTLDS patients.

Other Johns Hopkins researchers who participated in this study include Alison W. Rebman, Ting Yang, Erica A. Mihm, Mark J. Soloski and Cheryl Novak.

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**Comment**

Hopefully this work will begin to move the tidal wave that has been smashing against patients for 40 years.  The acknowledgement by researchers that people are obviously suffering with numerous severe symptoms despite normal test results is a move in the right direction.

If I had a dollar for every Lyme patient’s normal test, I’d be a millionaire.  This fact is a challenge to explain to patients who often feel as if they are dying, or the pain, fatigue, and cognitive issues are so devastating – they want to die.  

The tests come back normal and their doctors feel smug in telling them their symptoms definitely are not Lyme/MSIDS related – yet we all know they are.  How can you go through life feeling great, get infected, and then your life as you know it comes to an abrupt end?  You still suffer untold miseries despite typical treatment outlined by the IDSA/CDC?  Something is amiss and it must be found.

They used to say approximately 10% go on to develop chronic symptoms – which was bumped up in this study to anywhere from 5-30%.  All I know is everyone I deal with is in this category, so either I’m only getting all the bad ones or the numbers are falsely low.  I surmise the latter.  If you consider all those who are misdiagnosed with things like MS, Lupus, ALS, dementia, Alzheimer’s, fibromyalgia, and other autoimmune disorders, the numbers are falsely low.

One other huge deer fly in the ointment is the involvement of coinfections which make our cases much more complex and difficult to treat:  https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/

https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/

https://madisonarealymesupportgroup.com/2014/11/14/studies-show-why-its-tough-to-treat-lyme-and-co/

So, as I tell patients, “All the doxy in the world isn’t going to cure this.  It’s like taking sand and throwing it into the ocean.”  Don’t get me wrong, doxy is a great front-line drug with action against many pathogens, but researcher Eva Sapi has found doxy to throw the spirochetal form into the cyst form later.  I am afraid this mono-treatment might be setting people up for dementia/Alzheimer’s later on in life.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/  Doxycycline reduced spirochetal structures ∼90% but increased the number of round body (cyst) forms about twofold.

For more on persistent infection: https://madisonarealymesupportgroup.com/2017/08/25/sleeper-cells-the-stringent-response-and-persistence-in-the-borreliella-burgdorferi-enzootic-cycle/

https://madisonarealymesupportgroup.com/2017/08/18/drexel-prof-lyme-persists/

https://madisonarealymesupportgroup.com/2017/12/14/live-bb-found-after-months-of-doxy/

https://madisonarealymesupportgroup.com/2015/09/19/proof-of-borrelia-persistence/

https://madisonarealymesupportgroup.com/2017/12/02/scottish-doctor-gives-insight-on-lyme-msids/ “If you look at major medical microbiology and infectious disease textbooks, they state that after 4 weeks you can’t find the Lyme bacteria anymore. Therefore Lyme is then categorised as ‘post infectious’. But I get back to the point I’ve made before: if you can’t culture it, you cannot know anything about its viability. You do not have a organism specific test (culture or PCR), that guides your ‘test of cure’. How do you say that a bacteria is killed, when you couldn’t grow and measure it in the first place?” “One of the rules of infectious diseases medicine is that once you stop treatment and the patient stays better, they are cured. When they get worse, the infection has returned and they have relapse of infection and need repeat treatment. My ID colleagues live by that rule with most other infections, but not with Lyme.”

Accurate Lyme Disease Treatment:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/  Notice it takes different drugs to kill or impede ALL forms of borrelia.

http://lymeology.com/lyme-101-three-forms-borrelia-corresponding-antibiotics/  Here Dawn Wilson, a former cellular biologist sidelined by Lyme/MSIDS, has a great page explaining it as well.

 

 

 

 

 

Category:

Lyme, research, Treatment

Another CDC Conflict of Interest – Director Resigns

Scandalous CDC director RESIGNS after caught buying shares of vaccine maker Merck while heading the CDC

Wednesday, January 31, 2018 by: 

Image: Scandalous CDC director RESIGNS after caught buying shares of vaccine maker Merck while heading the CDC

(Natural News) As yet more proof that the CDC functions as little more than an extension of the corrupt vaccine industry, CDC director Dr. Brenda Fitzgerald was forced to resign yesterday following a that exposed her ownership of shares of Big Tobacco companies as well as Merck, a prominent vaccine manufacturer whose products are promoted by the CDC.

