Archive for the ‘Psychological Aspects’ Category

Am I Losing My Mind, Or Is It Lyme Disease?

https://www.amenclinics.com/blog/am-i-losing-my-mind-or-is-it-lyme-disease/

Am I Losing My Mind, Or Is It Lyme Disease?

AM I LOSING MY MIND, OR IS IT LYME DISEASE?

Do you feel like you’ve got brain fog? Are you having trouble with problem-solving and decision-making? Is it getting harder for you to concentrate or pay attention? Are you struggling with memory problems? If so, you could be feeling like you’re losing your mind.

If you’re like most people, you might head to your primary care physician to complain about these issues. In some cases, you might be told it’s just part of the normal aging process, you might leave with a prescription for ADD/ADHD medication, you might get a recommendation to visit a psychiatrist, or you might be told you have Alzheimer’s disease. It’s highly unlikely, however, that you will be tested for Lyme disease.

That’s what happened to actor and singer-songwriter Kris Kristofferson. For years, he was told he was suffering from Alzheimer’s disease or some other form of dementia. His memory continued to deteriorate, and he was taking numerous medications. Eventually, the Hall of Fame singer went to Dr. Mark Filidei, an integrative medicine doctor who diagnosed Kristofferson with Lyme disease and treated him with antibiotics and hyperbaric oxygen therapy. After a few treatments, the singer reportedly told his wife, “I feel like I’m back,” and has done much better.

What is Lyme Disease?

Lyme disease (Borrelia burgdorferi) is a bacterial infection that is caused when a person gets bitten by an infected black-legged tick, or deer tick as it is commonly known. However, many people with Lyme disease don’t recall being bitten by a tick and who did not get the typical “bull’s-eye” rash that is considered a telltale sign of the infection. When left untreated, the infection can cause devastating, life-changing issues.

Psychiatric Symptoms of Lyme Disease

All of the neuropsychiatric issues mentioned above are considered symptoms of Lyme disease. In fact, 70% of people with Lyme disease say they experience negative changes in memory and mental sharpness. In some people, Lyme disease can also cause paranoia, mania, obsessive compulsive tendencies, anxiety, depression, and hallucinations. But many healthcare professionals are unaware of the debilitating psychiatric effects of the disease. For this reason, many people are treated with medications that don’t help, and in many cases, produce harmful side effects that make things worse.

How is Lyme Disease Diagnosed?

Lyme disease is notoriously difficult to diagnose. When laboratory testing for the infectious disease is performed by mainstream labs using the standard “Western blot” test, it can often give a false-negative result. If your results are negative, you could still have Lyme disease. It’s important for testing to be done at specialty labs that are better trained to detect the disease.

Because lab testing is not always definitive, Lyme disease is typically diagnosed by a “Lyme Literate Medical Doctor” (LLMD) who is a member of the International Lyme and Associated Diseases Society (ILADS). These trained healthcare professionals generally take a detailed clinical history, perform a thorough physical exam, and do appropriate laboratory testing.

Brain imaging studies using SPECT can also help. Brain scans of people with infections like Lyme disease tend to show low overall blood flow and have a toxic appearance. When a brain looks toxic, it prompts a psychiatrist or other medical professional to dive deeper into what the root cause may be. It increases the chances of Lyme disease being investigated.

Hope for Lyme Disease

Just as singer Kristofferson saw an improvement in his symptoms when properly diagnosed and treated for Lyme disease, there is hope for other sufferers. With an accurate diagnosis and a personalized treatment plan, people can experience a reduction in symptoms and a greater quality of life.

At Amen Clinics, we have seen hundreds of patients with resistant complex psychiatric symptoms or cognitive problems who tested positive for Lyme disease and got significantly better when it was treated. Dr. Mark Filidei, who diagnosed Kris Kristofferson with Lyme disease, is the director of integrative medicine at Amen Clinics, where we commonly use specialty labs to help diagnose Lyme disease.

