Archive for the ‘Psychological Aspects’ Category

Lyme on the Brain Podcast

https://www.lookingatlyme.ca/2020/09/discussing-the-effects-of-lyme-disease-on-the-brain-with-dr-leo-shea/

Looking at Lyme, episode 10 with Dr. Leo Shea.

Discussing the effects of Lyme disease on the brain with Dr. Leo Shea III

EPISODES / BY

Podcast here:  https://cdn.transistor.fm/file/transistor/m/shows/17123/4e5cfc06b6c30614524aece0c20d9371.mp3

In this episode Sarah talks about the effects of Lyme disease on the brain with Dr. Shea, a senior staff psychologist, professor and President of Neuropsychological Evaluation and Treatment Services in New York City and Boston. Dr. Shea starts off by explaining many of the effects that Lyme disease has on the brain including the ability to process information, changes in memory, multitasking and high level reasoning. He also explains the importance of understanding the effects on the brain and mental health in terms of what is going on physically to cause these changes. He uses neuropsychological evaluation to measure changes in a person’s cognitive, emotional and behavioural function as a result of Lyme disease. Dr. Shea also notes that results of imaging tools such as a SPECT scan often reflect findings in neuropsychological testing in patients.

“When it does get to the brain…it reduces the person’s ability to function, not only in their general daily life, but certainly in their professional or academic life.”

Dr. Leo Shea

We are introduced to the concept of psychoeducation: educating families, teachers, and employers to better support Lyme patients at home, in school and in returning back to work. Dr. Shea gives a few examples of how students can be supported in their learning. He talks about the added social burden that pediatric and adolescent patients experience within their peer groups, and the implications for those patients. Dr. Shea also touches on the challenge that people with dark skin have in getting a diagnosis of Lyme disease in part due to the different appearance of bites and rashes on darker skin tones.

“Psychoeducation is important so that everybody has an understanding of what this patient is going through and what their role is in supporting the patient”

Dr. Leo Shea

Dr. Shea describes the preceptorship program for physicians through ILADEF, where they are mentored by physicians with many years of experience treating patients with Lyme disease. These physicians (who have treated many Lyme disease patients) have gained a wealth of knowledge and clinical experience that they are able to share. He leaves us with a reminder that much more research is needed in the area of Lyme disease and other tick-borne illnesses.

Related resources

“There’s a need for an enormous amount of research into this so that we get a better understanding of not only Lyme, but all the other tick-borne illnesses”

Dr. Leo Shea

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CanLyme

Looking at Lyme is an educational podcast created by the Canadian Lyme Disease Foundation, designed to increase awareness and empower listeners with expert knowledge.
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Category:

Lyme, Psychological Aspects

Living With Lyme Brain

https://globallymealliance.org/living-lyme-brain/

by Jennifer Crystal

SHORT-TERM MEMORY LOSS, CONFUSION, BRAIN FOG, AND WORD REPETITION ARE JUST A FEW SYMPTOMS OF LYME BRAIN EXPERIENCED BY MANY LYME PATIENTS. HOW HAS LYME BRAIN AFFECTED YOU?

Listen to the audio version of this blog here:

I was recently talking on the phone with a friend who is expecting a baby. “I’m so sorry I didn’t call you back earlier,” she said. “I can’t remember anything these days. It must be ‘pregnancy brain’!”

I knew what she meant. I’ve experienced “Lyme brain,” and the symptoms are similar. Throughout my 20-year battle with Lyme and other tick-borne illnesses—eight of which were undiagnosed and untreated—I have wrestled with short–term memory loss, confusion, brain fog, word repetition, difficulty retrieving vocabulary, and a tendency to mix up words. Other neurological symptoms have included insomnia, hallucinogenic nightmares, migraines, burning extremities and mini seizures.

It’s hard to explain the neurological component of Lyme disease to people who haven’t experienced it. Most people know Lyme causes joint pain, and it does. But when it goes undiagnosed for too long, the bacteria can replicate and cross the blood-brain barrier, invading the central nervous system. A scan of my brain showed that the tick–borne parasite babesia was preventing me from getting oxygen to the left side of my brain. The scan also showed lesions caused by Lyme.

