Archive for the ‘Psychological Aspects’ Category

Understanding and Treating Depersonalization and Derealization

https://www.ruschellekhanna.com/blog/2017/8/4/understanding-and-treating-depersonalization-and-derealization

Ruschelle Khanna August 4, 2017

Imagine the feeling of being under water, trapped in a hole, being aware that you are speaking to your loved ones but unable to fully perceive or emotionally connect with them. Imagine living a life where you are fully aware that you used to have emotions but now feel blunted. Combine this with the feeling that you are somehow separate or distant from your experience and/or your own body.

I am a therapist who treats this experience. It’s name: Depersonalization-derealization disorder DPDR. I am also someone who once experienced this due to Lyme disease. I once described it as watching life through a straw. It is one of the more terrifying experiences I have personally ever had in my life.

WHAT DPDR LOOKS LIKE

An individual suffering from depersonalization may experience:

Detachment from emotions
Distorted body image
Difficulty recognizing their own reflection
Loss of sensation in parts of the body
Feeling unreal or like a spectator in their own lives
Sufferers of derealization may experience:

Feeling detached from their surroundings
Feeling that general life events are unreal
Perceiving objects as changing in shape, size or color
Feeling that people they know are strangers
Feeling that environments they know are unfamiliar(1)

WHAT THE RESEARCH SAYS ABOUT DPDR

There isn’t a ton of research exclusively done on DPDR. This is because mental health providers believe it is a symptom of another mental or physical illness such as anxiety or brain injury like epilepsy. There is no single known cause of DPDR, however it is generally understood that periods of severe stress or trauma as well as substance abuse can trigger DPDR.(2)

The National Association of Mental Health (NAMI) states:

Dissociative disorders usually develop as a way of dealing with trauma. Dissociative disorders most often form in children exposed to long-term physical, sexual or emotional abuse. Natural disasters and combat can also cause dissociative disorders.

AVAILABLE TREATMENT OPTIONS

Psychotherapy

The literature tells us that there basically is no known, consistent , effective treatment for DPDR. However, there have been some examples of things that have worked for some people. The best tools therapists have to work with and treat DPDR revolve around the possibility the scenario in which DPDR is brought on by severe anxiety and trauma. In this case, there has been some success with Trauma Focused Cognitive Behavioral Therapy (TF-CBT). This involves taking a look at and slowing down the thoughts, feelings and emotions we are having on a daily basis that could be keeping us in a place of elevated stress.

Another option is assisting those who have chronic DPDR to live with the experience, much like chronic pain. Treatment like this includes mindfulness based interventions including breathing, meditation, journaling, and body oriented therapies such as yoga therapy and creative therapies.

Medications

The literature on effective medications for DPDR is also pretty inconsistent. I am generally not a practitioner that advocates for the use of pharmaceuticals right away, however, if someone has struggled with DPDR, I find that testing medications can be an indication of which direction to go in all aspects of treatment.

A small study conducted on 14 clients showed a reduction in symptoms of DPDR in in 4 patients with the use of Naltrexone.(3) There has also been some evidence that Lamictol as an addition to therapy couldreduce symptoms of DPDR.(4) It may be helpful to find a therapist and psychiatrist who are willing to experiment with some combination of medications and therapies.

Finding answers to complex medical and mental health issues can be very frustrating, overwhelming and leave us feeling defeated. I propose we take a step back, find a way to find relief right now, in the moment, with DPDR or not, then put together a plan to continue searching for answers. I fully understand if this were something I lived with on a daily basis it would probably be impossible to just say I could not recover. I would want answers and I would keep trying. However, just like chronic pain, I would not want to deprive myself of the present moment just because it’s there.

If you are seeking answers to DPDR or other chronic mental pain, please contact a healthcare provider today. Some options:

In need of emergency support: National Suicide Prevention Hotline 1.800.273.8255

A little Relief from DPDR: YouTube Video “Tapping to Reduce Depersonalization” – https://www.youtube.com/watch?v=4ANHr_T7GpA

Ongoing Therapy in NYC or Online Counseling in New York State: My office 347.994.9301

References:

1. Theravive. https://www.theravive.com/therapedia/depersonalization-or-derealization-disorder-dsm–5-300.6(f48.1)

2. Simeon, D. Depersonalisation disorder: a contemporary overview. CNS Drugs. 2004;18(6):343-54. Cited at: https://www.ncbi.nlm.nih.gov/pubmed?term=15089102 Date Accessed: 04/01/2017

3. Simeon D, Knutelska M. An open trial of naltrexone in the treatment of depersonalization disorder. J Clin Psychopharmacol. 2005;25(3):267-70.

