Archive for the ‘Psychological Aspects’ Category

“Gaslighting” By Some Doctors Can Undermine the Chronically Ill

https://www.lymedisease.org/gaslighting-undermine-patients/

“Gaslighting” by some doctors can undermine the chronically ill

Carolyn Dedgnan, LymeDisease.org

By Carolyn Degnan

One of the biggest problems that chronically ill patients face is “gaslighting” from their physicians/practitioners. I’ve been familiar with that term when talking about a personal relationship.

However, I had never heard it applied to a doctor/patient relationship until I heard it used during the LymeMind 2020 conference. I was struck by how appropriate the term is to describe an abusive practitioner relationship.

What is gaslighting?

Gaslighting is a form of emotional abuse that causes someone to question their memory, perception, and sanity. (The expression originated from a play–then movie–called “Gaslight.” The word is now commonly used in the field of clinical psychology.)

Gaslighting in a personal relationship is usually when the abuser is a narcissist. The abuser denies, lies, minimizes, and undermines whatever it takes to plant seeds of doubt and confusion in the victim of his abuse.

When a physician practices gaslighting, the physician makes the patient feel like he/she is imagining their symptoms and then they tell the patient that he/she is depressed and needs anti-depression drugs.

Gaslighting happens to many patients, but it is most likely to happen to females with such conditions as chronic pain, sickle cell anemia, chronic fatigue syndrome, and chronic Lyme disease.

The reality is that the patient is NOT crazy and not all physicians gaslight–but the physician who does gaslight either:

1) doesn’t know how to treat the patient’s symptoms/disease or
2) has been taught by a national medical society to discourage and not treat this “type” of patient.

The only way for a patient to “win” is to walk away from that physician—but that also leaves the patient once again without any treatment and sometimes any hope of getting better. It may be hard for the patient to find another practitioner to work with them, because now the patient has been labelled as “difficult.”

Prevention

How do we help prevent gaslighting for the patient population?

  • Physician education about the disease is key
  • By empowering patients to know their rights to walk away from toxic physician relationships
  • Encourage support groups for every disease
  • Most importantly, promote physicians who are caring and do not gaslight their patients.

LymeDisease.org strives to provide names of qualified Lyme-literate practitioners through our Physician Directory. Many of them are members of ILADS (International Lyme and Associated Disease Society). Others are listed at the recommendation of a patient based on their experience with the practitioner or are listed at the behest of the practitioner.

Information garnered from MyLymeData, our patient-driven research study, shows that most Lyme patients who have improved substantially have been treated by a Lyme-literate practitioner.

Having a Lyme-literate doctor doesn’t guarantee that the patient won’t be gaslighted. But you have a much better chance of having a positive experience if the practitioner is educated on the disease.

Carolyn Degnan is Chief Operating Officer of LymeDisease.org. She recently blogged about “What I Learned From Having COVID-19.” She can be reached at cdegnan@lymedisease.org.

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For more:  https://madisonarealymesupportgroup.com/2017/01/11/sick-shaming-of-lymemsids-patients/

https://madisonarealymesupportgroup.com/2019/02/16/lyme-is-all-in-your-head-a-wake-up-call-to-mental-health-professionals/

https://madisonarealymesupportgroup.com/2018/06/04/ld-diagnosis-took-forever-because-of-mental-health-stigma/

https://madisonarealymesupportgroup.com/2019/11/29/its-all-in-your-head-medicines-silent-epidemic/

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

https://madisonarealymesupportgroup.com/2019/11/22/differentiating-psychosomatic-somatopsychic-multisystem-illnesses-and-medical-uncertainty/

Category:

Lyme, Psychological Aspects

A Case of Borrelia Miyamotoi

https://www.nejm.org/doi/full/10.1056/NEJMcpc2004996?

Case 32-2020: A 63-Year-Old Man with Confusion, Fatigue, and Garbled Speech

Authors:  Shibani S. Mukerji, M.D., Ph.D., Kevin L. Ard, M.D., Pamela W. Schaefer, M.D., and John A. Branda, M.D.

