Archive for the ‘Lyme’ Category

Finding Happiness Even When You’re Chronically Ill

https://www.lymedisease.org/happiness-when-chronically-ill/

Finding happiness even when you’re chronically ill

By Mark Rego, MD

10/10/23

In my years of psychiatric practice and my following years of illness, one problem has appeared unsolvable. How does someone who is chronically ill (me included) build a happy life?

The usual recipes for happiness simply do not work if your life is marked by continuous illness. The obstacles of disease will sabotage plans taken from normal life.

So, how do you advise someone whose life has been brought to a halt by illness on how to build a new, contented existence? Is there a different recipe for the chronically ill?

Chronic illness: physical and mental dimensions

So, what and who do I mean by chronically ill? What are the limitations of being ill, and how do they thwart the usual formulas for happiness? And, finally, is there a way around these barriers?

The diseases I have in mind are things like rheumatologic disorders (severe arthritis, such as rheumatoid arthritis and Lupus), neurologic disorders (multiple sclerosis, degenerative diseases), severe mental illness (when severe, almost any mental disorder fits here), injuries that leave you impaired and in pain, cancer, and other severe medical conditions, such as organ failure (congestive heart failure, kidney failure, liver insufficiency, significant breathing impairment, etc.). [Editor’s note: and persistent Lyme disease!]

When serious enough, these illnesses have something in common. They leave you greatly diminished. This can be forever or for long stretches that will undo much of your life.

There is less of all of you, not just a bad bone, back, or blood test. You can no longer get up in the morning and go out to live your plans. Work, taking care of yourself, having regular personal interactions, and, lastly, some frequent enjoyment become parts of your past.

Your shrinking world

This is not normal aging or the physical limitations that many people face. It is a fundamental change in all of your life. A change that shrinks your world to a lesser version of everything you knew.

People will compliment your fighting spirit. You are brave and heroic and have amazing coping skills. But it rings hollow. In reality, you tread water very well. Or, perhaps, you are told it’s the journey, not the destination. But the sick already have a journey; what they want is a life.

You work hard to get better, go to doctors, take medicines, and do rehabilitation and psychotherapy. If you’re in this group, you know that this work is never done.

What troubles me most about these situations is wherever I look for advice on building a happy life, these unlucky souls are not included.

Finding happiness in sickness and in health

Such advice is generally based on either finding meaningful activity or having strong connections to others. How does one do these things when isolated and disabled from chronic illness? Trouble walking, shortness of breath, persistent pain, problems with mood and thoughts, or the low energy that is almost universal in this group make even brief tasks quite difficult.

For meaningful activity or connecting to others, you need to be places on certain days, at certain times, and for a certain number of hours. Sickness knows no such schedules. Bad days appear when they will.

If lucky, you have folks who will visit. But these are visits to your life; they are not in your life the way immediate family members, coworkers, and others you may see and talk to regularly are. While such visits are greatly appreciated and enjoyed, they do not constitute the full dimensions of a social life. Being in someone’s life means knowing the ins and outs of their days. The catch-ups that occupy many visits are not needed in these connections.

Another common obstacle to happiness is depression itself. This is very often a part of the sickness process. But if we look at research about impediments to recovery from depression, we find that people who are in pain, chronically ill, disabled, or isolated all have difficulty recovering. The sick are often all of these.

Of course, sometimes things come together, and a different version of life takes shape. People find a place for themselves, maybe some work that is doable and meaningful. I am not sure how often this happens, but such experiences are not the rule.

Step 1: Build back a version of what you had

So, what are some guidelines for happiness for the sick? The first step is to build back a version of what was lost. This entails calls and emails to invite friends for a visit. As stated above, this will not be a full replacement for a social life, but without connections, people wither and become depressed. In addition, activities to pass your time with a modicum of interest or enjoyment must be found. Time passes very slowly without things to do.

The burden of rebuilding falls squarely upon the chronically ill. A life must be built brick by brick. But as discussed above, this is not enough. There is more work to be done.

Step 2: Acceptance as a necessary bridge

The next step is the work of acceptance. It is hard to underestimate how deeply we can reject the reality of our lives. Emotional acceptance of circumstances is not assured by the passage of time. There are, of course, many ways to walk this leg of the journey. Religions have ways to approach this, but many people find their own paths. This work is an ongoing process. Grieving losses such as your own health, work, and social life can be a lifelong process.