4. Sierra M, Baker D, Medford N, et al. Lamotrigine as an add-on treatment for depersonalization disorder: a retrospective study of 32 cases. Clin Neuropharmacol. 2006;29(5):253-8.

**Comment**

I want to encourage any of you out there in Lyme-land that are experiencing this.  In my experience this horrible psychological phenomenon typically goes away with proper treatment for Lyme/MSIDS. Think of it as a passing symptom you will eventually conquer.  (This is true and often possible for nearly every symptom in the book)

I also caution you in regards to psychiatric medications as they often have unintended consequences in people with a pathogen invasion such as Lyme and coinfections.  I’ve known of many patients whose symptoms worsened or they developed new ones after taking these meds.  If they are truly needed – take them!  Many have to take sleep aids, anti-anxiety meds, and meds for depression.  Please, always work closely with a medical professional trained in this area – particularly in regard to Lyme/MSIDS.  

I must also give a plug for support groups at this juncture.  They have been a life-line to many as you can unabashedly share what you are going through and receive true understanding and acceptance.  Sometimes just knowing you are not alone or crazy can do more than any medication!  From the support group can spawn many meaningful relationships that blossom.  Many in my group meet together for coffee and other things as they have found true companionship with folks on a similar journey.

And as always, be kind, gentle, and understanding to the sickie (you!).  Find simple things you enjoy and do them – even if it’s a nap!  Find beauty and dwell on it.  In essence, stop and smell the roses.  The most helpful advice to me came from a patient who had made it to the other side of health when I was at my worst.  He said, “Don’t get depressed about being depressed.”  That may seem strange but many of us struggle with this new darkness that seems to cloud our lives and we feel guilty about it.  Personally, I found this depression went hand in hand with how I felt physically.  The worse I felt physically, the worse I felt emotionally.

You can overcome this.

It will take time, but you can overcome!

For more on psychiatric Lyme & other helps:

For a great article for on-line therapy:  https://www.ruschellekhanna.com/onlinetherapy

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

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

https://madisonarealymesupportgroup.com/2017/07/26/can-lyme-steal-your-mind/

https://madisonarealymesupportgroup.com/2015/09/16/bizarre-symptoms-msids/

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

https://madisonarealymesupportgroup.com/2017/01/11/bug-that-hijacked-my-mind-part-1/

 

FREE: View “Under Our Skin” Best Primer on Lyme Disease

http://www.veoh.com/watch/v21055812yWtmpgB8  Approx. One hour forty five minutes.

If you have not watched the incredible documentary, “Under Our Skin,” please do so.  It reveals what patients and the doctors who dare to treat them go through.  It reveals the controversy up front and personally.  You will learn that Lyme is congenital, very probably a STD, and devastating.

The documentary covers so much ground but unfortunately doesn’t talk about the coinfections that typically come with Lyme (borrelia).

Can Lyme Steal Your Mind?

http://www.amenclinics.com/blog/can-lyme-steal-your-mind/?trk_msg=RV5QQ65CCVI4R57CV8PGKSB054&trk_contact=25HN640GN6IROQPP74BMQNTCPG&trk_sid=S1OO3ABQL8T30RUK21RS5028SG

Can Lyme Steal Your Mind?

can lyme steal your mindAdrianne was normal until the age of 16 when she went on a mountain vacation with her family. When they arrived at the cabin near Yosemite they were surrounded by 6 deer. It was a beautiful moment.

Ten days later Adrianna became agitated and started having auditory hallucinations. Her family brought her to a psychiatrist who diagnosed her as psychotic and prescribed medications, which didn’t help. The next 3 months were a torturous road of different doctors, multiple medications, and a cost near $100,000. Adrianna had become a shadow of her former self.

Desperate, her parents brought her to Amen Clinics for a scan. Her scan showed areas of unusually decreased activity. It caused our physician to look deeper at the potential causes of Adrianna’s symptoms, such as an infection or toxicity. It turned out she had Lyme Disease. After antibiotics, she got her life back.

Lyme Disease is on the Rise

The Lyme disease (LD) infection rate is increasing. It is the most commonly reported tick-borne illness in the United States.