But that scan was done years after my initial tick bite, years after I’d first noticed that my hands trembled when I tried to apply eyeliner, years after doctors had written off my migraines as “altitude sickness” or “stress.”

blog_JC_lyme brain_1

Unfortunately, my story is all too common. The neurological symptoms of Lyme disease are some of the most confused with other illnesses. Besides the brush-off diagnoses I received, patients are often misdiagnosed with multiple sclerosis, Parkinson’s, and/or mental illness. Without proper diagnosis, neurological Lyme disease can lead to paralysis, schizophrenia and even death.

I was one of the lucky ones. My sleep disturbances were unbearable at times, but my day time neurological troubles never got worse than brain fog and word loss. So what did that actually feel like? Imagine molasses seeping through your brain, pouring into all the crevices until your brain feels so full that you wonder if it will explode right out of your skull. Imagine that thick substance sticking to the synapses of your brain, dulling your thoughts, slowing your ability to put those thoughts into words.

It became impossible to read or watch TV. Just skimming the opening paragraph of an article left me confused and frustrated. Sometimes I’d be telling a story to my family—something as simple as, “I ran into an old friend at the pharmacy today”—and I’d stop mid-sentence and ask, “What was I talking about?” I had no memory of what I’d just said or what point I was trying to make. I also sometimes mixed up the syntax such as, “I ran into a friend old at the pharmacy today.”

Other times, I couldn’t come up with basic words. While telling my family that story I might say, “I ran into an old friend at the…at the…at the blank today.” I knew that “today” came after the word I was trying to say, but I couldn’t fill in the blank. Usually whomever I was speaking with could fill it in for me, but I was nervous about that happening in public. I’d be at the pharmacy and suddenly not be able to come up with my zip code when prompted by the pharmacist. Sometimes the word or number would come eventually, as if my brain had done a Google search. Other times I would just try to laugh it off, saying something like, “Wow, I must be really tired today!” I wished I had the more obvious excuse of “pregnancy brain.”

As a writer, I have always been exacting in my vocabulary. Losing the ability to come up with precisely the right word was humiliating. Words are my currency, and I was broke.

Luckily, the antibiotics started beating out the spirochetes in my brain, and slowly things improved. Soon I could read an entire magazine, as long as I stopped in between articles to sit quietly and let my brain rest. Eventually, I could type multi-paragraph emails. The word repetition fortunately decreased. I worked my way up to attending graduate school, writing papers and essays —thinking again at a high level.

blog_JC_lyme brain_2

These days, I still wrestle with some neurological symptoms especially when I’m tired. Recently I was writing a chapter of my next book and called my mom to say, “I’m thinking of a word that sounds like ‘synonymously’ and means two things happening at the same time.”

“Simultaneously,” she quickly said. I smiled, filled in the blank, and continued writing.

While working on my book, I’ve been doing some prompts with a writing group to help generate material. Recently we wrote about things we’ve lost and found. “I’m writing about losing my mind,” I told my mother.

“How do you know you’ve found it?” she joked.

I know because I can write about my experiences with some distance, using exactly the words I want. I know because I can teach. I know because I can read student essays and newspaper articles. I know because I can read entire books—albeit slowly—and I’ve even written one, too. And in the rare event that  I can’t think of a word, I know I can always call my mother.

jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com

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Category:

Lyme, Psychological Aspects

Don’t Medically Abandon People With Neurological Lyme

https://www.lymedisease.org/why-abandon-neuro-lyme/

LYME SCI: Don’t medically abandon people with neurological Lyme

By Lonnie Marcum

Ms. Marcum sent the following written comments to the Tick-Borne Disease Working Group before its last meeting on December 2.

I’d like to thank the Tick-Borne Disease Working Group for your service. Having served on the Tick Biology, Ecology & Control Subcommittee, I appreciate how hard each of you has worked over the past two years on the 2020 Report to Congress. I respectfully submit the following critique of past NIH clinical trials and offer suggestions for the future.

In the 40+ years since Lyme disease was discovered, there have been four federally funded randomized placebo-controlled treatment trials of patients with persistent symptoms following standard treatment (Klempner 1&2 2001, Krupp 2003 and Fallon 2008).

Despite the fact that two of these trials demonstrated some benefit, the IDSA concluded that there is no benefit to repeated antibiotic therapy.

