Ally Hilfiger shares her experiences at Focus on Lyme 2017
LymeDisease.org
Ally Hilfiger, daughter of famous fashion designer Tommy Hilfiger, has struggled with Lyme disease since childhood. We included an excerpt of her book “Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me” in our Fall 2016 Lyme Times issue. To take a look, click here: https://www.lymedisease.org/members/l…
After reading one of the most intense chapters of my upcoming memoir—about the downward spiral that led to my April 2007 relapse—a fellow writer said to me,
“I see a lot of post traumatic growth emerging here.”
I looked at her quizzically. Post traumatic growth? Didn’t she mean post traumatic stress? That period was one of the most traumatic of my life, and even ten years out, I still get some traditional PTSD symptoms every April: flashbacks, nightmares, anxiety, increased concern that the relapse could happen again. Surely, reading about the initial trauma itself, this writer was talking about the post-traumatic stress that would emerge in the years following the relapse.
But I had heard her correctly. She meant post traumatic growth as she saw it reflected in my writing, especially the parts where I used an older, wiser voice to look back on the difficult event and draw lessons from it. My friend, an Air Force veteran who writes about her deployment to Afghanistan, is familiar with both trauma and reflection.
She’s also familiar with post traumatic growth, a concept that is being used to help veterans not just bounce back after experiencing trauma, but grow from it and change their lives for the better. Developed in 1996 by psychologists Richard Tedeschi and Lawrence Calhoun, the theory holds that “people who endure psychological struggle following adversity can often see positive growth afterward.” As Tedeschi explained in an interview for the American Psychological Association, “people develop new understandings of themselves, the world they live in, how to relate to other people, the kind of future they might have and a better understanding of how to live life.”[1]
These were exactly the kind of changes I experienced after surviving my relapse. Until that point, I’d always talked about “getting back to life” after Lyme disease. It wasn’t until I went back to ground zero that I realized it wasn’t about going back; it was about moving forward in spite of Lyme. Tick-borne illnesses were coming with me, and I had to figure out a way to neutralize them as best I could their impact on my future.
I’ve always considered myself a resilient person, but post traumatic growth is about more than just resilience. As explained in a March 2016 article in The New Yorker article titled “Can Trauma Help You Grow?”, “Psychologists have long studied resilience—the ability to bounce back and move on. But post traumatic growth, which has been documented in hundreds of studies, is different; it’s (more about) what happens when trauma changes and deepens life’s meaning.”[2]
Of course, this growth takes time. For me, it took many conversations with my doctor, my therapist, my family and my friends. It’s taken 10 years for me to fully recognize and appreciate the ways Lyme has changed me for the better, such that I can reflect upon those changes in writing.
To chart post traumatic growth, Tedeschi and Calhoun look for positive responses in five areas: appreciation of life; relationships with others; new possibilities in life; personal strength; and spiritual change. I can now attest to positive changes in all of those areas, but I certainly could not have done so in the past when I was stuck in bed, unable to think about anything beyond migraines and joint pains, suffering hallucinogenic dreams only to wake into a living nightmare.
But the beauty of post-traumatic growth is, it’s not supposed to happen right away. In fact, it can’t happen unless you first come to some understanding of your trauma. And here’s the best part: Tedeschi asserts that post traumatic growth is far more common than post traumatic stress disorder.[3]
That’s an assertion I can also attest to. While I’ll likely always have some distress in April, and while I still get nervous about a relapse when my symptoms flare up, those periods are mere drops in the bucket of growth that I’ve amassed in the last decade. Lyme disease has changed me for the better, and I wouldn’t change that for anything. How’s that for irony?
Next week Jennifer will be answering your questions about Lyme disease. Have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com
[1] http://www.apa.org/monitor/2016/11/growth-trauma.aspx
[2] http://www.newyorker.com/tech/elements/can-trauma-help-you-grow
[3] http://www.nytimes.com/2012/03/25/magazine/post-traumatic-stresss-surprisingly-positive-flip-side.html?_r=1
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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**Comment**
Great read. Seriously. Great read.
