TOUCHED BY LYME: (guest blog) When Lyme shatters your family
Tom Feldman, whose daughter became seriously ill at a young age, discusses his family's harrowing journey through Lyme disease.
When our daughter Silver became suddenly and mysteriously ill, we had no idea what we were dealing with and I was shocked to find that neither did the many, many doctors we consulted. For more than eight months we were given many diagnoses – all of which were wrong. One ER doctor said, “your daughter has too many symptoms,” the not so subtle message being that she had “psychological” problems.
The head of pediatric infectious diseases at our HMO showed little concern or empathy. Instead of acknowledging our daughter’s serious symptoms, he accused us of being “overly concerned.” (At the time she had an intractable 24/7 headache, cognitive issues, a page full of symptoms, was rarely attending school, had periodic difficulty walking, experienced bouts of uncontrollable tremors, and he accused us of being OVERLY CONCERNED?)
Lyme disease utterly upset the homeostasis of our family system. Six months into this illness, we had to take her out of school because she was too sick to do the work. An accurate diagnosis took nine months, tens of thousands of dollars and a trip across the US.
We found ourselves in a netherworld– those who “should” have been helping us were of little or no use, sometimes actively opposing us. We were now caring for our daughter 24 hours a day, battling the school system to qualify for “home instruction,” and battling our HMO to get appropriate and necessary treatment. We were isolated and lonely.
Between going to doctors, searching for a diagnosis, taking care of our daughter and giving her treatments, we had little time or energy for anything else. Our personal lives and professional goals had to be put on hold.
Financially, we cancelled everything we could, stopped eating out, going to movies, and buying anything non-essential. We drove less. We did whatever we could think of to conserve our finances.
We needed more money and yet we had to accept less work (we’re freelancers). We refinanced our home, which scuttled the retirement conversation. We staggered our work schedules and turned down work so that one of us could always be a caretaker.
We encouraged each other as we strove to keep our world from imploding. We played card and board games, watched classic movies, read out loud, cooked together, took occasional short walks. Thus emerged a “new normal.”
Once we had a diagnosis, it was clear that our daughter had been a poster child for Lyme disease. Why did so many doctors and medical professionals miss this disease while looking right at it? And why was it that the doctors who missed the diagnosis would not be interested in finding out what had been going on?
After diagnosis, our daughter did oral antibiotics, and we supplemented them over time with acupuncturists, homeopaths, nutritionists, hyperbaric oxygen treatments, rife, ozone steam , high-powered magnetic pulsers, light therapy, chiropractors, and more. Finally, we got her on IV ceftriaxone which made an immediate and profound difference: in 3-4 weeks (and after a major Herx) she went from being unable to leave the house on her own to being able to drive, work part time, pursue a relationship, and take classes, even if she had not fully recovered. She got her life back!
As her condition improved, we helped our daughter with her schoolwork and she graduated from high school. I taught her to cook, and she’s written and published two cookbooks. Her Mom taught her a profession. She’s taken design classes, and has had a full-time job as a graphic artist for nearly a year. She has a healthy relationship. She has been doing alternative treatments that have taken her remaining symptoms down to nearly zero. But nothing about any of this was easy! All of us have slowly learned to make lemonade out of the lemons in our lives.
We have utterly changed the way we see life. Little things that used to bother us or cause upsets now pass with no mention. We have developed new healthy friendships, some of them in the Lyme community, that have come to mean a great deal to us. Our family is intact and very close. We have a new understanding of the important things in life: living into our calling, health, relationships and community.
I’m suggesting that, as best you can — rather than turning inward, seek ways to turn outward and get involved, even small ones. Participation in life is healing to the soul. Reach out and be in communication with others. Take baby steps. Pick something that gives you joy and pursue it.
An ill person is at a disadvantage: having less energy, having to manage severe pain, symptoms, and treatments. These are time consuming and exhausting. Fun may not show up on Life’s Menu very often, but don’t give up. Embrace your life as it is. Become the biggest person you can be. Give up being small. Forego the lower emotions: fear, anger, envy, resentment, victimization, etc., and embrace the higher emotions: love, kindness, generosity, peace, and compassion. YOU are not sick! Your BODY is sick. Do everything you can to get well and be pain free and become the best you that you can be. Be bold! Become the hero of your own life.