Public health officials report between 30,000 and 36,000 cases of the disease a year. According to the Center for Disease Control, LD is now present in nearly half of U.S. counties in 43 states, a leap of nearly 45% since 1998.

What is Lyme Disease?

According to the CDC, “Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected black legged ticks.” These ticks are mostly found in the Northeast and Mid-Atlantic states, the northern Midwest and the West Coast, and are often found on white-footed mice and white-tailed deer living in woods and high grass areas. Interestingly enough, Lyme disease was named after Lyme, Connecticut in 1975, the town where it was first identified.

Lyme disease can be effectively treated and cured

Doctors faced with treating the disease in early stages can successfully cure it with the use of antibiotics. Unfortunately, LD can be misdiagnosed because some doctors are not familiar with it. For those who feel they may have the disease, it is best to be diagnosed and treated by a Lyme Literate Medical Doctor that may likely to be a member of ILADS, the International Lyme and Associated Disease Society.

Symptoms may start with flu-like feelings such as fever, chills, sweats, possibly muscle aches, fatigue, nausea or joint pain. Physical symptoms often begin with what may look like a bull’s eye rash and in some cases even Bell’s Palsy (facial drooping). An even bigger problem, there may be no indication of a bite at all, which is a reason why Lyme disease may not be suspected. See some of our research on LD, click here.

Lyme disease is hard to detect

The disease has a way of manipulating the brain into thinking you’re not sick, as it slowly starts to work on neurological functions. LD is known as the great imitator because it can mimic various disorders such as Arthritis, Chronic Fatigue Syndrome, Fibromyalgia, ALS, ADHD, and Alzheimer’s disease, just to name a few.

Even in later stages of the illness, LD can be treated. However, some may have symptoms that can linger for months or even years following treatment. In some instances, people experience memory loss, depression, anxiety, trouble focusing, emotional tantrums, or personality changes. Many find themselves suffering, not understanding why they can’t seem to get better until they are finally properly diagnosed and get the treatment needed to become healthy.

How to protect yourself from Lyme disease

Protect yourself, children and pets against LD by avoiding areas where deer tick live, such as wooded bushy areas with long grass. You can also decrease your chances of getting LD by covering up, using insect repellant, clear brush or tick enticing areas, and remove ticks immediately with tweezers. The ticks are most active in May, June, and early July.

Parents may have concerns because children are affected with the disease more often than adults, but neurological symptoms of late-stage Lyme disease are found to be rare in children.

The first step in any healing process is an accurate diagnosis. If you or someone you know may be experiencing symptoms of Lyme disease, call us today at (888) 288-9834 or visit our website to schedule visit and find out more about how we can help.

 **Comment**
I am so thankful that the psychological/psychiatric issues of Lyme/MSIDS are being discussed much more of late.  Unfortunately, many doctors and therefore the public believe that this complex illness is nothing more than a little fatigue and joint pain.  While some may present that way, there are many more that present with neurological, gynecological, cardiac, muscular, vision, psychiatric, GI, and tendon issues (and more I’m forgetting).  Probably the least talked about is the psychiatric aspects – which is probably the reason these patients in the past were told they were delusional and making things up.  The symptoms are so unbelievable that I like to tell folks,
“You don’t get Lyme until you GET Lyme.”
Confession time:  Before I became infected I viewed my husband through a different lens.  My workaholic, type A, responsible, strong husband cried frequently, sat on the couch for hours playing “Candy Crush,” and limped.  He started drinking vodka secretively at night to get to sleep.  He was flushed all the time and slept most of the day and roamed the house like a zombie at night.  His speech was slurred.  He heard voices.  Once, he opened his mouth to speak and complete gibberish came out.  He developed rage and could not handle any sort of stress.
Then I started with symptoms.  My lens shifted as I finally understood as it was happening to me.
If your spouse, loved one, friend, or patient opens up and starts telling you bizarre symptoms, please don’t write them off.  It is my belief that many commit suicide after years of being marginalized.  They aren’t listened to, believed and validated.  They become isolated and deal with anxiety.  Some are so afraid, they take hours to work up the courage to go to the grocery store.
https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/ An in-depth article on psychiatric symptoms.  Dr. Bransfield is an expert in this area.  Dr. Marke has done wonderful work as well.
https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/  Dr. Marke gives a lecture to psychiatrists which I highlight.
https://madisonarealymesupportgroup.com/2017/07/12/suicide-and-chronic-lyme-disease/  A therapist speaks who specializes in helping those with chronic Lyme/MSIDS.