The gross conflict of interest didn’t stop there, either: Fitzgerald also purchased shares of junk food companies and a tobacco corporation, according to media reports, all while she was serving as director of the CDC. “Documents revealed Fitzgerald had holdings in Reynolds American, British American Tobacco, Imperial Brands, Philip Morris International, and Altria Group,” reports CNBC.

“Dr. Brenda Fitzgerald had also invested money in food and pharmaceutical companies just one month after taking over the job,” reports the UK Daily Mail.

Yes, the head of the CDC bought tobacco stocks and Big Pharma stocks, even when her own decisions at the CDC were neck-deep in gross conflicts of interest related to public health.(The CDC studies and reports on death and disease related to smoking. The corrupt agency also promotes pro-vaccine propaganda while burying all science that reveals vaccine injuries or adverse events.)

The CDC is in bed with junk food companies, vaccine manufacturers and Big Tobacco

This pattern of corruption and collusion is no surprise, given that the director of the CDC’s Division for Heart Disease and Stroke Prevention was caught pushing pseudoscience nonsense that favored Coca-Cola and PepsiCo. The CDC, it turns out, is in bed with junk food companies, tobacco companies and vaccine manufacturers… all while claiming to be working in the interests of “public health.”

As further proof of that, CNBC reports:

Along with her Japan Tobacco purchases, documents confirm Fitzgerald also bought thousands of dollars of shares in several health-care companies, including Merck & Co, Bayer and Humana, which the U.S. Department of Health and Human Services deemed a conflict of interest…

In other words, the head of the CDC stood to profit from vaccines, medications, tobacco use and “disease profits” reaped by health care companies.

As the World Mercury Project explains:

Both Merck and Bayer have a pattern of wreaking havoc on human health while striving to bury the evidence. Merck, for example, manufactures the top-selling but devastating Gardasil vaccine and used statistical gimmicks and other deceptive tactics to conceal Gardasil’s risks. Whistleblowers also have accused Merck of falsifying its mumps vaccine data. Bayer, too, has a track record of “scandal and marketing fraud,” having once paid out millions to the U.S. government in a medical fraud settlement after admitting to overcharging for Bayer’s antibiotic Cipro. Bayer also settled tens of millions after having persisted in selling contaminated blood products to hemophiliacs. At present, Bayer is poised to close a “mega-deal” to merge with Monsanto, which manufactures the glyphosate-containing herbicide RoundUp—both glyphosate and RoundUp’s other ingredients have been shown to be highly toxic.

As this video explains, the CDC actually owns 56 vaccines and profits from pro-vaccine propaganda:

Natural News vindicated yet again for accurately claiming the CDC is tied to vaccine makers

The bombshell news confirms yet again that Natural News has been right all along in reporting the “corruption and collusion” of the CDC and vaccine makers. On January 26, 2017, Natural News published a story entitled CDC works in collusion with vaccine manufacturers… can you really trust their “fake science?”

As that story explains:

If you’ve ever wondered how the CDC can afford to do all that it does, look no further than the CDC Foundation. The organization describes itself as some kind of liaison between the CDC and the private sector, existing solely for public benefit, but a quick look at their list of corporate partners reveals a much more sordid story; a story of fake science that is being propagated for industry benefit. While studying the rather lengthy list of corporate donors — who also sometimes collaborate with the CDC on their project — one might notice that many of them are pharma companies, pesticide makers, and biotech firms.

When one considers the apparent ties the CDC has to Merck — and countless other corporations — it honestly raises doubts for just about anything the federal agency has put their stamp on.

The World Mercury Project adds:

The CDC has its own lengthy history of corruption and deceit and has routinely turned a blind eye to conflicts of interest while it works to “protect the private good.” Although the agency owns 56 patents applicable to vaccines, it has no problem shredding vaccine safety data it doesn’t like, while continuing to serve as the nation’s powerful (and ostensibly “independent”) arbiter of vaccine policy. Julie Gerberding, the doctor who led the CDC from 2002 to 2009 (the time period when the Food and Drug Administration approved Gardasil without proper safety testing), left CDC to become president of Merck Vaccines and subsequently became Merck’s executive vice president for global strategic communications. Gerberding has benefited handsomely from her shares of Merck stock.