In fact, the Krupp trial clearly demonstrated improvement in fatigue in the patients who received additional antibiotics. Dr. Brian Fallon corroborated this finding in his study, and also reported patients showed improvement in cognitive functioning, physical functioning and pain levels following additional antibiotic treatment.

Fallon study

Following a thorough review of these four trials Dr. Fallon concludes:

“Based on the evidence cited above, one cannot conclude that repeated antibiotic therapy is ineffective in improving certain symptoms associated with post-treatment Lyme disease syndrome. Nor can it be concluded that repeated antibiotic therapy is robustly effective. One can conclude however that approximately 60% of patients with persistent post-treatment Lyme fatigue may experience meaningful but partial clinical improvement in fatigue with antibiotic retreatment.” (Fallon 2012)

Lyme arthritis is the best understood and most studied manifestation of Lyme disease. Even Dr. Allen Steere, who first described Lyme arthritis in 1979, prescribes longer courses of antibiotics. (Steere 1979)

In 2015 Dr. Steere wrote:

“In our experience, some patients do require longer courses of antibiotic therapy for effective treatment of Lyme arthritis. Thus, if there is mild residual joint swelling after a 30-day course of oral antibiotics, we repeat the oral antibiotic regimen for another 30 days. However, for patients who continue to have moderate-to-severe joint swelling after a 30-day course of oral antibiotics, we treat with IV ceftriaxone, 2gm/day. Although there is trend toward greater efficacy with 4 weeks compared with 2 weeks of antibiotics, there is also a greater frequency of adverse events.” (Arvikar, Steere 2015)

Unfortunately, all four of these trials used the same two antibiotics—doxycycline and IV ceftriaxone. So truthfully, all these trials have shown us one thing—that these antibiotics are not effective in every patient with late stage Lyme.

NIH abandones neuro Lyme

As the former head of GlaxoSmithKline, Dr. Allen Roses said “The vast majority of drugs—more than 90%—only work in 30 or 50% of the people. Drugs out there on the market work, but they don’t work in everybody.”  (Connor 2003)

We’ve learned from Dr. Ying Zhang’s research at Johns Hopkins University that there are multiple other off-label drugs and drug combinations that kill borrelia better than doxycycline in the laboratory. (Feng 2016)

Why is it in the past 10 years the NIH has not looked at alternative treatments for the subset of patients with chronic symptoms post-treatment for Lyme disease?

We are less than a year into the COVID-19 pandemic leaving many patients with persisting symptoms of the virus. Science has not abandoned these “long-haulers,” as they are being called.

Why has the IDSA abandoned patients with Lyme who are left with chronic symptoms following standard treatment?

Within weeks of the CDC announcing the COVID-19 epidemic, the FDA and NIH authorized hundreds of clinical trials using off-label drugs. Some of those drugs have shown promise, some have not. And the search continues today.

Why in 40+ years have we not been able to offer these same resources to patients with Lyme and other tick-borne diseases? And more to my point, why is it that some who sit on this panel, are averse to the idea of helping those who continue to suffer? The entire purpose of the TBDWG was to identify gaps and offer solutions. Not to impede progress.

Lyme arthritis is not the only consequence of late stage Lyme.

When Lyme spreads to the nervous system

Left untreated, Lyme disease can spread to the nervous system leading to neuroborreliosis including: (Logigian 1990)

  • meningitis – inflammation of the membranes that cover the brain/spinal cord.
  • encephalitis – inflammation inside the brain
  • myelopathy – inflammation of the spinal cord
  • cranial neuritis – inflammation of the cranial nerves
  • neuropathy – inflammation of the peripheral nerves
  • Bannwarth’s syndrome – “terrible triad” of meningitis, cranial neuritis and painful neuropathy

As it turns out, the most frequently reported “worst symptoms” in the MyLymeData patient registry are neurological (84%.) The most frequently reported neurological symptoms being memory loss and cognitive impairment, sleep impairment, psychiatric manifestations, headaches, and neuropathy. (Johnson 2018)

Unfortunately, neurological Lyme disease symptoms are largely invisible and difficult to quantify. Thus, many physicians, like Dr. Eugene Shapiro, write them off as psychosomatic. And because the test for Lyme is prone to false-negatives, the IDSA leaves these patients with no treatment options and no hope.