(Excerpted and updated from “When Lyme Shatters Your Family,” Lyme Times, Winter 2010/2011.)
——————————————
——————————————
About the author: Tom Feldman has been a professional in the entertainment business for many years, receiving a nomination as a Lighting Director and winning an Emmy award for his work as a Gaffer. He is a founding member of The Association of Transformational Leaders of Southern California, an Adjunct Professor in Communications at Woodbury University, and Board Chair of The Forge Institute, a national organization of spiritual leaders and teachers. He leads personal development workshops and is a lifecoach. (Tom@TomFeldman.com)
Tom’s wife, Beverly Feldman, maintains a Lyme awareness site: lymesucks.org.
The TOUCHED BY LYME blog is written by Dorothy Kupcha Leland, CALDA’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Been there. Thanks for putting it into words.
I feel your pain. I was diagnosed over 5 years ago, and I guess lucky that I had a positive test or 2. My daughter was diagnosed over 3 years ago, and evidently has had since birth, since I was sick when pregnant. We are both undergoing treatment now, but it's not been near enough. God bless
This is such a common story, that Lyme disease goes undiagnosed. Shouldn't the fact that it is missed so often make doctors on the lookout for it?
I was diagnosed ~ 3-4 months ago…this weekend was the worst Herx I have had over the past few months…the pain is so debilitating accompanied by a headache and nausea…not a Happy 4th of July
Deb, are you doing anything to detox from the herx? Some people find that lemon juice in water helps. (It affects the pH level of your body–acid/akaline balance.) Also, some people find that epsom salt baths can sooth some of their symptoms.
I diagnosed my husband and myself after seeing 14 drs. medical centers,etc. etc in 1990. I HAD 65 SYMPTOMS BUT ENDED UP IN A MENTAL WARD BECAUSE THE LOCAL DOCS THOUGHT THAT I WAS LOOKING FOR ATTENTION AND WAS A HYPOCHONDRIAC. I am the " Lanie" in the book COPING WITH LYME DISEASE BY DENISE LANG ON PAGE 59- " I'M NOT CRAZY-I HAVE LYME " . I WAS ON 6 MONTHS OF IV-ROCEPHIN AND MY HUSBAND WAS ON 42 DAYS OF SAME. WE NOW HAVE CHRONIC LYME WHICH OUR LOCAL DOCS DO NOT RECOGNIZE!!! I ATTEND ALL THE HEALTH FAIRS, HAVE GONE TO OUR STATE CAPITAL FOR LYME AWARENESS MONTH AND WRITE MANY, MANY LETTERS TO ALL OUR LOCAL NEWSPAPERS. PENNSYLVANIA LEADS THE NATION WITH THE MOST CASES OF LYME DISEASE AND ELK COUNTY( WHERE I LIVE ) AND CAMERON COUNTY LEAD THE STATE WITH THE MOST CASES FOR THE PAST 21 YEARS. I HAVE THE NORTH CENTRAL PENNA. LYME DISEASE SUPPORT & INFORMATION. YOLANDA WOLFEL 185 CENTER ST. APT 701 SAINT MARYS, PENNA. 15857 TEL 814-781-6332
The CDC will be back in Sacramento in September for their twice yearly conference. Is CALDA organizing for Lyme patients to attend or start promoting now the date for attendance at the CDC conference so that there is a presence for the media to take notice… even if its on the street with signs!!! There are enough lyme patients in CA that I would think that a significant amount could be there… or at least from the Santa Rosa area where approximately 400 showed up for a local lyme talk with Dr. B this past March.
I would love for thousands to show up with posters: "I am the face of Lyme." The public needs to be aware that this is a threat to everyone.. their kids, relatives… We need to take the disease out of obscurity and be "in their face". At the last CDC conference there was little presence of lyme patients. The blood supply is not screened which I brought up – their own doctor said babesia the coinfection has been transmitted via blood transfusion — yet the CDC consciously left that out of their notes of the conference. They also left out that their researchers told them that they don't know why yet, but females test with less bands positive than males. Why would they not warn docs of this possibility. Not to mention, the defective test – which is being redesigned by a researcher at the U. of FL as I write this. The CDC protocol that is costing thousands of lives every year… it cost me mine.