Wisconsin – 117% Increase in Human Version of Mad Cow Disease

In a recent article by Dr. Mercola,  http://articles.mercola.com/sites/articles/archive/2017/07/25/chronic-wasting-disease.aspx?utm_source=dnl&utm_medium=email&utm_content=art3&utm_campaign=20170725Z1_UCM&et_cid=DM152228&et_rid=2092836335,  statistics reveal there is a a 117% increase in Wisconsin and an 85% increase in the U.S. of the human version of mad cow disease, Creutzfeldt-Jakob, which is a contagious neurological disease caused by eating beef contaminated with brain, spinal cord or other central nervous system tissue from infected cattle.

Now the Canadian Government is warning that chronic wasting disease (CWD), a similar disease found in the deer family may jump to humans as well.  Both mad cow disease and chronic wasting disease cause transmissible spongiform encephalopathies (TSE).

The deer family is also known to pick up hitchhiking ticks and carry them long distances.

This warning is due to a study which found CWD was transmitted to three out of five macaque monkeys infected with white tail deer meat.  There is also a systematic literature review showing CWD could also be transmitted to squirrel monkeys.

There is a potential for transmission to humans exposed to deer through diet, health products containing antler velvet, slaughter, velvet harvest, field dressing, preparing trophies and hunting lures.

The state of Wisconsin offers free CWD testing to hunters.

The Milwaukee Journal Sentinel states,

“Wisconsin Department of Natural Resources (DNR)] figures show that tens of thousands of hunters are killing deer in areas where CWD is prevalent and are not submitting them for testing. In 2016, in a CWD-prone area that the DNR describes as the southern farmland zone, 442 deer tested positive for disease out of 3,760 samples. More than 65,000 deer were killed in that zone and were not tested, according to DNR figures.”

Animals infected with CWD shed prions in saliva and urine and remain contagious for life and contaminate land and water.

Similar to Chronic Lyme Disease, CWD does not evoke a detectable immune response or inflammatory reaction. It is different; however, in that it is smaller than most viruses.  It also persists in the environment which is why animals raised in captivity are more likely to infect each other.  Avoid meat from those who force natural herbivores to eat animal parts (routine in concentrated feeding operations).

Researchers have also found an infectious protein (TDP-43) in Alzheimer’s patients is quite similar to prions in mad cow disease and CWD and was found in 200 of 340 autopsied brains of Alzheimer’s patients.  Patients with TDP-43 are 10 times more likely to have been cognitively impaired at death.

A 2005 study published in the journal Medical Hypotheses, stated:

“In the opinion of experts, ample justification exists for considering a similar pathogenesis for Alzheimer’s, Creutzfeldt-Jakob and the other spongiform encephalopathies such as Mad Cow disease. In fact, Creutzfeldt-Jakob and Alzheimer’s often coexist and at this point are thought to differ merely by time-dependent physical changes. A recent study links up to 13 percent of all ‘Alzheimer’s’ victims as really having Creutzfeldt-Jakob disease.”

**Please have your meat tested.  It’s free and it may save your life.**

Suicide and Chronic Lyme Disease

https://www.ruschellekhanna.com/blog/2017/7/10/making-sense-of-suicide-and-chronic-lyme-disease   July 10,2017

When I explain to strangers that I’m a therapist who specializes in Chronic Lyme Disease, most people respond by saying something like “Oh I didn’t know that a therapist can help Lyme. Isn’t that from a tick bite? What can you do for that?” 

For anyone who has suffered years of failed treatments, inability to work, unlived dreams, broken families, lost cognitive function and at times a lost sense of self, it’s pretty easy to understand the need for emotional support.

For everyone else, I generally begin with a shocking statement such as “Many people with Lyme disease have been or are suicidal, some even homicidal or both.” This usually grabs their attention long enough for me to provide some education about the fastest growing infectious disease in the country. It was this all too familiar interaction that persuaded me to write my first blog post explaining some reasons why chronic Lyme disease sufferers might opt for no life over the life they are currently experiencing. Before we dive into those reasons, let’s take a look at suicide.