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For more: https://madisonarealymesupportgroup.com/2017/01/04/aluminum-alzheimers-ld/ Within this link you can watch a brief video of Kris Kristofferson, initially diagnosed with Alzheimers but was found to be infected with Lyme disease.

https://madisonarealymesupportgroup.com/2019/08/11/the-unfortunate-connections-between-lyme-disease-mental-illness/

https://madisonarealymesupportgroup.com/2019/05/30/why-lyme-disease-is-causing-a-mental-health-crisis/

https://madisonarealymesupportgroup.com/2019/05/27/uk-woman-isolated-pumped-full-of-anti-psychotics-told-its-all-in-her-head-until-finally-diagnosed-with-lyme/

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/

The Unfortunate Connections Between Lyme Disease & Mental Illness

https://pro.psychcentral.com/exhausted-woman/2019/07/the-unfortunate-connection-between-lyme-disease-and-mental-illness/

The Unfortunate Connection Between Lyme Disease and Mental Illness

Carol has been a patient of mine for over five years. We have walked through some of the most difficult times in her life as she dealt with her failing marriage and then divorce, a move, significant career changes, undiagnosed medical issues, and co-parenting teenagers.

Yet during our discussions, there was an undercurrent of, “I don’t feel right.” Her feelings were understandable given her life circumstances. But when life settled down, her complaints of pain, stress, fogginess, anxiety, and depression intensified. One medical doctor after the other ran tests with no conclusive diagnosis so she was labeled psychosomatic.

But that didn’t make sense given that fact that she was consistent in therapy, did what was asked, and had significant improvements in several areas of her life. Something else seemed to be wrong. Finally, she found a doctor who tested her for Lyme disease, and she was properly diagnosed.

What is Lyme Disease? Lyme disease is an infectious disease caused by a bacteria and spread by ticks resulting in a suppression of the immune system. It can develop into a chronic multisystemic illness affecting the nervous system causing neurologic and psychiatric symptoms. These symptoms can mimic paranoia, dementia, schizophrenia, bipolar, panic attacks, depression, eating disorders, and obsessive-compulsive behaviors.

This explained everything. It was as if all the random pieces of a puzzle were put together for Carol. The problem is that the diagnosis doesn’t solve the problem, it only identifies it. Counselors and therapists need to differentiate between atypical psychiatric disorders and those associated with having Lyme disease in order to properly treat their clients. Here are some other misconceptions about Lyme disease and mental illness.

  1. Often called psychosomatic. When a patient is improperly diagnosed or not diagnosed at all, some physicians deem their condition to be psychosomatic. This is a mischaracterization of psychosomatic disorders. Lyme pain is real, not imagined. Often, patients lose their health, livelihoods, relationship, home, and dignity in the process of getting diagnosed. This is not due to an improper coping mechanism or a cognitive manifestation of emotional stress. Never tell a Lyme patient that what they feel is not real.
  2. Neuropsychiatric symptoms are prominent. Lyme patients tend to have trouble with mood regulation, cognition, energy, sensory processing, and/or sleep. This can manifest into paranoia, hallucinations, mania, and/or obsessive-compulsive behaviors. Memory loss and concentration issues mirror other psychological disorders. This might make a patient look like they are in the early stages of dementia, have attention-deficit, or a traumatic brain injury. Sensory processing issues such as sensitivity to lights and sounds are also typical. This results in avoiding daylight, staying at home, avoiding crowned areas such as stores, parks, or restaurants.
  3. Often misdiagnosed. Lyme disease looks like other neurological conditions and sometimes is misdiagnosed as chronic fatigue or fibromyalgia. Patients experience extreme fatigue despite sleeping for 10-12 hours a night and/or napping. When they push through one day, they may need 2-3 days of taking it easy to fully recover. The misdiagnosis is frustrating for the patients because it slows down proper treatment.
  4. Lyme can resemble Alzheimer’s. Unfortunately, Lyme disease looks like the early phases of Alzheimer’s with rage, short-term memory loss, personality changes, a slower speed of thinking, difficulty remembering words or names, and impaired fine motor control such as buttoning a shirt. This misdiagnosis has devastating consequences as often Alzheimer’s patients are placed in assisted living or locked nursing homes.
  5. Anxiety and panic attacks are side effects. Having been told by doctors that what they are feeling is a figment of their imagination, Lyme patients naturally develop anxious thoughts. In addition, some of the medical treatments for Lyme can have a side effect of increased anxiety. Left unchecked, this manifests into panic attacks. Further left alone, turns into paranoid thoughts, actions, and phobias. Many become fearful of the attacks and therefore isolate from social gatherings.
  6. Brain fog looks like abuse fog. Because Lyme disease can affect the brain, patients often look like they are not thinking clearly. This mimics abuse fog which occurs when a person is being abused. Thoughts tend to be hopeless, distorted, and disorganized. Patients are unable to concentrate, to comprehend during reading, have memory issues, and poor mental clarity. Everyday tasks can become more difficult including participating in therapy.
  7. Depression is common. All chronic illnesses potentially cause major depression due to the recurrent nature of the disease. Depression can range from moderate to severe levels and occurs in approximately 60% of patients. Feelings of being moody and irritable are common. Inflammation, pain, interpersonal stressors, economic loss, and a sense of doom contribute to the severity of the depression. Typical depression remedies do not work on Lyme patients. Therapy is very helpful as are support groups with other Lyme patients.
  8. Psychological ramifications are untreated. Most therapists are not aware of the damaging effects of a long-term chronic illness like Lyme disease and as a result, fail to properly diagnose. As a result, some Lyme patients are unnecessarily hospitalized in mental facilities. This further increases the existing social isolation done by friends, family, and community which contribute to feelings of loss.
  9. Increase in suicidal and suicide. Living with Lyme disease is hard and debilitating. Friends and family rarely comprehend the magnitude of the disease resulting in a feeling of isolation. Discouragement, fear, helplessness, frustration, loss, grief, and loneliness are a result. As the disease progresses and mobility or cognitive functioning decreases, suicidal idealization increases. Some, seeing no way out, do unfortunately take their own lives.