We can’t change the fact we’ve been infected but we can, over time, change how we react to it.
http://www.nbcnewyork.com/on-air/as-seen-on/Part-II-Child-Makes-Recovery-After-Chronic-Lyme_New-York-452896893.html(News video here) Published on Oct 24, 2017
Kyra Lerner tells her story of struggle and recovery after contracting chronic Lyme, a controversial diagnosis linked to Lyme disease-carrying ticks. Kyra’s story is the second in our five-part investigative series. Natalie Pasquarella reports.
For more: https://madisonarealymesupportgroup.com/2017/10/24/lyme-wars-part-1-julias-story/
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**Comment**
Lots of great info presented in this story – particularly the polarization of medicine and the fact that if Kyra’s parents would have followed the paradigm of the Infectious Diseases Society of America (IDSA), where they espouse essentially 21 days of doxycycline to be curative in all cases, she would be sicker than a dog with no hope. Thankfully, she and thousands of others have followed the paradigm of the International Lyme and Associated Diseases Society (ILADS) who believe Lyme is pleomorphic and persistent, requiring much more than 21 days of doxycycline as well as the fact there is often coinfection involvement, requiring different drugs for far longer than a month. This group also believes that IV treatments can be quite helpful for a subset of patients despite the government’s recent attempt to stop IV therapy for Lyme/MSIDS: https://madisonarealymesupportgroup.com/2017/06/21/ilads-rebuttal-to-mmwr-article/
For a great article explaining the tug of war: TheCaseforthePersistenceofLymeDiseaseAfterAntibioticTherapy The truth is that over 50% of the IDSA’s guidelines are based on “expert opinion” rather than “evidence-based medicine” as their publication suggests. A further 31% of the IDSA guidelines are based on observational studies. Only a meagre 29% of the IDSA Guidelines fit into “evidence-based medicine”.(22,23,24,25,27) Importantly, the IDSA’s own research supports these very findings.(22
Please understand for those of you just tuning in – THIS IS A WAR of epic proportions.
The reason we find ourselves here even 40 years after Lyme was “officially” discovered is due to money, power, and collusion at the highest level of government. The government holds the patents on Borrelia burgdorferi (Bb), Lyme testing, the Lyme vaccine, and has been controlling the narrative for decades, even taking specific bands out of Lyme testing that show infection due to their patent on the Lyme vaccine.
https://www.google.com/patents/US8680236 Gov. patent on OspA (outer surface protein) of Borrelia Burgdorferi (Bb).
https://www.google.com/patents/US6087097 Gov. patent on Lyme test based on OspA (outer surface protein) which causes the same disease it was meant to prevent which is the real reason it was yanked from the market.
https://www.google.com/patents/US4721617 Gov. patent on Lyme Vaccine
https://crymedisease.wordpress.com/2016/02/28/the-conspirators-they-own-the-patents-and-changed-the-testing/ A lengthy expose on all shenanigans for the stout of heart.
Please, don’t allow yourself to be fooled. The powers that be have been controlling research and the narrative on Tick borne illness from the start. Nothing about this is new. It’s as old as the hills. In fact, one researcher has filed an anti-trust law-suit due to government suppression of a more accurate and cheaper Lyme test: https://madisonarealymesupportgroup.com/2017/09/25/speaking-of-fake-science-fifty-seven-million-anti-trust-lawsuit-against-cdc-lyme-tests/
This same researcher and others have also complained of how the CDC is controlling the research being done: https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/. This article explains how they do it on a practical level: https://madisonarealymesupportgroup.com/2017/01/02/fake-science/
So while I’m extremely happy for these news stories, this abusive treatment of Lyme/MSIDS patients and the doctors who dare to treat them has been going on since it was formally given a name in the 80’s.
http://www.nbcnewyork.com/on-air/as-seen-on/LYME-WARS-1508783640861_New-York-452543463.html Published Oct. 23, 2017 (Click on link for video)
The Lyme Wars
This powerful segment gives three Lyme/MSIDS patient stories.
Julia, is still wheelchair bound after presenting with the tell-tale bullseye rash. Her arms and legs went numb at school. She’s seen 60-70 specialists but tested negative for Lyme. Her greatest advocate is her dad who became an internet researcher to figure it out.