Life is stressful.  Some of us are naturally more adept at coping with stress than others.  No matter how good we are at managing stress, all of us have a breaking point.  Whether that breaking point comes in the form of chronic long term stress, emotional pain, physical pain or a combination, the brain responds to help us find a way out.  When the mind has run out of options for preservation it turns to suicide as an answer.  Suicide is a symptom that things have become way too much.

There are two types of suicidal thinking. The are called: Passive suicidal ideations (thoughts) and active suicidal ideations. Passive suicidal thoughts do not have a plan of action toward actually harming oneself or others.  They sound like “I wish something bad would happen to me” or “I’d be better off dead.” On the other hand, active suicidal thoughts DO have at least the beginnings of a plan.  They sometimes sound like this: “I could take all the pills in the cabinet” or “I wonder where I could find a way to kill myself.” People often believe that active suicidal ideations are “worse” or more dangerous than passive ones.  However, some research suggests that people with passive suicidal thoughts are just as likely to proceed with attempted suicide as those that have active suicidal thoughts.

Individuals experiencing chronic Lyme disease can have either types of thoughts.  The nature of the illness encourages suicidal thinking for multiple reasons.  Let’s take a look at some below:

Lyme Disease is a brain infection. When Lyme bacteria enter the brain and spinal cord, they cause Lyme encephalitis. The infection causes classic symptoms of encephalitis including mood swings, paranoia, rage, hallucinations, and irrational behaviors including suicidality and homicidality in individuals with no previous history of these symptoms. (Bransfield, 2017)

Lyme Disease causes severe and disabling pain. Ask your neighborhood Lyme disease sufferer what types of pain they have experienced throughout the course of their illness.  The list might look something like this:

  • Shocking Nerve pain
  • Burning pain under the skin
  • Tremors
  • Muscle spasms
  • Excessive Itching
  • Feeling as if something is crawling under the skin
  • Bell’s Palsy (facial paralysis)
  • Severe arthritis
  • Stabbing pain in the eyes
  • Inability to take a full breath
  • Rapid muscle wasting
  • Extreme sensitivity to light, sound and touch

Individuals living with chronic pain have a higher rate of depression and attempted suicide than the general population.  This coupled with possible psychiatric symptoms of a brain infection is often a stress too great to manage for some.

Lyme Disease is Isolating. The nature of any severe and debilitating illness is the way it limits our daily lives.  Lyme is no exception.  In many cases, those impacted are no longer capable of maintaining their roles in the family or community.  Many become isolated to their homes and treatment facilities.  Life can become very small. Isolation is a major contributor to mental wellbeing and can often lead to feelings of worthlessness, helplessness and hopelessness.

If you or someone you love has been impacted by Lyme Disease, it’s reasonable to direct them toward resources to support their mental health and prevent suicide. It is important to remember, suicide is a symptom of feeling there is no other option. There is always another option.  If you need support, please contact National Suicide Prevention Lifeline

Provides help to those in suicidal crisis or emotional distress.

Call 1-800-273-8255

Available 24 hours everyday

For more information:  https://www.ruschellekhanna.com/lyme-chronic-illness/

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

https://madisonarealymesupportgroup.com/2017/03/21/military-veterans-suicide-and-lymemsids/

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

https://madisonarealymesupportgroup.com/2017/04/11/hidden-invaders-infections-can-trigger-immune-attacks-on-kids-brains-provoking-devastating-psychiatric-disorders/

https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/

https://madisonarealymesupportgroup.com/2010/08/30/lyme-on-the-brain-by-tom-grier-part-4-lecture-notes/

Important Example of IV Antibiotics for Lyme/MSIDS

http://www.jewishworldreview.com/0617/dementia_mystery.php3  By Sandra G. Boodman The Washington Post Published June 23, 2017

Richard McGhee and his family believed the worst was behind them.

McGhee, a retired case officer at the Defense Intelligence Agency who lives near Annapolis, Md., had spent six months battling leukemia as part of a clinical trial at MD Anderson Cancer Center in Houston. The experimental chemotherapy regimen he was given had worked spectacularly, driving his blood cancer into a complete remission. But less than nine months after his treatment ended, McGhee abruptly fell apart.

He became moody, confused and delusional – even childish – a jarring contrast with the even-keeled, highly competent person he had been. He developed tremors in his arms, had trouble walking and became incontinent.

“I was really a mess,” he recalled.