Until recently, there hasn’t been a good measurement for patients with these long-standing neurological symptoms following treatment for Lyme disease. Two studies published in 2019 by renowned researchers—one from Johns Hopkins University, the other from Harvard—have given us quantifiable, physiological reasons for these debilitating neurological symptoms. (Coughlin 2018, Novak 2019)

Changes in the brain

The Johns Hopkins study revealed chemical changes and widespread inflammation in the brains of patients with persistent symptoms following treatment for Lyme disease. The Harvard study showed nerve damage (small fiber neuropathy) and decreased blood flow in the brains that may also contribute to dysautonomia.

The fundamental goal of healthcare is to restore “health” by treating the underlying disease. We need clinical trials designed to address the needs of patients with neuroborreliosis.

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When LymeDisease.org polled over 4,000 patients with Lyme, the number one recommendation was that the NIH should emphasize research for diagnosis and treatment of late and chronic Lyme disease. It should also seek ways to reduce treatment failures for early Lyme disease. (Johnson 2019)

The COVID-19 pandemic has taught us much, including what this country can accomplish in a short period—if there is the political will to do so. Yet, for political reasons, the past 20 years of Lyme research sits in a vacuum.

There are two major hurdles in finding an optimum therapeutic end point in treating Lyme disease. 1) a better diagnostic test that is capable of directly detecting active Borrelia burgdorferi infection, and 2) the ability to understand how the presence of tick-borne co-infections (like anaplasma, babesia, ehrlichia, rickettsia and Powassan) may complicate the course of Lyme disease. I would like to see the NIH focus on these hurdles.

My message to those who sit on this panel, wanting to close the door on chronic Lyme, is that in medicine NOTHING is absolute, the science is NEVER settled, and patient care NEEDS to be as individualized as the individual. What works for one may not work for the next. This is why we must listen to our patients. This is why we must continue to conduct research and seek cures.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. In 2019-2020, she served on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org .

References

Arvikar, S. L., & Steere, A. C. (2015). Diagnosis and treatment of Lyme arthritis. Infectious disease clinics of North America, 29(2), 269–280. https://doi.org/10.1016/j.idc.2015.02.004

Connor, S. Glaxo chief: Our drugs do not work on most patients. The Indep. 2003, 8, 1–2. https://www.independent.co.uk/news/science/glaxo-chief-our-drugs-do-not-work-on-most-patients-5508670.html

Coughlin, J.M., Yang, T., Rebman, A.W. et al. (2018) Imaging glial activation in patients with post-treatment Lyme disease symptoms: a pilot study using [11C]DPA-713 PET. J Neuroinflammation 15, 346. https://doi.org/10.1186/s12974-018-1381-4

Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, Slavov I, Cheng J, Dobkin J, Nelson DR, Sackeim HA. (2008) A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 70(13):992-1003. doi: 10.1212/01.WNL.0000284604.61160.2d. Epub 2007 Oct 10. PMID: 17928580.

Fallon, Brian & Petkova, Eva & Keilp, John & Britton, Carolyn. (2012). A Reappraisal of the U.S. Clinical Trials of Post-Treatment Lyme Disease Syndrome. The open neurology journal. 6. 79-87. 10.2174/1874205X01206010079.

Feng J, Shi W, Zhang S, Sullivan D, Auwaerter PG, Zhang Y. (2016) A Drug Combination Screen Identifies Drugs Active against Amoxicillin-Induced Round Bodies of In Vitro Borrelia burgdorferi Persisters from an FDA Drug Library. Front Microbiol. 23;7:743. doi: 10.3389/fmicb.2016.00743. PMID: 27242757; PMCID: PMC4876775.

Hirsch AG, Herman RJ, Rebman A, et al (2018) Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study. BMJ Open 8:e021367. doi: 10.1136/bmjopen-2017-021367

Johnson, L., Shapiro, M., & Mankoff, J. (2018). Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel, Switzerland), 6(4), 124. https://doi.org/10.3390/healthcare6040124

Johnson, L. (2019) Request for Information (RFI): Input on NIH Tickborne Diseases Strategic Plan. https://www.lymedisease.org/nih-lyme-survey-results/

Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A. (2001) Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 345(2):85-92. doi: 10.1056/NEJM200107123450202. PMID: 11450676.