Lyme patients often feel abandoned by the medical community, friends, and family members. It is imperative that therapists be sensitive to this and not contribute these feelings whether by accident in misdiagnosis of other mental illnesses or more intentional by not being empathetic to a person suffering from a chronic illness.

If you or someone you know is struggling, please reach out for assistance. The national suicide prevention lifeline is 800-273-8255 or www.suicidepreventionlifeline.org.

Christine Hammond, MS, LMHC

Christine is a Licensed Mental Health Counselor by the State of Florida with over fifteen years of experience in counseling, teaching and ministry.  She works primarily with exhausted women and their families in conflict situations to ensure peaceful resolutions at home and in the workplace. She has blogs, articles, and newsletters designed to assist in meeting your needs.  As author of the award winning book, The Exhausted Woman’s Handbook, Christine is a guest speaker at churches, women’s organizations, and corporations.  You can connect with her at her website Grow with Christine at www.growwithchristine.com.

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

https://madisonarealymesupportgroup.com/2019/04/07/missing-links-connect-the-dots-between-lyme-mental-health/

https://madisonarealymesupportgroup.com/2019/05/09/ilads-announces-1st-ever-conference-for-mental-health-issues-related-to-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2018/08/25/neuropsychiatric-lyme-borreliosis-an-overview-with-a-focus-on-a-specialty-psychiatrists-clinical-practice/

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

https://madisonarealymesupportgroup.com/2017/11/01/lyme-mental-illness-dr-jane-marke/

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

https://madisonarealymesupportgroup.com/2018/12/20/diagnosing-ld-in-children-with-neuropsychiatric-illness/

Please remember, there are other pathogens that can cause neuropsychiatric issues. Recently, this came out about a young boy with schizophrenia-like symptoms who was diagnosed with Bartonella:  https://madisonarealymesupportgroup.com/2019/03/21/bartonella-sudden-onset-adolescent-schizophrenia-a-case-study/

Toxoplasmosis, found in the Ixodes ricinus tick (castor bean tick) causes many mental issues and psychiatrist E. Fuller Torry believes that 75% of schizophrenia is associated with infections, with Toxo a significant portion.  https://madisonarealymesupportgroup.com/2016/05/21/toxoplasmosis/

 

A Reality of Lyme Disease We Need to Talk About

https://www.yahoo.com/lifestyle/reality-lyme-disease-talk-190046483.html

A Reality of Lyme Disease We Need to Talk About

Amy T.
The Mighty
The article in the above link describes how we need to discuss the issue of suicide with Lyme patients. Go to link for full article.