Acceptance is a bridge to the next step. This is because the flip side of acceptance is letting go of the burdens of normal life. By accepting your plight, you also allow yourself to participate less in worldly goings on. This frees you to spend time as you like.

Step 3: Building a bigger internal world

This brings us to the final and most important step: building an internal life. Normal life is lived in the world. It gets bigger as we do more, grow our skills and relationships, and expand our horizons. Chronic illness ends this.

As your external life grows smaller, your internal life must now expand. The path is lit by wonder, amazement, curiosity, and interest. Find what amazes you and begin there. This might be revisiting things that were fascinating in school but you could not do more of. Or perhaps you are learning something you have always wondered about. An art, craft, skill, a secret story to follow, or a new one to tell.

In my case, I took up portrait painting (something I never would have imagined) and studied areas of science that I loved in school but did not have any role in my job as a psychiatrist. Each time I begin one of these, I am excited about what I will discover. They are new worlds for me.

Find what amazes you and begin there

How does a chronically ill person find this? The way is to ask what amazes you. What makes a small smile appear on your lips, not because it is funny but because it is beautiful and amazing, incredibly interesting, beyond understanding? Then open a book, a web page, or whatever tools you need. A daily meal of what expands the horizons within your mind becomes the guiding path of your new life. The more something astonishes you, the more space it will open within you.

There is no one you must help here, nothing to build or express. No homework. No reports. No schedule or tasks to do. You do it just because it amazes, excites, piques your curiosity. This is enough and has been the driving energy behind the most incredible lives. This is when you exercise the flip side of acceptance and excuse yourself from needing to achieve something other than to be very interested.

Will this lead to other things? Maybe. But the point is, it does not need to. It will be just you and a happier you with a spacious inner world to explore.

The chronically ill build a happy life by constructing a version of normal life, finding acceptance for a new self, and, most importantly, expanding their inner life. You can reside in a small part of the external world but have endless room to roam in what delights and astounds you.

Mark Rego, MD, is a psychiatrist and a clinical assistant professor at the Yale School of Medicine. He is the author of Frontal Fatigue: The Impact of Modern Life and Technology on Mental Illness. You can learn more about his work at his website.

For more:

Category:

Activism, Lyme, Psychological Aspects

Oct. 31 Webinar: A Rash of Tickborne Illnesses: Current Challenges With Diagnostic Testing

Upcoming Webinar: A Rash of Tickborne Illnesses: Current Challenges With Diagnostic Testing

Date: Oct 31, 2023 9 a.m. PDT/12 p.m. EST

Please join us for an upcoming webinar, “A Rash of Tickborne Illnesses: Current Challenges with Diagnostic Testing,” an hour-long webinar featuring Elitza S. Theel, Ph.D., D(ABMM) and Elizabeth Lee-Lewandrowski, Ph.D.

  • Understand the incidence and prevalence of tickborne illness
  • Review the current testing methodologies available for Lyme disease
  • Explore current diagnosis guidelines for Lyme disease
  • Discuss the advantages of Point-of-Care diagnostics for Lyme disease

Go here to register:  https://gateway.on24.com/wcc/eh/3300431/lp/4379756/a-rash-of-tickborne-illnesses-current-challenges-with-diagnostic-testing

Category:

Lyme, Testing

Woman With Lyme, Babesia, & Bartonella Turns to Carnivore Diet & Improves

https://www.dailymail.co.uk/femail/article-12446991/woman-plant-based-diet-killing-lyme-disease-carnivore

EXCLUSIVE – Woman, 38, whose undiagnosed Lyme disease left her ‘MINUTES from death’ reveals how plant-based diet nearly DESTROYED her body – before she turned to strict carnivore regimen that completely cured her symptoms

  •  Angela Lerro, 38, from Los Angeles, stopped eating most meat and fish in 2013
  • She began fainting up to 20 times a day and suffering from anaphylaxis
  • Angela learned her diet was killing her after being diagnosed with Lyme disease

By CAROL DRIVER FOR DAILYMAIL.COM

PUBLISHED:

A woman who was advised to follow a plant-based diet after being diagnosed with breast cancer and having a mastectomy has opened up about how shunning meat almost killed her while she was suffering from undiagnosed Lyme disease. 

Angela Lerro, 38, from Los Angeles, stopped eating most meat and fish and lived mainly on vegetables and colorful salad dishes for three years after undergoing surgery in 2013.

But instead of feeling better, she began fainting up to 20 times a day, breaking out in hives and rashes, and suffering from heightened anxiety and anaphylaxis. She became so bloated, she looked pregnant.