Krupp LB, Hyman LG, Grimson R, Coyle PK, Melville P, Ahnn S, Dattwyler R, Chandler B. (2003) Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 60(12):1923-30. doi: 10.1212/01.wnl.0000071227.23769.9e. PMID: 12821734.

Logigian EL, Kaplan RF, Steere AC (1990). “Chronic neurologic manifestations of Lyme disease”. N. Engl. J. Med. 323 (21): 1438–44. doi:10.1056/NEJM199011223232102. PMID 2172819.

Novak P, Felsenstein D, Mao C, Octavien NR, Zubcevik N (2019) Association of small fiber neuropathy and post treatment Lyme disease syndrome. PLoS ONE 14(2): e0212222. https://doi.org/10.1371/journal.pone.0212222

Steere AC, Gibofsky A, Patarroyo ME, Winchester RJ, Hardin JA, Malawista SE (1979). “Chronic Lyme arthritis. Clinical and immunogenetic differentiation from rheumatoid arthritis”. Ann. Intern. Med. 90 (6): 896–901. doi:10.7326/0003-4819-90-6-896. PMID 312615.

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**Comment**

But, these same people controlling the Lyme/MSIDS narrative for over 40 years have just been handed 91 MILLION dollars to continue abusing patients:  https://madisonarealymesupportgroup.com/2021/01/11/historic-increase-in-lyme-funding-passes-congress-dont-expect-anything-from-it/  (Expect the continued abandonment of neurological Lyme, the denial of persistent infection, and continued abysmal testing.  Instead, there will be yet more climate data on ticks and Lyme vaccine development.)

When will we learn?
We can write the most succinct letters with a plethora of scientific references but it’s all moot if we continue to line the pockets of The Cabal. 

For more on the backstory:  https://madisonarealymesupportgroup.com/2020/09/25/why-should-we-care-about-lyme-disease-a-colorful-tale-of-government-conflicts-of-interest-probable-bioweaponization-and-pathogen-complexity/

Category:

Activism, Lyme, Psychological Aspects

Mom Dealing With PANS & Lyme: “2020 is NOT My Worst Year”

https://www.lymedisease.org/from-a-mom-dealing-with-pans-and-lyme-2020-is-not-my-worst-year/

From a mom dealing with PANS and Lyme: “2020 is NOT my worst year”

Lisa Lew

By Lisa Kilion

2020 is NOT my worst year.

“What are you talking about?” you ask. “You have something the rest of us don’t have–like a private island? A cure to COVID-19?”

Nearly everyone is stressed, distressed, depressed. It’s the year of not being able to breathe, from George Floyd to those suffering complications from COVID-19. It’s the year of feeling trapped in our homes, of existing in a dreamlike state of daily repetition.

And for us PANDAS/PANS and Lyme folks, trapped in our lives.

Yep. Trapped in our lives, just like any other year. Only this year, for the first time, the entire world has experienced a whopping scoop of our secret, isolated experiences. And guess what? They’re not savoring it.

2020 is hellish for many people, most especially the people who have lost someone dear or become ill themselves. And my condolences to you. Several of my friends lost parents this year, people who were older but not ready to die and to die alone. Several of my friends/family became quite ill.

Didn’t have to wait for 2020

The fact is, I didn’t have to wait until 2020 to have these horrid experiences.

Years ago, I lost someone dear to me–my happy, healthy child, when nearly overnight, their personality was gone and in its place a ticcing, depressed child with OCD.

And with this, my family lost even more–my kids lost much of their childhoods, my husband and I lost a normalcy of parenting, as well as outings, vacations, activities. After school football and soccer practices morphed into doctor appointments. Birthday parties morphed into therapy sessions.

Years ago, my own insidious, dormant case of Lyme flared under the stress of saving my child. So this isn’t my worst year, although 2020 is the year of:

  • death
  • illness
  • prejudice
  • isolation
  • depression
  • paranoia of others
  • protecting ourselves against germs
  • not trusting medical advice (hydroxychloroquine–yes or no?)
  • government and social media censorship
  • children being unable to attend school.

If you have a child with a medical illness like PANS/PANDAS/Lyme, then you’ve most likely experienced all of the above already. And I’ll bet this is not the the worst year of your life. I’ll also bet that you’re finding a way to cope.