The following was obtained from the case presented in the link above in the New England Journal of Medicine.A 63-year-old retired government employee who lived with his wife in northern New England had recently traveled to Florida and to rural Canada to hunt was evaluated at the hospital because of:

  • fever
  • confusion
  • headache
  • garbled speech
  • fatigue
  • vision changes & floaters
  • lymphocytic pleocytosis
  • elevated protein level in the cerebrospinal fluid (CSF)
  • worsening proteinuria and hypertension
  • flash of light accompanied by transient sharp pain in the left retro-orbital area and forehead, with monocular blurry vision
  • garbled and nonsensical speech with impaired comprehension
  • word-finding difficulty
  • photophobia
  • sonophobia
  • staring spells that lasted for 1 minute
  • low-grade fever 
  • somnolence
  • generalized weakness
  • unsteadiness
  • mild neck stiffness
  • unintentional weight loss of 10 kg in the past 6 months
  • nocturia
  • cachectic appearing
  • perseverative thoughts
  • unable to name days of the week backward
  • when asked to remember three words, he could recall only one word after 5 minutes
  • he reported that nine quarters equaled $4.25
  • dilated-eye examination revealed edema in both optic nerves

Interestingly, after IV acyclovir, ceftriaxone, ampicillin, vancomycin, and thiamine, he developed myoclonic jerks with marked lethargy, and the photophobia, and nonsensical speech persisted. He was intermittently impulsive and uncooperative. After 4 days of IV treatment he reported feeling better and having increased strength, allowing him to walk. On the fifth hospital day, he was calm and cooperative; oriented to person, place, and time; and able to follow complex commands.

Administration of broad-spectrum antimicrobial agents resulted in rapid improvement in his clinical condition within days despite increasing neurologic symptoms over the course of several months, findings that suggested meningoencephalitis.  Despite an extensive evaluation for likely causes of meningoencephalitis, a definitive diagnosis was not established. This patient’s presentation and clinical course are emblematic of challenges faced by clinicians, given that the causative agent in meningoencephalitis is identified in only 30 to 60% of cases, despite extensive and invasive testing.1,2

There are three important clinical features of this patient’s presentation:

  • uveitis associated with meningoencephalitis
  • subacute cognitive decline
  • clinical improvement after the administration of antimicrobial therapy

A unique feature of this patient’s presentation is his exposure to rituximab, a humanized chimeric anti-CD20 monoclonal antibody that causes B-cell depletion. The effects of rituximab should be considered when interpreting the results of IgG and IgM serologic tests. This concern is relevant to testing for West Nile virus infection and eastern equine encephalitis, both of which can cause neuroinvasive viral encephalitis and are endemic in the northeastern United States. The antibody response during these infections can be delayed or absent in patients with B-cell depletion.4,5 Such a response may also occur in Powassan virus infection, an emerging cause of viral meningoencephalitis in the United States that is transmitted by ticks.6

A key question remains: What pathogen can cause uveitis and meningoencephalitis and result in rapid clinical improvement after the administration of vancomycin, ampicillin, ceftriaxone, and acyclovir?

The authors point out that spirochete infections can cause uveitis and meningoencephalitis.

Due to the patient’s history of living in an endemic area for tick-borne diseases, is an avid hunter, whose condition improved dramatically after IV antibiotics, infection with borrelia species seemed a logical diagnosis.

The authors point out the problem with testing:

Testing for Lyme disease occurs as a part of a two-tiered algorithm and measures a person’s antibody response to the spirochete. Whether treatment with rituximab delays formation of antibodies in blood and CSF is unknown, thus complicating the interpretation of this patient’s serologic test results.

They further state that those with neurological Lyme infection often have abnormal imaging findings of the head or spine but that this patient had neither.

Then they state that B. miyamotoi, another borrelia species, causes a symptom complex that is consistent with this patient and that there are two case reports of meningoencephalitis in immunocompromised patients receiving rituximab, where B. miyamotoi was the causative agent.  These patients received rituximab for hematologic cancers, and in both, Wright-Giemsa staining of CSF showed spirochetes, and a definitive diagnosis of B. miyamotoi infection was made based on nucleic acid testing of the blood.

The authors state the patient’s recurrent fever but lack of rash also support a B. miyamotoi infection, but that the opthalmologic findings do not.  They admit; however, that there is limited understanding of B. miyamotoi but since other spirochetes can cause eye issues, B. miyamotoi is likely no different. ( I must add here that I know many Lyme disease patients who get recurrent fevers and have never seen a rash.  This is a perfect example of how researchers and doctors have falsely pigeon-holed Lyme symptoms into a box of their own making).  For more:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Regarding testing, a lumbar puncture targeting the glpQ gene of borrelia that causes relapsing fever, which is absent in Lyme disease, was positive. Serum showed strong reactivity on the ELISA that detects IgG antibodies directed against the GlpQ protein of B. miyamotoi.  Corresponding IgM ELISA was negative, consistent of B. miyamotoi infection of several months duration.