The reiki master was told it was post-cancer ailments, but her symptoms were actually caused by undiagnosed Lyme disease, which she’d been unknowingly battling for over 30 years. (See link for article)

_______________

**Comment**

This is quite the journey this poor woman has lived.  I pray something within will help someone out there who has barked up every tree but still hasn’t found any answers – or should I say THE answer?

As always, this is not medical advice.  Make sure you are working with an experienced Lyme literate doctor.   But, as is often the case with Lyme/MSIDS, we simply have to experiment.

Angela went on the “Lion Diet” otherwise known as the “ultimate elimination diet,” to reduce inflammation.  Angela believes that ruminant fat, meat, and organs contain the most bioavailable nutrients the body can absorb and use.  She states borrelia feed off gluten, grains, and sugar and when they are consumed they create inflammation.  When she ditched her low-histamine paleo diet for bison, veal, lamb, and venison many of her symptoms disappeared within three months.  She no longer fainted and her mobility improved.

She also had undiagnosed Babesia and Bartonella.

Angela helps others.  Go here for her info: https://www.instagram.com/meatbasedmedium/

I too have improved dramatically with diet; however, diet really didn’t appear to be a problem until later – after I had treatment for 5 years.  Now, could a dietary switch have helped?  Possibly, but as you know – it’s nearly impossible at times to distinguish what is doing what.  It wasn’t until I developed a very painful Baker’s Cyst and what appeared to be “arthritis” that I got serious about diet.  I’m happy to report that I’ve experienced great improvement by ditching gluten, most dairy (except hard cheeses and whipping cream), and trying valiantly to eliminate sugar.  That last one is the tough one for me.  🙂

or more:

Category:

Babesia, Bartonella, diet and nutrition, Inflammation, Lyme, Treatment

Two More Dead From Lyme Disease

https://montrealgazette.remembering.ca/obituary/naomi-friedlander-1088887718

FRIEDLANDER, Naomi Lynn
Passed away on September 29, 2023 in Toronto, Ontario.

In 2001 Naomi began a struggle with Chronic Fatigue Syndrome, later determined to be un-diagnosed Lyme Disease leading to PTLDS, that she would endure for the remainder of her life. She fought tenaciously to find and obtain medical assistance for a little-understood and under-researched disease. In recent years her condition improved; she began to do limited amounts of volunteer work, including at the Toronto International Film Festival, and was hopeful that she might be able to re-enter the workforce on a part-time basis at some point in the future. These dreams were cut short by a diagnosis of pancreatic cancer in 2020. Once again she fought hard – enduring five months of chemotherapy, a window of hope, a final round of chemotherapy and radiation treatment.  (See link for more)

_____________

https://www.danekasfuneralchapel.com/obituary/ryan-smith

RYAN DUANE SMITH

Ryan Duane Smith was born on January 30, 1979, in Davenport, WA, to Neal D. and Donna Jo Smith.  He entered into heaven at his home in Gifford, WA, on October 5, 2023, due to complications of Lyme disease.  Ryan attended Columbia School in Hunters, WA, graduating in 1997.  He then received his B.S. in Computer Science / Math in 2001 from Eastern Oregon University in La Grande, OR.  Ryan enjoyed all sports and played football, basketball and baseball.  He was especially happy to get to play college football for EOU.

Ryan loved helping others and especially enjoyed farming with Bud and Donna Sampson through his junior high and high school years.  After high school, Ryan began a 22-year career with the WA State Department of Natural Resources.  He served as a wildland firefighter, incident commander, strike team leader, and wildfire investigator.  He became a nationally certified FEMA trainer and taught many classes throughout the Pacific Northwest.  Ryan also worked as a forester until he became unable to walk.  (See link for more)

_______________

For more:

Category:

Activism, Lyme

Lyme & Coinfection Update: Dr. Armin Schwarzbach

http://

An Update for Lyme & Co-infections

Dr. Armin Schwarzbach/Nordic Laboratories & dnalife

Oct. 9, 2023

Within the field of infections, new research is in constant development. During his discussion, Dr. Schwarzbach will cover both what tests he offers through Nordic and dnalife, looking at what could potentially be a great alternative to what the national health service may have to offer. He will also be informing us about new and ongoing testing and considerations, while also touching on the topic of co-infections as an additional concern for patients.

If you go to the Youtube link, you can also view the transcript.

Category:

Activism, Lyme, research, Testing