I hope that the lyme community will rise up and be present at the CDC conference in Sacramento in September. The gay community forced changes and got medical research for being the squeeky wheel. Lyme patients need to do the same for themselves if they can. The public needs to see lyme patients front and center – that we are not going away – and our numbers of infected grow every day — The general public need to take on this cause as their own too. This can happen to ANY ONE. When the public feels that alarm, I think it will make all the difference in funding and efforts to fast track treatments and freedom to treat.
Our numbers and having banners… at each CDC, government event will catch more media attention. This is something every lyme patient isn't stuck in bed with symptoms can do. We can have power in numbers out in public where decision makers can start to feel the pressure.
The conference is an opportunity to get media attention to the problem that is growing and at their back door too.
How can we organize a trip to Sacramento or get the dates out now? If people don't know about the conference, they won't be able to attend or make public comment. If we are not there, we become a shadow, not a force.
The last conference, the CDC website for public comment didn't work, so I complained & emailed contact and made public comment. When that e-site did not work, made it appear that there wasn't a concern. There were SO FEW there and only a handful of comments. We need to show a public presence so media covers these events, We need to show public some are losing their lives, livelihoods, and families over the stress of treatments not covered by insurance.
Can CALDA please start publishing the CDC conference date in September. Perhaps a bus trip to Sacramento can be organized from various regions.
Thanks & God bless. With more of our presence felt, perhaps the disease will become a "reality" for the rest of the public that currently think this can't happen to them. It is something the public needs to take on as their concern – their threat too. Our presence will help that by being in Sacramento at ground zero
I hope everyone will try to get there or get a family member or friend represent them there.
If there is enough people, the media WILL see all the sick persons in CA who have lost their lives as they knew it to this disease… We need the CDC to help us, not hurt us or stonewall us by staying in a position of antiquated – "the world is flat" mentality & protocols where their OWN researchers have told them of the recent 27 studies showing the infection continues!!! They are picking and choosing what to print of these conferences. AND NO ONE IS RECORDING THEM TO MAKE THEM HAVE ACCOUNTABILITY!. How many hundreds of thousands must become sick or die.
The only good thing that has come of Lyme for me is now I know who my REAL friends and family and loved ones are…. the imposters and users are gone! Let us be there for each other at this conference as a united family.
Please consider showing up in Sacramento Sept 2011 for the CDC bi-yearly lyme conference as a stong lyme family presence to help each other.
I hope CALDA will promote this event.
Unfortunately, this story is my story and thousands of other people’s stories. It is not uncommon when it comes to Lyme Disease. Thank you for sharing your family’s journey with us. It makes me feel not so small. It truly captures the fact that our medical community needs to wake the hell up!! My husband took me to see 23 plus doctors before we had the proper diagnosis. I had the classic bullseye rash. However, in Utah they stated there was nothing they could do for us and it was ALL IN MY HEAD. They literally told my husband I was having a nervous breakdown. Really??? How does one person go on a family vacation to return with a bullseye rash ,close to death and cannot get the proper care needed??? No!! Instead, I got told it was all mental issues. I was a female and under too much stress. What a joke!!! Enough is enough. We ate faced with a pandemic in this world right now. We are in trouble. 90% of our population has Lyme. Doctors need to get on board. It is coming out of the woodwork faster than you can say it. If you have ever been bite by a mosquito, spider, flea, mite ,tick , had sexual relations ,camped , traveled to other countries, been exposed to stray animals, spent time in the great outdoors, the list goes on and on……YOU COULD BE AT RISK FOR LYME. This is what people need to understand. Education and prevention are key with this illness. There is NO CURE. Remission is our greatest hope at the present time. One person can make a difference. My mission is to educate one person per day. If I can help one person, then just maybe I have saved one soul from this evil monster we call Lyme Disease.
My daughter was diagnosed in 2017…It is now 2018…Still no recognition from the CDC! Some of these posts date from 2011!! The CDC does not care about Lyme! The CDC cares more about Big Pharma! All of the money being spent by hard working Americans on Antibiotics and Supplements. Americans are being FLEECED and left to die!