Thus, Brenda Fitzgerald’s personal financial stake in companies such as Merck and Bayer only illustrates, in microcosm, the CDC’s longstanding willingness to cozy up to Big Pharma and Big Health Care in defiance of ethics rules.

CDC corruption and collusion with death-causing corporations is now an established fact

With Dr. Fitzgerald’s sudden resignation and credibility implosion, we now have irrefutable proof that top CDC personnel have financial conflicts of interest with with vaccine companies, Big Pharma companies and even junk food companies.This is now an established fact, widely reported across most of the media. (Natural News told you this years ago…)

Watch the CDC lie to Congress about “vaccine safety” in this eye-opening video:

Follow more news on the corruption and criminality of the CDC at CDC.news. Stay informed about the lies and deceptions of the baby-murdering vaccine industry at Vaccines.news.

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**Comment**

And these are the very folks in power over all things Lyme/MSIDS.  Frightening indeed.

https://madisonarealymesupportgroup.com/2016/11/29/spider-attacks-cdc/  CDC scientists expose agency corruption

https://madisonarealymesupportgroup.com/2017/09/25/speaking-of-fake-science-fifty-seven-million-anti-trust-lawsuit-against-cdc-lyme-tests/  An anti-trust law suit of $57 million is being prepared against the CDC. They are accused of deliberately suppressing the use of an accurate DNA direct diagnostics for Lyme disease.

After publishing the 2013 article ‘A simple method for the detection of live Borrelia spirochetes in human blood using classical microscopy techniques’, professor Laane was invited to give a lecture at the 2014 Norvect conference in Oslo. I was present at that conference and still remember how nervous he was. The reason was that several medical professors complained to his university. He was threatened with losing his job, if he would speak at the conference.  In fact, he did not literally speak – as you can see in the movie below – but used performing arts to show the slides of the spirochetes. Professor Laane was fired anyway and his laboratory was closed down.

https://madisonarealymesupportgroup.com/2017/10/06/remembering-dr-masters-the-rebel-for-lyme-patients-who-took-on-the-cdc-single-handedly/  Masters went over the charts with a fine tooth comb and found huge CDC errors. Another contentious point was the arbitrary cut off date imposed by the CDC which did not pick up serious late-stage symptoms. Another was the CDC’s rejection of many positive blood tests performed in its own lab, as well as other lab work showing “motile spirochetes” in nearly 5% of lone star nymphs. Long story short, after numerous revisions, Masters could never sign onto the bastardized study. The CDC had purposely tossed out data and manipulated the results.

The CDC essentially tried blackmailing Masters into signing off on the study before they would let him see the final draft. Refusing the bait, he published a letter of objection in the Journal of Infectious Diseases as well as an article of his own in Missouri Medicine which showed Missouri patients met the CDC surveillance definition for LD and growing evidence that lone star ticks were infected with an unidentified spirochete causing identical symptoms of LD in patients. When the CDC study came out they unbelievably attributed the rashes they labeled STARI to an allergy to tick saliva! In the acknowledgment section of the paper where dozens of folks were thanked, they completely omitted the man who made it all possible – Dr. Ed Masters.

https://madisonarealymesupportgroup.com/2018/01/31/when-als-is-lyme-letter-to-tbi-working-group/  The racketeering scheme to downplay the severity of Lyme disease as identified in the RICO lawsuit should be addressed and documented by the TBD Working Group and not ignored as if this crime does not exist otherwise it will be business as usual at the Centers for Disease Control and we’ll have another thirty years of failure to properly diagnose, treat and control this life-altering infection.

https://madisonarealymesupportgroup.com/2017/12/09/25303/ 10 points – Suing the Architects of Lyme Policy as Task Force Meets to Review it

https://madisonarealymesupportgroup.com/2017/12/02/still-a-pig-with-lipstick-cdc-removes-link-to-idsa-guidelines/  And you’ll notice that for information about “chronic Lyme disease” and long-term treatment, the CDC page kicks you to the National Institutes of Health website. If you follow the link, you’ll find the same-old, same-old tripe about how long-term treatment doesn’t help, etc. (Based on three statistically puny studies of “chronic Lyme” the NIH funded years ago.)  Perhaps the CDC is trying to make its ties to the IDSA less glaringly obvious.