The Dementia Letters Project

https://samaritanministries.org/blog/member-spotlight-kathryne-fassbender-of-the-dementia-letters-project?

Kathryne Fassbender of the Dementia Letters Project

Brittany Klaus Jul 26, 2019

fassbender

Kathryn Fassbender

A passion for serving the elderly has led Kathryne Fassbender to start a dialogue about dementia to help both those living with the condition and their care partners.

At DementiaLettersProject.com, the Wisconsin resident and certified dementia communication specialist is creating the dialogue with input from care partners, family members, medical staff, and, most importantly, the individuals living with dementia.

The letters, she says, “can be (written) to dementia, to their future self who they fear might have dementia, or to a loved one with dementia. It can be expressing those fears, sharing their story of dementia, or sharing the gifts of dementia.”

Dementia is, according to CaringKind.com, the loss of cognitive functioning—thinking, remembering, and reasoning—and behavioral abilities to an extent that it interferes with a person’s daily life and activities.

“Dementia is an umbrella term that includes several different types of dementia with their own unique characteristics,” she says. “While dementia can take much away from one’s life, it does not take away their own experiences, joy, or spirit.”

Kathryne’s service to those affected by dementia started on a volunteer basis through middle-school service projects. She focused on aging.

“I was drawn into helping those with dementia first by finding that I connected well with individuals with dementia,” she says. By seeing the great misunderstanding her classmates had about the disease, she felt an even greater pull to work with those living with dementia.

Then in 2005 her grandmother was diagnosed with vascular dementia.

“Around that time not only was I experiencing dementia personally, but I was seeing how professionally it might evolve and become a professional vocation,” Kathryne says.

There is great healing through storytelling, and letter writing is a beautiful and easy form of storytelling.  Kathryne Fassbender

She earned her undergraduate degree in art therapy at Edgewood College in Wisconsin and interned at an adult day program that focused on dementia. From there she has gone on to work as a life-enrichment specialist and now leads dementia training workshops, works as a family consultant, speaks at conferences, and, in 2017, formed the Dementia Letters Project. Besides earning her CDCS last year, she also has earned a certificate in arts and health therapy.

Kathryne attributes the start of the Dementia Letters Project to “a couple of things colliding.”

She says she was beginning to discover people with dementia like Brian LeBlanc and Kate Swaffer who write blogs and are “calling out for people to recognize them and recognize their story and that their story is not what all medical professionals are telling us.”

“It’s not all doom and gloom, it’s not all memory loss and becoming medicalized,” Kathryne says.

She also noted family members and staff at a care community saying that they had fears about dementia but were afraid to share them and needed a platform where they could do that.

The Dementia Letters Project encourages others to share their story of dementia by writing letters for submission to DementiaLettersProject.com or for sharing within their family.

“These letters can be written to dementia itself, to the individual’s future self, or to a loved one with dementia,” she says. “It can express fears and joys about their personal story of dementia.”

Kathryne emphasizes that these letters are not all about fears, such as worry about when a loved one might the name of their children. It is also about those moments spent together that might not have happened without dementia. The goal of the Dementia Letters Project is to build a community that is “wealthy in hope and connection” for someone with dementia as well as friends, family, and care partners. The website also includes links to resources and Kathryne’s blog.

“My hope with the Dementia Letters Project is to allow those who may not want to be a visible voice via platforms like a blog, book, or speaking engagements to still be able to share their voice,” she says. “I also want families and community members to help us deepen the reality of dementia, to share their fears, their joys, their experiences. There is great healing through storytelling, and letter writing is a beautiful and easy form of storytelling.”

Kathryne says that dementia is more than what we’re reading in news articles or seeing on TV specials. It’s not only despondency; there is also joy, hope, and light—and conveying that to families and care communities has been Kathryne’s mission over the past two years.