Unfortunately there are no randomized controlled trials and no formal treatment recommendations.  Patients typically receive Lyme disease treatment.  An in vitro study showed B. miyamotoi was susceptible to doxycycline, azithromycin, and ceftriaxone but not amoxicillin. (Again, I must add that current Lyme disease treatment advocated by the CDC/IDSA only works for a small percentage of patients and that studies from the beginning have shown treatment failures using their approach.  For more:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/)

The patient was sent home with 4 weeks of IV ceftriaxone but developed a facial rash and was switched to doxycycline.  After 3 weeks all symptoms had resolved but the blurry vision which improved slowly over 3 months.

This patient should be followed up for years, but won’t be.
And the question begging to be asked is: how many people with B. miyamotoi are falling through the cracks?  It isn’t even reportable to the CDC yet (which notoriously undercounts all things tick-borne-related).

For more:  https://igenex.com/tick-talk/what-you-need-to-know-about-borrelia-miyamotoi/

This article points out the confusion with B. miyamotoi: 

  • many separate it from other tick-borne relapsing fevers
  • while it can cause relapsing fevers, it sometimes doesn’t
  • it appears to be the only TBRF transmitted from a hard bodied tick, unlike TBRF which is mainly transmitted from a soft bodied tick (I remain skeptical of this as ticks have repeatedly been found to transmit things they shouldn’t – just like they are found in places they shouldn’t be.)
  • symptoms often resemble Lyme disease
  • you can be infected with BOTH B. miyamotoi AND Lyme disease (as well as numerous other coinfections) which will complicate symptom presentation
  • testing for B. miyamotoi is just as abysmal as it is for Lyme/MSIDS:  https://madisonarealymesupportgroup.com/2020/03/01/study-cdcs-2-tier-lyme-testing-inaccurate-in-more-than-70-of-cases/

Category:

Psychological Aspects, research, Tickborne Relapsing Fever, Treatment

The Link Between My Lyme Disease and Mental Health

https://themighty.com/2020/10/lyme-disease-treatment-and-mental-health-link/

The Link Between My Lyme Disease and Mental Health

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Credit: Slide from Dr. Jane Marks’s lecture to American Psychiatric Association NY Branch, Lenox Hill Hospital, November 12, 2016

By Maddie Pinckney

Roughly 11 years ago, I walked out of my room and turned off the light switch. Instead of walking down the stairs, I turned back around and touched every pillow on my bed five times. This happened every day for the next few months. Touching objects repeatedly is a recognizable trait of obsessive-compulsive disorder (OCD), and so naturally, after being taken to the doctor, I was diagnosed with OCD. Doctors encouraged therapy, and they believed it would adequately manage the condition. And it did. That is, until it reappeared in other forms.  (Go to link for article)

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**Comment**

This patient speaks of mental fatigue, depression, OCD, and stabbing pain, common symptoms of Lyme/MSIDS.

The really good news is after only 1 month of Lyme treatment, 80% of her psychiatric symptoms were gone.  GONE.

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

Please see this excellent presentation by Dr. Jane Marke:

http://

(If you are only interested in psychiatric symptoms, scroll to around minute 28)

12/11/2016

Dr. Jane Marke:  Mental Illness or Lyme Disease?

Lecture to American Psychiatric Association NY Branch, Lenox Hill Hospital, November 12, 2016

Lyme (Borreliosis) has become a very common illness; every state in the country has areas infested with ticks. Patients dealing with Lyme suffer neuro-psychiatric complications that are related directly to the illness, as well as to the emotional challenges and lack of support which often accompanies this difficult illness.

Many doctors are convinced that after a short course of antibiotics patients should be well. The huge number of people still ill years after a course of antibiotics belie this assertion.

Patients with Lyme, and related tick-borne disease, can have symptoms which mimic every known psychiatric syndrome. Treatment aimed directly at symptoms can relieve suffering rather quickly.

These symptoms include, but are not limited to:

  • insomnia
  • anxiety
  • “brain fog”
  • obsessive-compulsive symptoms
  • depersonalization
  • depression
  • rages

But antibiotics are needed to undermine the root cause of the illness: the bacteria that causes Lyme: Borrelia burgdorferi. Lyme is so common, that at this point in time, a large percentage of my patients have the illness. Almost everybody knows someone with this illness. It’s something we always have to keep in mind.