Doctors suspected he had developed a rapidly progressive and fatal dementia, possibly a particularly aggressive form of Alzheimer’s disease. If that was the case, his family was told, his life span would be measured in months.

Luckily, the cause of McGhee’s precipitous decline proved to be much more treatable – and prosaic – than doctors initially feared.

“It’s really a pleasure to see somebody get better so rapidly,” said Michael A. Williams, a professor of neurology and neurosurgery at the University of Washington School of Medicine in Seattle. Until recently, Williams was affiliated with Baltimore’s Sinai Hospital, where he treated McGhee in 2010. “This was a diagnosis waiting to be found.”

McGhee isn’t so sure. He wonders what might have happened to him had Williams not ordered a test that proved to be essential in discovering the reason for his dramatic deterioration. 

“It happened really fast,” recalled McGhee’s only child, Melinda, a Defense Department contractor who lives in Northern Virginia. In July 2010, she spent a week at her parents’ house while relatives visited from Arizona.

Soon after their departure, her father’s behavior changed markedly. He began writing odd notes that he affixed to the refrigerator door. When he didn’t like what his wife had made for dinner one night, he left a note on the table that said, “Don’t make this again.”

“We thought maybe he was upset about something” Melinda recalled, adding that she and her mother initially shrugged it off.

McGhee remembers little other than a feeling of overwhelming exhaustion. “I just wanted to sleep all the time,” he said.

Within days, Melinda McGhee said, her father began acting “like a 2-year-old.” He was cranky. He could not remember why he had gone into a room or if he had just eaten. He confused day and night.

“It was scary,” she recalled. “He’d want to drive, and we had to hide the car keys.” She began spending as much time as possible with her parents. Her mother, born in Japan,does not drive or speak English well. So it was their daughter who communicated with doctors, drove her parents to medical appointments and acted as her father’s advocate, trying with her mother to make sense of what was happening.

In late July, braced by his wife and daughter because he was too weak to stand unassisted, McGhee was escorted into the office of his internist.

Alarmed by his condition, the internist – who had seen McGhee the previous month for a sinus infection – sent him straight to a local emergency room.

A CT scan was performed to check for a head injury or a stroke, along with an MRI scan of McGhee’s brain. Based on his symptoms, doctors suspected he might have normal pressure hydrocephalus, an accumulation of cerebrospinal fluid in the brain that causes confusion and movement problems and can mimic dementia.

The internist, who had ordered numerous blood tests, found little of significance. Because hydrocephalus was high on the list of possible diagnoses, McGhee was referred to Williams, who was then director of the hydrocephalus center at Sinai Hospital.

Williams, who saw McGhee in mid-August, noted that his MRI showed atrophy in some areas of the brain suggestive of dementia. Hydrocephalus remained a possibility, but a form of rapidly progressive dementia, particularly Creutzfeldt-Jakob disease, seemed more likely.

Creutzfeldt-Jakob is a rare, devastating neurological disease that typically strikes people between the ages of 60 and 65. About 300 cases are diagnosed annually in the United States. Few victims live longer than a year after the onset of symptoms, which include rapid deterioration in memory, judgment and coordination.

The disease occurs when the normal structure of prion protein, which is found throughout the body, goes awry, destroying brain cells. Scientists do not know why this process occurs, and no treatment has been found to retard the disease. (One variant form of it, popularly known as “mad cow disease,” occurred in England in the 1990s possibly as a result of the consumption of diseased cattle. The classic, dominant form of CJD is not linked to meat.)

“I have seen patients [with Creutzfeldt-Jakob] and it can indeed go that fast,” Williams said of McGhee’s precipitous decline. Other possibilities, he thought, included frontotemporal dementia, a disease that destroys the brain’s frontal and temporal lobes, which govern personality and language, and rapidly progressive Alzheimer’s. Hydrocephalus seemed less likely to Williams: McGhee lacked some of the telltale neurological signs, and the tremors in his arms and legs were not typical of it.

But there was no doubt that McGhee was confused and disoriented. He could not spell any words backward or perform “serial 7s” – counting backward from 100 subtracting by 7 – tasks that are part of a mental status exam and would have been easy for him only weeks earlier. He did not know the date – or even the year.

Concerned that McGhee’s cancer might have recurred, Williams ordered a new round of tests. He also scheduled a spinal tap to check for infection and an EEG to rule out a seizure disorder.