 

https://madisonarealymesupportgroup.com/2017/10/12/the-cdc-needs-a-good-dictionary/  The statement “this disease does not occur nationwide” is inaccurate.  According to CDC surveillance reports, Lyme disease has been reported in every U.S. state except Hawaii, and the black-legged tick that transmits Lyme disease has been found in 45 percent of U.S. counties.

“As a result of their speaking out, from 1997 to 2000, more than 50 physicians in New York, New Jersey, Connecticut, Michigan, Oregon, Rhode Island and Texas were investigated, disciplined or had had their licenses removed. Many of these doctors were reported to their medical boards by the insurance defendants,” the complaint states.
The insurers also allegedly reported doctors who were treating chronic Lyme disease to state medical boards, leading many doctors to refuse to treat Lyme disease patients.”
https://madisonarealymesupportgroup.com/2017/09/07/20268/  LYMErix did not produce antibodies. It is a fungal antigen. It activates latent herpesviruses, which are basically the main drivers of the MS and Lupus outcomes. And OspA-induced tolerance to similar TLR2-agonists causing the ALS and Chronic Fatigue outcomes (mycoplasma bear OspA-like antigens). LYMErix vaccine (and the Tuberculosis vaccines) all failed because they caused immunosuppression, no antibodies, and they made the victims more susceptible to other infections.
https://madisonarealymesupportgroup.com/2017/12/05/bought-documentary-on-pharma-vaccines-gmos/  “The goal of officials at the U.S. Centers for Disease Control and Prevention (CDC) is to achieve a 90 percent health care worker vaccination rate by 2020, and a key strategy for meeting this goal is to tie a health care facility’s employee flu vaccination rate to the facility’s Medicare and Medicaid reimbursements from the federal government.”

Category:

Activism, Lyme, Lyme Vaccine, Testing, Treatment

Finding the Right Psychotherapist for Your Child with Lyme Disease

https://www.lymedisease.org/finding-right-psychotherapist-berenbaum/

Finding the right psychotherapist for your child with Lyme disease

sandy-berenbaum-headshot-238x300

By Sandra K. Berenbaum, LCSW

For some parents and children confronting the challenges of Lyme disease, psychotherapy or family therapy can be a big help. Before seeking a psychotherapist, however, there are a number of things to consider. Different therapists use a wide variety of techniques in their work with clients. Methods that work well for the general client population may not be effective for Lyme patients. Some may actually be counterproductive.

For example, if the therapist doesn’t realize that fatigue in Lyme patients is far beyond merely being tired, she may expect more than the patient is capable of doing. If the therapist doesn’t understand the reason for long-term medical treatment, and a 16-year-old girl complains about being on antibiotics, the therapist might support the teenager’s position, and encourage her to stand up to her parents on the issue. Without appreciating the complexities of tick-borne diseases, a therapist may not understand the many reasons why patients cannot attend school for long periods of time, or go away to college right after high school graduation.

One goal of psychotherapy is to promote improvements in the way a client functions—going to school or work, doing well there, being able to do errands and chores. Yet, for many Lyme patients, no amount of psychotherapy will improve their ability to function. That’s because their functional problems stem from their physical illness, which won’t be fixed without effective medical treatment. A therapist who knows this will understand the need to help the Lyme patient set different goals than could be reachable for a client that does not have Lyme.

There is widespread misunderstanding of Lyme disease in the medical arena. Just reaching a diagnosis of Lyme disease can be a traumatic experience for the child and the whole family. This trauma, on top of that caused by the illness itself, can give rise to issues not present among others seeking therapy, even those with most serious illnesses.

Consider the following scenario, an example of one I commonly see with families in my practice. When their 8-year-old son first starts exhibiting joint pain, headaches or other symptoms, the parents take him to the pediatrician. Not recognizing that he may have Lyme disease, the doctor tries a variety of treatments that do not bring relief. Then he refers them to a rheumatologist or other specialist, who also fails to consider that Lyme disease might be the cause of this boy’s illness. The specialist tries a variety of treatments that don’t help either. The child continues to complain about pain and misses a lot of school because of it. Suspecting that the problem is psychosomatic, the doctors give up exploring underlying medical explanations. They refer the child to a psychiatrist.