“We need to be visionaries and servants of the Lord to individuals with dementia, despite our own fears and misunderstandings,” Kathryne says. “We have a duty to grow in knowledge about dementia and aging so that we can better minister to others.”

At the same time, Kathryne says we must not “medicalize” someone with dementia; we cannot forget to include their faith with the sudden checklist that appears with the diagnosis—making sure they eat, sleep, are dressed, and take prescribed medication. She encourages family members, friends, and care partners to ask themselves how they can make sure that their loved ones are still practicing their faith. Encouraging someone with dementia in their faith can be as simple as singing hymns with them or saying the Lord’s Prayer together—things that are ingrained in them, firmly rooted in their emotional memory.

To someone who is struggling with dementia, Kathryne says, “Your value never decreases in God’s eyes, and your ability to grow in faith never ceases.”

Kathryne spreads awareness and builds bridges by speaking at conferences. She realized there was a need for people who aren’t medical professionals but who are working with someone living with dementia to “enter the public speaking round.” She describes the medical community as being very “siloed,” especially when it comes to aging and dementia. Doctors and nurses will be in one silo and think they’re right, while academic researchers will be in their separate silo, and then those who take a more creative approach to dementia care will be in their silo.

“We need more bridges,” Kathryne says, “because we’re not really going to break the barrier of where we are right now with knowledge of dementia until we start communicating with each other and learn how to put our language into another person’s language, and then be able to share that with families. That’s where I am—trying to figure out that spot, that in-between spot, that can put medical research and creative aging language into layman’s terms.”

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**Comment**

Please remember that both dementia and Alzheimer’s can be caused by Lyme/MSIDS. Deal with the infections and you can often gain cognitive ability back:  https://madisonarealymesupportgroup.com/2018/10/03/chronology-of-research-on-lyme-disease-dementia-alzheimers-parkinsons-autism/

https://madisonarealymesupportgroup.com/2019/06/22/dementia-from-illness/

https://madisonarealymesupportgroup.com/2019/04/27/breaking-news-definition-of-lyme-disease-dementia-has-improved/

https://madisonarealymesupportgroup.com/2018/03/25/a-brief-history-of-neuroborreliosis-research-dementia-an-inside-look-at-two-researchers/

https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/

https://madisonarealymesupportgroup.com/2019/04/09/the-diagnosis-is-alzheimers-but-thats-probably-not-the-only-problem/

https://madisonarealymesupportgroup.com/2017/01/04/aluminum-alzheimers-ld/  Within this article, Dr. Marc Siegel explains on ‘Fox & Friends’ how Kris Kristofferson was diagnosed with Alzheimer’s but actually had Lyme Disease.  (Warning:  the news reporter propagates a myth that “One antibiotic,” prophylactically will cure LD if used early.)

The Worst Thing About Lyme Disease Is What It Does To Your Mind

https://folks.pillpack.com/the-worst-thing-about-lyme-disease-is-what-it-does-to-your-mind/

The Worst Thing About Lyme Disease Is What It Does To Your Mind

Lyme disease doesn’t just affect your body. It can also cause paranoia, anxiety, depression, and sudden flashes of inexplicable rage.

My friend and I are walking to dinner when it hits. My jaw clenches, my hands curl into fists, and it feels like my head will explode. My mind fills with overwhelming rage over absolutely nothing and everything remotely annoying that’s ever happened to me. I try to distract myself by listening to my friend, but I can’t hear her over the cacophony of my racing thoughts. Intrusive violent fantasies take over. I resist the urge to stomp my feet and scream. There’s not much that I can do at this point. I just tell myself it’ll pass… and a few minutes later, it does.

Rage is one of many mental health issues people with Lyme Disease face. A study in Neuropsychiatric Disease and Treatment found that 68 percent of Lyme patients experienced explosive anger, homicidal thoughts, and/or suicidal thoughts. Other studieshave found that 54 percent of Lyme patients suffer from irritability or mood swings, 23 percent have anxiety, 21 percent experience depression, and 13 percent meet the criteria for obsessive compulsive disorder.

I’m one of those people. And I am far from alone.