“It’s important to cast a wide net,” Williams said, but not to order tests indiscriminately. “Premature diagnosis is how we often make errors. That’s a reason we consider the differential diagnosis process,” a cornerstone in medicine, in which doctors systematically weigh the possibility of one disease against others based on symptoms and test results.

When Williams saw McGhee a few weeks later, he was worse. McGhee needed a wheelchair and told Williams he thought he was at Travis Air Force Base in California or in Tokyo – places he had been in the past.

“When you see families” in such a situation, Williams noted, “they are scared” witless.

Around the same time, results of the blood tests Williams ordered had come back. Most were unremarkable, except for the Lyme disease screens. McGhee had elevated antibodies to Borrelia burgdorferi, the bacteria that causes Lyme. A Western blot test, which can confirm the diagnosis, was strongly positive.

Whatever else might be wrong, Williams decided, it was clear that McGhee had Lyme disease and would need treatment with IV antibiotics.

McGhee’s spinal tap did yield some positive news: There was no indication of Creutzfeldt-Jakob disease, though there was evidence of an infection or inflammation. That did not rule out another form of dementia or other serious illnesses, including a recurrence of his cancer.

Because Williams was scheduled to be away for two weeks, a colleague temporarily took over McGhee’s case and oversaw three days of inpatient testing.

In the hospital, Melinda McGhee said, doctors told her they were fairly certain that her father’s confusion and other symptoms were the result of dementia.

“It just didn’t make any sense,” she recalled. How, in a matter of weeks, could he go from a man adept at managing his finances to someone who couldn’t find his checkbook?

Doctors, she said, told her that while his deterioration looked sudden, it wasn’t. “They would say things like, ‘Your dad is a really smart guy, and he’s been hiding it from you. It’s been going on for a really long time.’ ”

But more tests revealed little.

Once home, McGhee, who had begun receiving two weeks of IV antibiotics, seemed to be getting better. His confusion began to clear, his short-term memory improved and his tremors abated. “I could feel myself recovering,” he recalled.

On Sept. 29, he went back to see Williams, who was heartened by the improvement.

“He looked 1,000 percent better than when I last saw him,” Williams noted. After reviewing the test results, he concluded that McGhee had been suffering not from dementia but from Lyme meningoencephalitis, a rare bacterial infection of the nervous system that typically occurs several weeks, or even months, after Lyme exposure.

“Spring and summer is when these teeny, tiny ticks come out, and 20 percent of people who are bitten don’t have a bull’s-eye rash,” Williams noted. “And Lyme is on the list of the causes of rapidly progressive dementia,” although it is unusual.

McGhee said he was unaware of any tick bite. He wonders if the disease might have taken hold because his immune system was suppressed by the chemo he underwent to treat his leukemia.

Williams said he doesn’t think so, because McGhee’s treatment had ended months earlier. “He just happened to get two bad things: cancer and Lyme disease,” the neurologist said.

McGhee, now 82, made a full recovery and has had no problems since. He wonders where he might have wound up had Williams not ordered tests for Lyme disease.

“I really worry about other people,” he said. “Would they just be put in some kind of facility and just waste away? I’m just so grateful that everything turned out so well and to Dr. Williams for making the diagnosis.”

Williams said he believes that other doctors would have figured out what was wrong.

McGhee’s case, he said, is gratifying. He was delighted to hear from his former patient after six years and to learn that “he’s alive and kicking and doing quite well.”

“That’s part of the joy of medicine,” he added.