If you have Lyme, you deserve excellent treatment, no matter how briefly or how long you have been ill.

You deserve a Lyme-literate physician.

Visit Jane Marke here: http://www.janemarkemd.com/

Read also:

See more video’s and information about Lyme Disease here on Lyme Channel: http://bit.ly/2qLgv9g and here on Facebook: http://bit.ly/2rBchR0

Lyme disease is one of the fastest spreading infectious diseases in the world.
Lyme disease is almost twice as common as breast cancer and six times more common than HIV/AIDS!

Category:

Activism, Lyme, Psychological Aspects

Signs and Symptoms of Lyme Disease

https://danielcameronmd.com/signs-and-symptoms-of-lyme-disease/

signs and symptoms of lyme disease

The broad range of signs and symptoms of Lyme disease and the varying presentations from person to person make diagnosing the disease challenging. Furthermore, Borrelia burgdorferi spirochete are adept at evading the immune system. The bacterium can travel through the bloodstream, burrow into tissue and remain dormant for days, months, or even years before symptoms arise.

By

While many people associate Lyme disease with manifestations such as Bell’s palsy, the circular Bull’s-eye rash, and flu-like symptoms, Lyme disease can also cause sensory, cognitive, neurologic, and cardiac complications, even in its earliest stage. But, the signs and symptoms of Lyme disease are all too frequently attributed to another medical condition.

Objective signs of Lyme disease include Bell’s palsy, synovitis of the knee, and the presence of a Bull’s-eye or erythema migrans rash. However, most people exhibit a wide range of signs and symptoms of Lyme disease that may come and go and fluctuate in their intensity.

Initially, Bell’s palsy, also known as idiopathic facial nerve palsy, may not be attributed to Lyme disease. But making the connection early is important, since corticosteroids, a common treatment for facial nerve palsy, can be harmful to patients with Lyme disease.

Furthermore, researchers in the UK remind clinicians to consider Lyme disease in children who present with Bell’s palsy. “In areas endemic with Lyme disease, Lyme disease should be considered as the likely cause of facial nerve palsy in children until proven otherwise.”

Wide range of signs and symptoms of Lyme disease

Studies indicate that at least 50% of patients with Lyme disease do not exhibit the classic Bull’s-eye rash. When a rash is present, it can appear anywhere on the body. It does not always appear at the site of the tick bite. The rash usually appears between 3 – 30 days after the tick bite.

A rash due to Lyme disease is typically not itchy or painful. It may fade and then reappear and it can be confused with a spider bite. Atypical rashes can also occur. And when multiple rashes appear on the body, it may be an indication that the Borrelia burgdorferi spirochete has disseminated beyond the tick bite and the disease is in a more advanced stage.

If left untreated, the infection can spread to other parts of the body, including the brain and central nervous system, cardiovascular system, peripheral and autonomic nervous system, along with the muscles and joints, and eyes.

Neurologic and cardiac manifestations

Lyme disease can cause neurological and cardiac symptoms such as meningitis, encephalitis, and carditis. But, more often symptoms include severe and unrelenting fatigue, joint pain (with or without swelling), sore muscles, neck and back pain, headaches, light, sound and temperature sensitivity, sleep disturbance, night sweats, irritability, anxiety, despair, sadness, lightheadedness, crying, poor memory and concentration, stiff neck, numbness, and tingling sensations.

Although rare, Lyme carditis can cause sudden death. The authors of a case series warn, “These two cases highlight the importance of early recognition. And treatment, even if it’s empirical, may save lives.”

Another researcher reports, “The burden of Lyme disease and Lyme carditis in U.S. children’s hospitals has increased in recent years.” The authors identified 189 children diagnosed with Lyme carditis between 2007 and 2013.

Signs and Symptoms of Lyme Disease

Lyme-induced encephalopathy

Lyme disease can trigger encephalopathy in some patients, as well. A Tufts University School of Medicine study reports that 24 of 27 Lyme disease patients presented with a mild encephalopathy, which began 1 month to 14 years after the onset of the disease and was characterized by memory loss, mood changes, and sleep disturbances.