So for those with P/P and Lyme, here are the boxes to fill in:

Illness?

Check.

Prejudice?

Check for some of us. And for some of us, being a different race or ethnicity makes it even more challenging to receive the proper medical and educational support for these diseases.

Isolation?

Well, sit back down for a long tale.

There is nothing like the isolation of a PANS family living in a world where there is no cure, where people judge your parenting (or your “behavior” if you have PANS yourself), where the social life of your kid is curtailed, never mind your own social life.

There is no isolation like the life of a PANS family when extended family does not understand what is happening, when mainstream doctors don’t believe you, when there is no one treatment and sometimes insurance companies don’t want to cover the costs of the treatments that exist.

There is isolation when your child is too ill to leave with a babysitter, or too at-risk to leave alone even when old enough to drive. There is isolation when one parenting figure must relinquish a job or career to care for the ill child.

Depression?

Us or our kids?

Our kids who are cut off from society, whether from PANS or Lyme or COVID-19, struggle to remain themselves. Our kids who suffer from brain inflammation are submerged in a new world of depression and sink so deeply that their memories of being happy float away like smoke rings. Whether it’s from COVID or PANS, the helplessness over our own situations is all too real.

Paranoia?

Don’t come near me.

Seriously, how many times has a PANDAS parent wondered if another kid in the class has strep? If the dog has strep? If your brother-in-law’s young cousin who came to the family party has a cold which can inflame your child’s brain? (Or, if I myself am carrying it?)

Paranoia is questioning whether you can share the fact that your child has chronic Lyme and is on a cocktail of antibiotics with an emergency room doctor. Paranoia is fearing the doctor who asks why you are using “alternative medicines” and claims that PANDAS isn’t real. It’s retreating into your own worried mind when you hear stories about other PANDAS parents being accused of Munchausen’s.

Paranoid much? Checkcheckcheckcheck.

Protecting ourselves against germs?

This means not showing up to family parties when you hear someone has a “slight” cold, wiping down surfaces (that action did NOT start in the year 2020, folks), imagining the air that others breathe out has a soft gray roundness to it, marking the bacteria. Wearing masks, prior to 2020.

Not trusting medical advice?

This was a hard one for me, as I was brought up to do whatever the doctor ordered (which did help me immensely when working with a LLMD or LLNP and a strict Lyme protocol).

How do you trust when the young doctor tells you that your child’s inability to control air hunger is caused by stress, and then you notice the lab report states your child is positive for Lyme, which the doctor then claims is a false positive?

How do you trust mainstream doctors after the PANDAS/Lyme doctor prescribes medications which completely eradicate the air hunger (caused by Babesia, for those who want to know). And that is only one example.

Media and government censorship?

Why don’t doctors believe in chronic Lyme, again? Why is the IDSA still against it when well over 700 peer-reviewed studies [showing the persistence of Lyme] have been conducted? Why does the government support the IDSA and spend more money on diseases that affect far fewer people? And don’t even go there when it comes to vaccines which children with immune issues are supposed to be exempt from (and protected by herd immunity).

Children unable to attend school?

PANDAS and Lyme can result in:

  • separation anxiety
  • inability to think or focus
  • constant bathroom runs/ need to urinate
  • decline in math ability
  • blurriness which affects reading
  • handwriting
  • impulsivity
  • emotional control
  • sweats
  • joint pains
  • fatigue
  • insomnia

Oh, we tried, years ago, for our child to connect with a class via a computer. But the world was not ready for it. And then 2020 happened and we went virtual overnight (I know, I’m a teacher and it’s been a job x 1,000). But it’s possible.

Checkmate.

So if this isn’t my worst year, what was?

Maybe it was the year my healthy, happy child became ill and no one could accurately diagnose the issue.

Maybe it was the year we HAD to get an attorney to deal with the school system and withdrew $10,000 from our now nearly extinguished savings account, to pay for said lawyer.

Maybe my worst year was when we had to weigh options for a child at risk–why is there a schism between medical and psychiatric support when it comes to hospitalization? What do you do when a medical issue causes severe depression? Why won’t anyone out there help?

Maybe my worst year was when my marriage was dragging along like a bottom feeder. (Note: we are much stronger and happier now.)