Christina Giaquinto experienced extensive anxiety after being diagnosed with Lyme disease. Credit: Christina Giaquinto

The Mental Cracks Of Lyme Disease

Kerri Lynn Neugebauer, a 47-year-old marketing and talent director in Pittsburgh, experienced intense paranoia while she was suffering from Lyme. “I thought I was being followed when I was out,” she remembers. “I would wake up in the middle of the night clawing at the walls because I thought I was trapped. And every time we came home from being out, I thought someone was in the house.”

For Kirsten Stein, a 49-year-old Bay Area Lyme Foundation board member in California, the primary mental health symptom was anxiety. “I have been flying in planes since I was 12 years old, yet while experiencing symptoms immediately prior to being diagnosed, I had a panic attack on airplane out of the blue,” she says.

“I would wake up in the middle of the night clawing at the walls because I thought I was trapped. “

“As someone who has experienced anxiety in the past, I can always tell the difference when it is ‘Lyme anxiety,’” says Christina Giaquinto, a 28-year-old life coach in New Jersey. “When someone experiences [non-Lyme] anxiety, it is because they are thinking of something that causes a physical reaction. With Lyme, it is the complete opposite. It attacks without cause. You feel very trapped because there is nothing you can do to fix it since there is no cause.”

Giaquinto also experienced depression and derealization from Lyme.

“I constantly felt like I was in a video game watching everyone else live,” she says. “It took away my sense of self.”

Why Lyme Causes Mental Health Problems

Understanding of the mechanisms by which Lyme causes these problems is still in its infancy, but what do know that the bacteria that cause Lyme can get into the central nervous system, and inflammation in the brain and throughout the body can lead to mental health symptoms, says psychiatric physician Rupali Chadha, MD.

Because Lyme infects the white blood cells of the immune system, it can also throw off your gut and brain microbiome, which can in turn lead to imbalances of neurotransmitters and hormones, says Bill Rawls, MD, an integrative health expert on Lyme and other chronic illnesses. “While we don’t have definitive data on a cause or prevalence, we do see patients with Lyme disease in psychiatrists offices,” says Chadha.

“Feeling like your brain is on fire is bad enough, but not being understood by the medical profession or by the people around you makes everything 10 times worse,” says Rawls.

Mental illness associated with Lyme can come not just from the Lyme itself but also from certain treatments, as well as from knowing you have a chronic and difficult-to-treat illness. Mike Robinson, a 53-year-old cannabis researcher in Santa Barbara, developed depression and anxiety as a result of receiving a Lyme diagnosis and says it worsened after antibiotic treatment. He also chalks his mental health struggles up to “the way it makes your body feel, the neuropathic pain it causes, and the stigma about it.”

People with neurological Lyme disease often test negative for Lyme, says Wendy Adams, Research Grant Director at the Bay Area Lyme Foundation. This means that instead of receiving Lyme treatment, they’re frequently given labels such as OCD or schizophrenia without receiving help for the underlying issue.

Mike Robinson, a 53-year-old cannabis researcher in Santa Barbara, developed depression and anxiety as a result of receiving a Lyme diagnosis.

What To Do When Lyme Affects Your Mental Health

If you’re struggling with mental health symptoms that may be due to Lyme, Chadha recommends seeing a physician rather than just a therapist about it, since treatment will require you to get to the physical root of the issue. “Therapy may be very useful and may be recommended and added,” she says. “But if someone has Lyme disease and develops psychiatric symptoms, they need to see if physician to see if they require biological treatment i.e. medication.”

Rawls usually recommends antimicrobial herbs to patients dealing with mental illness and other neurological symptoms of Lyme, since antibiotics aren’t always able to kill Lyme in the central nervous system and herbs can also help restore immune function. The herbs he uses to heal the nervous system include berberine, andrographis, cat’s claw, Japanese knotweed, garlic, and sarsaparilla. “Healthful diet, clean environment, low stress, and an active lifestyle are all essential for overcoming chronic Lyme disease,” he says.

Even if Lyme sometimes takes over my mind, it doesn’t have to take over my life.