**Comments

  1. Other doctors most probably would NOT have figured out what was wrong.  They are typically Lyme denialists of the worst sort and look for anything and everything but Tick Borne Illness – particularly when there is no EM rash or joint pain.
  2. McGee is right is worrying about other people.  Thousands fall through the cracks and are labeled with everything from MUS (medially unexplained symptoms – which they interpret to mean psychosomatic), depression, Munshen’s, MS, ALS, Lupus, Chronic Fatigue, and many more.  One doctor told her infected son to get a “good haircut.” https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/  Dr. Garrett aptly predicts a pandemic of Lyme dementia.
  3. Despite the doctor’s opinion, suppressing the immune system has been known to trigger a latent Lyme/MSIDS infection. Also, doctors who mistakenly prescribe cortico-steroids for inflammation could worsen the disease(s). http://www.lyme-disease-research-database.com/chronic-lyme-disease.html
  4. This idea that any form of Lyme is “rare” is completely out of touch.  Again, McGee was a lucky one.  Many are not so lucky.
  5. McGee is not alone.  Kris Kristofferson also was diagnosed with dementia and had Lyme Disease:  https://madisonarealymesupportgroup.com/2017/01/04/aluminum-alzheimers-ld/
  6. For more information on the link between Lyme and Dementia/Alzheimer’s:  https://madisonarealymesupportgroup.com/2016/04/10/bugs-causing-alzheimers/ Two Astounding Quotes from the documentary “Under Our Skin”: “I extracted DNA from 10 Alzheimer brains that came from the Harvard University brain bank. Using molecular methods I was able to find the DNA of the Spirochete which causes Lyme disease in 7 out of 10 of the Alzheimer specimens that I received from Harvard.” – Dr. Alan B. MacDonald and “We never had, in the last 5 years, a single Alzheimer Disease, Lou Gehrig’s Disease / ALS, Parkinson’s Disease, Multiple Sclerosis / MS patient who did not test positive for Borrelia Burgdorferi (Lyme Disease bacteria), not a single one.“ – Dr. Dietrich Klinghardt

Iowan, Jack Gordon, is a case discovery of 2 diseases NEVER found together before on 11.22.2015: Lewy Body Dementia, causing violent hallucinations, and Lyme Disease/MSIDS. Using his medical files, he was bitten by a tick 35 yrs. ago, but the doctors never acknowledged it by diagnosing or treating him.
You may recognize Lewy Body Dementia as what Robin Williams’ autopsy revealed. https://madisonarealymesupportgroup.wordpress.com/2016/03/28/did-robin-williams-have-lyme/

https://jneuroinflammation.biomedcentral.com/articles/10.1186/1742-2094-8-90

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551238/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4399390/

https://www.scientificamerican.com/article/controversial-new-push-to-tie-microbes-to-alzheimer-s-disease/

 

 

Suicide, Lyme, and Associated Diseases

https://www.dovepress.com/suicide-and-lyme-and-associated-diseases-peer-reviewed-article-NDT   Published 16 June 2017 Volume 2017:13 Pages 1575—1587
Authors Bransfield RC

 Video abstract of original research paper

Purpose: The aim of this paper is to investigate the association between suicide and Lyme and associated diseases (LAD). No journal article has previously performed a comprehensive assessment of this subject.

Introduction: Multiple case reports and other references demonstrate a causal association between suicidal risk and LAD. Suicide risk is greater in outdoor workers and veterans, both with greater LAD exposure. Multiple studies demonstrate many infections and the associated proinflammatory cytokines, inflammatory-mediated metabolic changes, and quinolinic acid and glutamate changes alter neural circuits which increase suicidality. A similar pathophysiology occurs in LAD.

Method: A retrospective chart review and epidemiological calculations were performed.

Results: LAD contributed to suicidality, and sometimes homicidality, in individuals who were not suicidal before infection. A higher level of risk to self and others is associated with multiple symptoms developing after acquiring LAD, in particular, explosive anger, intrusive images, sudden mood swings, paranoia, dissociative episodes, hallucinations, disinhibition, panic disorder, rapid cycling bipolar, depersonalization, social anxiety disorder, substance abuse, hypervigilance, generalized anxiety disorder, genital–urinary symptoms, chronic pain, anhedonia, depression, low frustration tolerance, and posttraumatic stress disorder.

Negative attitudes about LAD from family, friends, doctors, and the health care system may also contribute to suicide risk. By indirect calculations, it is estimated there are possibly over 1,200 LAD suicides in the US per year.

Conclusion: Suicidality seen in LAD contributes to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms which are possibly intensified by negative attitudes about LAD from others. Some LAD suicides are associated with being overwhelmed by multiple debilitating symptoms, and others are impulsive, bizarre, and unpredictable. Greater understanding and a direct method of acquiring LAD suicide statistics is needed. It is suggested that medical examiners, the Centers for Disease Control and Prevention, and other epidemiological organizations proactively evaluate the association between LAD and suicide.

For more on psychiatric Lyme & TBI’s:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/2017/01/17/lymemsids-and-psychiatric-illness/

https://madisonarealymesupportgroup.com/2017/04/11/hidden-invaders-infections-can-trigger-immune-attacks-on-kids-brains-provoking-devastating-psychiatric-disorders/