The psychiatrist, who also doesn’t know much about Lyme disease, presumes that these symptoms are caused by a mental illness and prescribes psychiatric medication. With undiagnosed Lyme disease, those drugs may have a paradoxical effect or none at all. Then, the psychiatrist becomes convinced that the child is mentally ill. He may even decide it’s severe enough for him to be admitted to a psychiatric hospital. In the hospital, this child with undiagnosed Lyme disease will be “treated,” perhaps with more psychotropic medications, along with individual and group therapy. All of this treatment is focused on the psychiatric illness that the doctors have presumed this child certainly has.

In my experience, many Lyme patients are misdiagnosed with mental illness because doctors fail to uncover the physical origin of their symptoms. The problem is not limited to tick-borne diseases. According to Harvard psychiatrist Barbara Schildkrout, more than 100 physical ailments can manifest symptoms that appear to be mental illness. In her book “Unmasking Psychological Symptoms,” Schildkrout writes:

Many widespread and familiar maladies can masquerade as mental disorders: thyroid disorders, diabetes, Alzheimer’s disease and other dementias, sleep apnea and other sleep disorders, temporal lobe epilepsy, HIV, the long-term consequences of head trauma, Lyme disease, and the side effects of medications, to name only a few. These and other physical conditions are common in patients who are seen by mental health practitioners; these medical conditions are also often the very source of the presenting clinical picture.

Dr. Robert Bransfield is a psychiatrist and noted expert on how Lyme disease affects the brain. He says Lyme-related psychiatric symptoms may start with brain fog and fatigue, progress to anxiety and depression, and eventually lead to major psychiatric disorders such as psychosis and suicide. He characterizes Lyme disease as a brain trauma and notes that it can cause different impairments in different people.

Most research into Lyme and the brain looks at adults, not children. However, in 2001, a study published in the Journal of Neuropsychiatry and Clinical Neurosciences compared children with neurological Lyme disease to healthy control subjects. The researchers found that children with Lyme had significantly more cognitive and psychiatric issues. They concluded, “Lyme disease in children may be accompanied by long-term neuropsychiatric disturbances, resulting in psychosocial and academic impairments.”

Excerpted from “When Your Child Has Lyme Disease: A Parent’s Survival Guide,” by Sandra K. Berenbaum, LCSW, and Dorothy Kupcha Leland. Published by Lyme Literate Press. Berenbaum has a psychotherapy practice that focuses exclusively on Lyme disease patients and their families. She is a member of ILADS and advises a number of Lyme patient advocacy groups. Her website is LymeFamilies.com.

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**Comment**

Fantastic article.  I highly recommend Berenbaum and Leland’s book as it will be a helpful resource for parents who have infected children.  I always thank and encourage family members who attend the support group as in my experience patients who have family support always do better than those are fight alone.  We all need someone in our corner, believing us, encouraging us, studying and learning with us, and sticking up for us.  It validates us when we find ourselves in an unpopular experience that is vilified by the medical community at large.  This alone creates a whole host of issues such as depression and anxiety.  Patients are often abused by the very professionals they seek for help.  It’s a horrible situation.

For more on the psychiatric issues with Lyme/MSIDS/PANS:

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

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/ and https://madisonarealymesupportgroup.com/2017/11/01/lyme-mental-illness-dr-jane-marke/ (both links with great info by Dr. Marke)

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2018/01/05/scary-side-of-childhood-strep/

https://madisonarealymesupportgroup.com/2017/10/09/today-is-panspandas-awareness-day/  “Trifiletti officially diagnosed Carson with PANS, not PANDAS, due to the active co-infections found in his blood work: mycoplasma, the bacteria that causes pneumonia; coxsackie — the virus causing Hand, Foot and Mouth disease; streptococcus, the bacteria causing strep throat; bartonella and babesia — a bacteria and parasite related to Lyme disease; and yeast, Melissa Spears said.  Instead of attacking these infections, Carson’s antibodies were instead going after his brain.”  (Many other links within this article)

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/  “Boy’s Lyme Disease Morphs into Autoimmune encephalopathy. It took 10 years and 20 doctors to find out 12-year-old Patrik had Lyme disease. Just 4 months later the doctors discovered he also has a condition where his immune system attacks his brain. Dr. Souhel Najjar, Cahalan’s doctor, heroically saves the day again.”

 

 

 

Category:

Activism, Lyme, PANS, Psychological Aspects, Treatment