In the meantime, be as patient with yourself as you can. Due to the myth that mental illness is within your control, it can be tempting to blame yourself, especially with symptoms like rage that people have trouble sympathizing with. If Lyme causes you to engage in behavior you wouldn’t otherwise, Rawls suggests forgiving yourself, as you’re dealing with an illness, and focusing on doing better next time. Reducing your stress and gaining as much control over your life as you can will help, he says.

Though my journey with Lyme isn’t over yet, my rage has gotten easier to deal with because I’ve learned a new approach to it. Instead of just getting more mad about the fact that I’m mad, I validate how I’m feeling and try to do something nice for myself, like getting something to eat or drink or lying down and resting. I remind myself that it’ll pass, and if it comes again, it will pass again after that. Even if Lyme sometimes takes over my mind, it doesn’t have to take over my life.

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**Comment**

Please keep in mind that although Dr. Rawls is a doctor, he’s now in the business of selling herbs.

Regaining Control Of Your Day, Life – Why Agency is Important For Lyme Warriors

https://globallymealliance.org/regaining-control-day-life-agency-important-lyme-warriors/

Copy-of-MyLymeLife_2-4-1


by Jennifer Crystal

Agency—or, having a voice, having the power to make free choices about issues related to you or your body—has been a big buzzword in the news lately. I’ve been thinking about the word in the context of my own life.

For nine months, I was in a serious relationship with a man who seemingly understood and supported my needs as a chronic Lyme patient. And then, suddenly and without warning, I wasn’t. He decided he was done and simply informed me of his choice; I had no say in the matter.

Had the breakup happened mutually, or at least over time—with the discussion and effort we’d promised each other—it still would have been difficult, but at least I would have had some agency. And for a patient of chronic illness, that’s not a small thing.

Having the bottom drop out on my personal and emotional life was a sad reminder of the ways it had dropped out on me physically, many times. The chronically ill, and people who suddenly become sick or injured, are stripped of agency. It happens when we get sick without warning, when we can’t control how or if we’ll get better, when we’re dismissed by medical professionals. As a result, it’s that much more frustrating when we can have a say about something, but aren’t granted it.

Everyone deserves a voice. I learned this years ago as a summer camp counselor. During counselor meetings we would discuss issues campers were having due to behavioral challenges. A wise colleague taught us that every child needs four things: love, safety, fun, and power. When one of those basic needs is threatened, kids act out. I readily understood why children need love, safety, and fun. But I realized they need power, too, because they are often told what they can and cannot do; they don’t feel like they have a say over their lives. Giving them agency makes them feel more in control. Campers were less likely to break cabin rules if they helped create them.

When a Lyme Literate Medical Doctor (LLMD) finally put the pieces of my medical puzzle together and made an accurate diagnosis of Lyme disease—in addition to the co-infections babesia and ehrlichiaI at last felt I was heard and validated. Treatment was long and arduous and I had little control over how I felt day to day, but as I regained strength, I also regained agency. Over time, I could rely on my body more. I eventually knew when I would have good energy and when I wouldn’t, and learned habits to promote the good energy. I learned to speak up for my needs. Tick-borne illnesses were no longer completely running my life.

Then the bottom dropped out again: I relapsed. I fell into a pit of despair, not only because I was physically back at ground zero, but because I’d had no say in getting there. Sure, I’d taken on a lot and gotten overly stressed, factors that I now know can play a role in relapse. But the relapse itself was not my doing. That was up to the spirochetesthat ran rampant in my body. I hated that I was once again at the whim of my illnesses, not of my own free will. I couldn’t work, live independently, exercise or do anything I wanted to do, and I railed against that loss of freedom.

Cognitive behavioral therapy helped me to take control over little things, even though so much was out of my hands. I had no say as to whether the antibiotics would work, how long it would take for me to get well, or if I even would. But I could control choices that would help my chances of my achieving remission. I could parse out my energy. I could limit screen time that riled up my neurological symptoms. I could eat healthy foods. I could say no to going somewhere or doing something when I didn’t feel well enough to do so.