Maybe my worst year was when I discovered my other child had Lyme also. At the same time I discovered I did as well, and most likely gave it to my kids when pregnant.

Maybe my worst year was when I was too sick to take my daughter to the swimming class she begged for, when no one at my job knew that I could barely walk down the hall due to dizziness and fatigue, when I gave the best of me to my students and not to my own kids, when I’d collapse on my bed at home after work while my husband cooked dinner, only to listen as conversations drifted upstairs.

But….

But that was also the year I became involved with the Lyme Disease Challenge. That was the year I wrote many articles about PANDAS, PANS and Lyme. That was the year I continued to connect with others and to learn from these new communities. That was the year I understood on a deeper level the pain my kids endured. And that was the year, like all the other years, that I rubbed my child’s back until they fell asleep.

I have learned multiple lessons from these worst years
  • A truly horrendous year does not mean that I am immune from more horrendous years. There’s no such thing as paying my dues. Life does not owe me a good year.
  • Get it all out. Write. Cry. Weep over your laptop, sob beneath your sunglasses in the parking lot of supermarket, pound your pillows. Bicycle or run as hard as you can.
  • Then, do something for someone else. Get out of yourself. Text a friend to check up on them. Sign up to advocate for Lyme, PANS, or anything else that needs your support.
  • Connect. My husband and I have been cycling through this year. We have close friends who bicycle with us. I have a friend with whom I walk (socially distanced). I text with my colleagues, my cousins, my siblings. I’m not usually a fan of Zoom gatherings as I spend all day on Google Meets with my own students. Get on social media and respond with positivity and inspiration to someone else’s cry for help.
  • Avoid social media except when you’re using it for a calculated reason–for me, that means joining writing groups, teaching groups and Lyme, PANS groups. But avoid negativity and posts that show off on FakeBook. It hurts to see kids achieving and fancy famiy vacations (not this year!) when we hang out in the jungle of medical mishigas [craziness].
  • Set new goals. Maybe going to college directly from high school–with high honors–isn’t the path for everyone. Maybe the fact that my kid is willing to continue undergoing medical treatment is worthy of an award. Maybe getting through each day and smiling at a cashier is an achievement.
  • Recognize character. There is much love, caring, resilience and perseverance among the parents in the PANS and Lyme support groups. We are on both sides of the street politically, yet we come together in our quest to save our children. As an adult, it is astonishing to see the strength of the love of so many parents.
  • Exercise! Now this can be a hard one if you’re physically incapacitated or have young children or kids who cannot be left alone. When my husband was very ill, we got him an “under desk pedal exerciser.” Do ANYTHING! At my sickest, which wasn’t as sick as some who suffer from Lyme, I could manage only 14 miles on my bicycle, and that was with energy gels. I’d have to rest the day after. I’d have to rest after showering. Now exercise is my mindfulness activity; it’s one of my keys to mental health.
  • Stay balanced. This one is hard. I’ve been trying to step back from the decisions that my teenagers make, since I have no control, focusing instead on presenting data and options and, lastly, bringing my focus back to myself and what I actually can do. I don’t have much control over my teens. I can show love. And impatience, sometimes. I can guide. I can teach through example. I can be my most-fulfilled self.
  • Practice gratitude. I am thankful for our doctors, for certain individuals at the schools who have been extremely responsive and helpful. I am so grateful for my husband. And my doggies. Friends, both in and out of the PANDAS/LYME world. My bicycle. My computer. My hands, which now have arthritis from Lyme, but which still work for me. My legs, which are strong. My brain, which is back after floating with unicorns for a short while. And I’m grateful that my kids continue to fight and have turned into warm, creative people who can express themselves.

2020…

2020 is the year that I have bicycled more than 3,000 miles. It is the year that my oldest takes his disease seriously and pushes forward with treatment, submitting himself to monthly IVIGs that give him nausea and headaches. 2020 is the year that I am totally in love with my husband of 22 years, the year that my dogs are always happy to see me (that’s every year), my daughter becomes a social media genius who helps my son’s band get 100,000 views in one week.

My goal has been to reach beyond the trappings of PANS and Lyme–and now COVID-19 also–and find my life again. I’m out there, cycling, straight through frigid winter months as long as the ground isn’t coated in ice. I’m working on my writing, my novels, my dreams.