Fallon et al. described pain reported by patients with Lyme encephalopathy as being “similar to those of post-surgery patients,” and their fatigue “was similar to that of patients with multiple sclerosis.”

And another study found that 14% of 86 children with Lyme disease exhibited neurocognitive complications including behavioral changes, forgetfulness, declining school performance, headache or fatigue, and in 2 cases, a partial complex seizures disorder.

Long-term complications

Signs and symptoms of Lyme disease may be incorrectly attributed to another illness. Patients are often misdiagnosed with a psychiatric disorder, chronic fatigue syndrome, or fibromyalgia. An incorrect diagnosis and delay in treatment can lead to long-term consequences for Lyme disease patients.

Between 34% and 62% of patients have symptoms that persist long term despite treatment. Another study found that at their six-month follow-up visit, “36% of patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties.”

Postural orthostatic tachycardia syndrome (POTS) is an autonomic dysfunction that can appear years after antibiotic treatment for Lyme disease, resulting in fatigue, cognitive impairment, and orthostatic intolerance such as palpitations, lightheadedness, chest discomfort, and shortness of breath, among others.

Other types of chronic manifestations include Lyme encephalopathy, neurocognitive complications, post-Lyme disease syndrome, neuropsychiatric Lyme disease, sensory neuropathy, and carditis.

Psychiatric symptoms common in Lyme patients

An estimated 1 in 3 patients with chronic neurologic Lyme disease suffer from depression, in addition to fatigue, headaches, poor concentration, lightheadedness, and joint pain, according to one study.

Dr. Robert Bransfield, a New Jersey-based psychiatrist, who specializes in treating tick-borne disease infections, has found that in his practice depression is the most common psychiatric illness associated with late-stage Lyme disease.

All too frequently patients with complex, multisystem illnesses are dismissed by clinicians, their symptoms often attributed to a psychiatric illness simply as “a diagnosis of default,” Bransfield writes.

This attitude can lead to tragic delays in identifying a correct diagnosis and appropriate treatment.
Related Articles:

Case report: 46-year-old Canadian man with Bell’s palsy

Have you been bitten by a partially fed tick?

Broad range of presentations for Lyme carditis cases

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For more:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

https://madisonarealymesupportgroup.com/2020/09/07/summer-flu-symptoms-could-it-be-lyme-disease-or-covid/

https://madisonarealymesupportgroup.com/2020/09/06/helping-our-child-through-lyme-disease-shouldnt-be-this-hard/?

https://madisonarealymesupportgroup.com/2020/09/14/can-lyme-disease-impact-pregnancy-outcome/

https://madisonarealymesupportgroup.com/2020/03/09/the-long-term-persistence-of-borrelia-burgdorferi-antigens-dna-in-the-tissues-of-lyme-disease-patient/

https://madisonarealymesupportgroup.com/2017/05/10/body-of-research-showing-borrelia-persists/

https://madisonarealymesupportgroup.com/2019/05/11/lyme-found-in-genital-lesion-sexual-transmission-studies-screaming-to-be-done/

https://madisonarealymesupportgroup.com/2020/06/12/formidable-evidence-for-sexual-transmission-of-lyme-disease-first-study-to-document-aca-rashes-in-canadian-patients/

https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

 

Category:

Heart Issues, Lyme, Psychological Aspects, research

LymeMIND Replay

https://www.lymedisease.org/lymemind-fb-replay/  See video here

Watch Facebook replay of Oct. 10 LymeMIND conference

LymeMIND2020

If you missed LymeMIND 2020, an online conference featuring many top speakers, you’re in luck. The organization has made the four-hour video available for reviewing via Facebook. (You don’t have to be a member of Facebook to access it. Just click on the link below.)

It was an impressive line up of speakers.

Co-authors Dr. Steven Phillips and Dana Parish delivered a keynote address, discussing their upcoming book Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again.

A panel with Richard Horowitz, MD, John Aucott, MD, Andrew Petersen, DO and Tania Dempsey, MD, discussed “Novel treatments–Making Sense of Treatment Options.”

Other segments dealt with gestational Lyme disease, Bartonella, co-infections, COVID-19, the Lyme Biobank, and Lyme disease legislation.

There was also a special announcement at the end of conference: the LymeX Innovation Accelerator.

Click here to access the Facebook Live video replay. (Fast forward about 9 minutes in to get to the first speaker.)

https://www.facebook.com/watch/?v=1779101768915283

Category:

Lyme, Psychological Aspects