Kyra, didn’t have the normally thought of symptoms – just horrible anxiety, depression, and hopelessness. Her doctor knows Lyme is the great imitator and suspected it despite a negative test. She tested positive for Ehrlichia, which implies contact with a tick. Due to the Lyme/MSIDS diagnosis Kyra went from blaming herself to understanding she now had something she could fight. After doxycycline they chose IV Rocephin – and Kyra became herself again. “The feeling of actually starting to recognize pieces of what I was before was such an amazing feeling.”
David, felt pretty good after 30 days of antibiotics but after researching on the internet and understanding the probability of coinfection involvement and some persisting symptoms, he wanted a Lyme literate doctor (LLMD) to appraise his case. He handles his symptoms by avoiding carbs, alcohol, and doing homeopathy. David says there might be 7 deer on his lawn on any given day, so he bought the Japanese Barberry plant to thwart them; however, research has shown the plants harbor ticks and mice. David states you have to be your own advocate, that every case presents differently, and that you have to do your own research but not drive yourself crazy, remembering that someday the sun is going to rise and you are going to feel better.
For more facts and info: NBCNEWYORK.CO/LYME
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**Comment**
Excellent, excellent story with wonderful information. If you do a tally, two of the three tested negative (David didn’t say) – which is very common. Patients so desperately want that positive test but they must understand testing for tick borne illness (any of the pathogens) misses half of all cases. There is a small window in which the test even works and even then some people never mount an appropriate immune response.
More on testing: https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
Finally, after 40 years of suffering, even the CDC is stating to treat if TBI’s are suspected: https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/
Please know an EM rash IS LYME DISEASE. No testing required! According to ILADS you need medication for 3-4 weeks and NOW! https://madisonarealymesupportgroup.com/2017/03/24/one-pill-of-doxy-only-reduces-prevalence-of-rash-not-lyme-disease/
Dr. Elena Frid has excellent advice on things for parents to look for: https://madisonarealymesupportgroup.com/2017/09/19/three-things-for-parents-to-watch-for-regarding-tbis/
When Lyme isn’t caught early: https://madisonarealymesupportgroup.com/2017/09/05/when-lyme-isnt-caught-early/
Kyra‘s sudden mental changes are key symptoms that need to be acknowledged. If your child suddenly has drastic mood changes, please consider TBI’s as well as PANDAS/PANS: https://madisonarealymesupportgroup.com/2017/10/09/today-is-panspandas-awareness-day/
Recently, the CDC came out with a damning report based on 5 patients who had adverse outcomes after IV treatment. Please understand that thousands of Lyme/MSIDS patients’ lives have been saved using IV treatment – Kyra’s included. For more: https://madisonarealymesupportgroup.com/2017/09/08/another-lyme-patient-benefits-from-iv-treatment/ What’s important to remember is many of these pathogens can infect the brain, requiring drugs that cross the blood, brain, barrier. You can throw doxy like napalm until you are blue in the face but it will not eradicate organisms in some. There is a concern of doxy throwing the spirochete into a non cell wall form to lurk until later – perhaps causing or exacerbating Alzheimer’s and dementia: https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/
More on psychiatric Lyme: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/
David rightly warns of coinfections as research has shown Lyme rarely comes alone: https://madisonarealymesupportgroup.com/2017/07/01/one-tick-bite-could-put-you-at-risk-for-at-least-6-different-diseases/
Japanese Barberry: https://madisonarealymesupportgroup.com/2015/09/30/barberry-friend-or-foe/
https://www.linkedin.com/pulse/corruption-lyme-caucus-jenna-luche-thayer/
CORRUPTION in the Lyme Caucus?
Published on Published on October 16, 2017
Jenna Luche-Thayer
jennaluche@gmail.com
Friends,
I recently posted an article expressing concerns about the representation and motivation of those making up the Lyme Caucus – see Does the Congressional Lyme Caucus Represent You?
I then shared an analysis of the voting record of the Caucus members regarding health care coverage for those with chronic illness – including those with persistent and complicated Lyme.
As noted, “SIX members of the Lyme Caucus DO NOT support current protections for insurance coverage for those with chronic illness, including those with chronic Lyme. They are: Lou Barletta (PA-11), John Faso (NY-19), Tom Marino (PA-10), Bill Posey (FL-8), Tom Reed (NY-23) and Glenn Thompson (PA-5)”
On October 15, 2017, investigative journalists reported that Tom Marino has been fully implicated in driving and passing legislation that makes it virtually impossible for the Drug Enforcement Agency (DEA) to persecute pharma or the doctors that promote pain pills [1].