2020 is NOT my worst year, but I am forever changed by the worst years I have survived.

Lisa Kilion lives in New York. This post was originally published on her blog PANS Life.

Related Posts:
  1. Letter to grandparents of a child with PANS/PANDAS
  2. COVID-19’s daunting challenges for families with Lyme and PANS/PANDAS
  3. TOUCHED BY LYME: 20-year-old’s advice to her 14-year-old self: “You gotta have hope”
  4. Why therapy isn’t enough when you have OCD and PANS/PANDAS

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For more:  https://madisonarealymesupportgroup.com/2020/07/25/what-is-pans-pandas-and-why-are-cases-on-the-rise/

Category:

Lyme, PANS, Psychological Aspects, vaccines

Brain Fog in COVID-19 & Lyme Disease Patients

https://danielcameronmd.com/covid-19-brain-fog/

BRAIN FOG IN COVID-19 AND LYME DISEASE PATIENTS

man with COVID-19 and brain fog

COVID-19 patients report having brain fog, as do patients with Lyme disease. Brain fog can be a common symptom following an infection, Marie Grill, a neurologist at the Mayo Clinic tells Wired magazine. There are several theories regarding the cause of brain fog, including immune dysfunction, a reaction to a cocktail of medications, changes in blood flow to the brain, and post-traumatic stress.

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Lyme disease patients often describe suffering from brain fog. So do COVID-19 patients. Sara Harrison wrote about COVID-19 brain fog in the online journal Wired.

What are examples of COVID-19 brain fog?

Dr. Aluko Hope from Montefiore Hospital in New York City described what he has learned from listening to COVID-19 patients. “About a third of his patients say they can’t recall telephone numbers they used to know, or that they struggle to remember the right word, feeling like it’s on the tip of their tongue but just out of reach. They can’t remember where their keys are, what basic traffic rules are.”

Dr. Adam Kaplan, a neuropsychiatrist at Johns Hopkins University, adds “This mental fuzziness, often referred to as ‘brain fog,’ has become one of a number of reported COVID-19 recovery symptoms.”

“They say their brains work more slowly,” explains Kaplan. “They can’t pick up information in conversation as easily as they used to, and they struggle with short-term memory: They’ll walk to the kitchen, for instance, and forget what they were looking for. Multitasking is impossible. It takes them longer to get things done, and they often feel confused and overwhelmed. Some patients struggle to return to work or to school.”

What are the causes of COVID-19 brain fog?

The causes of brain fog in COVID-19 have yet to be identified. But scientists believe contributing factors may include nerve damage, anxiety, depression, post-traumatic stress, changes in blood flow to the brain, or effects from a cocktail of drugs used to sedate patients while ventilated. However, brain fog occurs in patients who have not been hospitalized.

Another explanation focuses on the body’s immune response to the virus. “Something about that activation of the immune system is potentially causing worse cognitive function,” says Joanna Hellmuth, a neurologist at the UC San Francisco Memory and Aging Center. “It might be that prolonged immune activation after COVID is creating these cognitive changes.”

Brain fog often follows infections

“We do have experience with this,” says Marie Grill, a neurologist at the Mayo Clinic, as she points out that brain fog often follows other infections like Lyme disease, Epstein-Barr (better known as “mono”), and other types of herpes viruses. “A lot of us are not surprised at all to be encountering this, because we have seen it so many times.”

What is the future for individuals with COVID-19 brain fog?

”Scientists don’t know how long these cognitive changes will last in COVID-19 patients, nor if they will have a lasting effect on brain function,” says Hellmuth.

How can doctors tell the difference between COVID-19 fog and Lyme fog?

The article in Wired did not address this all-important question.

Related Articles:

Changes in smell can be a sign of COVID-19 and Lyme disease

COVID-19 long-haulers and Lyme disease patients share similar frustrations

Don’t forget about Lyme disease in COVID-19 pandemic

References:
  1. Sara Harrison. Confused About Covid Brain Fog? Doctors Have Questions, Too. Wired. November 6, 2020. https://www.wired.com/story/confused-about-covid-brain-fog-doctors-have-questions-too/

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For more:

Category:

Lyme, Psychological Aspects, Viruses