And I could say no even if I did feel well enough to do something. One night during my recovery, my parents invited me out to dinner. It was a sweet and generous offer. They were surprised when I declined, because I seemed to have good energy that night. Why wouldn’t I go out if I could? But I didn’t want to go out to dinner. I wanted to stay home and have a little time to myself, maybe call a friend. Making decisions about what I wanted to do, instead of feeling like I had to do something just because I could, was an important way of maintaining agency.

We can’t always guard against the bottom dropping out in life. But sick or healthy, it’s important that we allow ourselves agency over those small things we can control. And it’s especially important for us to respect others enough to give them a say over matters that pertain to them or their bodies. We all want to take part in our own lives, not have life just happen to us. Everyone deserves that power!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com

 

 

 

How to Set Healthy Boundaries

https://anutherapy.com/blog/how-to-set-boundaries

HOW TO SET HEALTHY BOUNDARIES

By Kacie Mitterando. LMSW

“Daring to set boundaries is having the courage to love ourselves, even when we risk disappointing others.” –Brene Brown

This week I read someone describe boundaries as the “new trend” in mental health. I like this mental health trend because boundaries are important, and setting them may even be the key adjustment we need to resolve feeling drained and spread too thin.

At the root of it, boundaries are the way in which we show others what we will accept and what will not accept in our relationships with them. For a multitude of reasons such as guilt or childhood trauma, we may not set these boundaries with those closest to us and are often left feeling used, drained and resentful towards people (or careers) we normally care deeply about. Boundaries are an example of self-love and setting them allows you to focus on protecting yourself and re-building your inner peace.

What are some signs you might need to set boundaries?

–        You’re having feelings of overwhelm several, or most, days of the week

–        When someone asks you for help with something you feel resentful towards them

–        You daydream about dropping your career or responsibilities and disappearing for a bit of time

–        You’re finding that time to yourself is limited as most of your time is spent with those around you

–        You initially think that you’re worried about hurting someone by being open and honest with your needs, however, you realize that you’re actually worried about their angry response

Understanding that it may be time for your to set boundaries in your life is step one, however, actually setting the boundaries with those around you can be difficult. While I recommend working alongside a therapist throughout the boundary-setting process, below are a few tips to help get you started and validate the importance of your needs.

1.     Become clear on what your boundaries are:

Take a mental inventory of what is important to you – Is it the way you are spoken to? Do you feel as though your physical needs and personal space are being violated? Are those around you shutting down your inner thoughts?

2.     Saying “no:”

I know this one always seems much easier said than done, however, sometimes we need to go back to the basics to find true peace. Sarri Gilman, an author and psychotherapist discusses a skill we all embody that helps us say no much easier – she calls it our inner sense of wisdom. This wisdom is often expressed through a tiny voice inside our head that either tells us “yes” or “no” to a task, event or opportunity that comes up. Practice tuning in to this inner wisdom to assist you in making decisions that are fulfilling and honoring your true needs.

3.     Expect to disappoint:

When setting boundaries with those around you, your loved one may initially become angry and upset with you. This can often cause you to want to pull back on the boundary and not honor your need, however, this reaction often proves that the boundary was necessary. Remind yourself that if you did not set this boundary, bitterness and resentment would likely have spread throughout the relationship over time and could have caused a large falling out. Even if someone is initially upset, those who respect your boundaries will end up becoming some of your most fulfilling relationships.

Sometimes boundaries my seem cold and distant, or like you’re trying to escape someone (or that someone is trying to escape you). Elizabeth Earnshaw stated “when people set boundaries with you, it’s their attempt to continue the relationship with you. It’s not an attempt to hurt you.” Ultimately, boundaries are our way of strengthening our relationships with those around us by deepening the connection with ourselves. By setting a boundary with the people you love the most you’re able to maintain, or begin, a healthy and strong connection with them.

No one becomes a master at setting boundaries immediately. It is a self-care practice that can take years to master. Know that you are worthy of honoring your innermost needs and fostering a fulfilling life of love and compassion with those around you.

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For More:  https://madisonarealymesupportgroup.com/2019/07/08/how-to-deal-with-lyme-skeptics-get-the-support-you-need/

https://madisonarealymesupportgroup.com/2019/05/27/have-you-been-told-its-all-in-your-head-the-new-biology-of-mental-illness/