The opioid epidemic is increasing every year. In the USA, 64,000 people died from drug overdoses in 2016 – most of these deaths were from opioids. Drug overdoses are now the leading cause of death among Americans under 50 [2].
These discoveries are linked directly to my analyses where I speak about the abuses inherent in the fraudulent Post Treatment Lyme Disease Syndrome (PTLDS). For example,
“CDC discrimination practices includes PTLDS. As noted, PTLDS is a condition that transforms a Lyme patient into a person who should be treated for MUS [hypochondria] rather than a systemic infection… Based on information from the CDC report Incidence of Clinician-Diagnosed Lyme Disease, United States, 2005–2010, and other sources, there are approximately 300,000 cases of Lyme per year. According to the CDC website, approximately twenty percent will fail to be cured [by the 2006 IDSA guidelines] and will be classified as having PTLDS [3].
Given these numbers, the CDC’s recommended treatments for PTLDS include exposing potentially 60,000 persons a year to the risk of painkiller [opioid] addiction. PTLDS -linked-MUS has the potential of erroneously adding 60,000 persons per year to the mental illness category. Therefore, since 2005 [until 2016], the CDC Lyme policy has created situations wherein 720,000 patients may be potentially misclassified as mentally ill and increased the risk of addiction to pain killers for as many as 720,000 people.”
So, not only has Marino voted against Lyme patients having access to covered medical care, he has also ensured an unregulated pain pill industry. Lyme Caucus member Marino has put Lyme patients into double jeopardy.
Why is Marino on the Lyme Caucus? Is it to ensure that 100s of thousands of undiagnosed, untreated and undertreated Lyme patients can be victimized by the hugely profitable and deadly opioid epidemic?
By the way, Trump has just named Marino to be his drug Czar. Looks like the fox is officially in the hen house.
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[1] See Washington Post ‘The Drug Industry’s Triumph Over the DEA’ by Scott Higham and Lenny Bernstein -10.15.2017.
[2] See New York Times ‘Drug Deaths in America Are Rising Faster Than Ever’ By Josh Katz – 6.5.2017.
[3] see webpage CDC Post-Treatment Lyme Disease Syndrome – under References, under Human research: Marques, A. Chronic Lyme disease: a review. Infect Dis Clin North Am 2008; 22:341–60. Accessed Oct. 15, 2017 – https://www.cdc.gov/lyme/postlds/index.html
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**Comment**
As you can see, we must be forever vigilant with all things legislative as they can and often backfire. Please contact and be in contact with your Representative to make sure their driving force on the Lyme Caucus is to help chronically ill people be recognized and properly treated.
Thayer knows that of which she speaks: https://madisonarealymesupportgroup.com/2017/09/16/lyme-and-the-opioid-crisis-dr-bransfield/
https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/ Besides suicides, Bransfield estimates around 14,000 incidents of self-harm and 31,000 suicide attempts may be attributed to Lyme and associated diseases each year. https://www.usatoday.com/story/news/nation-now/2017/07/19/how-lyme-disease-might-triggering-hundreds-suicides/493934001/ “It’s a constant action that comes up and isn’t adequately addressed in the scientific literature,” Bransfield said. “… Failure to adequately diagnose, failure to adequately treat and the progression of the disease over a span of many years often leads to suicide.”
Bransfield also points out that in his experience: Suicidality seen in LAD contributes to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms which are possibly intensified by negative attitudes about LAD from others.
Negative attitudes about LAD abound due to the top down handling of of it. When those who are supposed to be protecting public heath and who also control the narrative used by treating physicians state you are clearly crazy and NOT sick, the trickle down theory effectively labels you as a nut-job more needing of a psych med or pain killer than life-saving antimicrobials.
There is a problem and it’s not in Houston – it’s within in the CDC.
For more on the Lyme Caucus: https://madisonarealymesupportgroup.com/2017/09/22/calling-all-wisconsinites/
Madison Area Lyme Support Group 