When life with Lyme brings more questions than answers
This is one of a series of guest blogs by people who have enrolled in MyLymeData.
by Catherine Fox
Five years ago, I was enjoying fulfilling full-time work and a busy lifestyle when I began to notice I was unusually tired. Bothersome pain came and went in some of my joints. And I wondered,
• Is this this what it’s like turning 50?
• Isn’t it early to be getting arthritis in my left foot and both knees?
Then, on a vacation to Paris, the exhaustion deepened and an overall sickly feeling hit me. Jetlag, I figured, pushing myself along as my partner and I explored the City of Lights.
But the sick feeling just wouldn’t quit. Back home, my health entered a crazy roller-coaster phase, up and down but increasingly down.
As I crept to the offices of a rheumatologist and a neurologist, I assumed that relief was right around the corner, and that they could explain and treat the incredible pain and other symptoms becoming more intense every day.
In the end, blood tests and a spinal tap offered no clues. Sticking needles into my legs provided no answers to my severe muscle weakness, ruling out MS.
A brain scan ruled out “brain tumor” on the list of possible causes for my central nervous system issues. A couple of small lesions were normal for my age, they said. I wondered,
I’d been bitten by a tick and had a rash and flu-like symptoms some months before. My primary care provider had stopped antibiotics when my blood test came back negative. Yet as more testing ruled out more things, I wondered,
• Why did the doctors agree I did not have Lyme, yet they couldn’t find anything else wrong with me?
When I told the neurologist I was thinking about seeing about a doctor I’d heard was treating Lyme patients with success, he shook his head vigorously.
“No, no,” he said. “Those people are Lyme crazies, stay away from them!” Another question:
• Why was he labeling other doctors in such an insulting way when they were helping patients get better?
I said to him, “With all due respect, since you can’t find anything wrong with me…
• …where can I go next for help? Mayo? Johns Hopkins?”
“See a psychiatrist,” he said.
Despite all this naysaying by lauded doctors, my gut told me that the tick bite had started this downhill slide.
But the more I read on the web, the more questions I had. There were conflicting answers. Or no answers at all.
• How come the nurse practitioner I’d trusted with my health for 18 years had stopped my antibiotics despite my tick, rash, and other symptoms of Lyme disease?
• Why didn’t a single one of these health experts know that Lyme testing is not reliable?
• How does one find a doctor who does know about diseases transmitted by ticks?
• Why in the world would the Infectious Disease Society of America (IDSA) say Lyme infection is cured by two weeks of antibiotics, while the International Lyme and Associated Diseases Society (ILADS) says Lyme can be chronic and can be successfully treated with long-term antibiotics?
And, of course,
• Why the hell am I on my own trying to figure out my health crisis when I’m so sick I can barely walk or even hold my head up?
Next I sought out the best local infectious disease doctor, who treated me with oral antibiotics, then with a month of IV antibiotics, based on my symptoms.
The latter gave me some improvement, yet he wouldn’t go any further with treatment. That’s when I became aware that many doctors going beyond the IDSA guidelines of two weeks were being persecuted and prosecuted by medical boards. It seems insane.
• How could doctors be losing their licenses for helping suffering people who have found no help elsewhere?
By the time I reached the Lyme Literate doctor (LLMD) who would diagnose and help me, I was disabled by more than a dozen symptoms, including overall body pain, joint pain, fatigue, and severe cognitive impairment.
I wept when I realized I was finally sitting in front of a doctor who was listening to me with compassion, a doctor who believed me and said he could help me get better.
By this time I was housebound and often bedridden. Treatment was tough. I was shocked by the isolation, the lack of support. Which brought up more questions.
• Why aren’t there Lyme centers like cancer centers, where I could go for everything from pain management to counseling to physical therapy?
• Why don’t pain meds help me with the staggering 24/7 pain?
• Why is it that even a Lyme Literate doctor (LLMD) couldn’t answer questions that seemed so basic, like how long it would take me to feel better?
I am certain that long-term antibiotic treatment saved my life, and I’m so much better than I was, if still disabled. Nonetheless, I’ve still got a long list of questions.
• Will I get to remission and get my life back completely?
• Just how many people have chronic Lyme in the US and around the globe?
• Why do doctors insist there’s no Lyme in many places—despite the fact that many patients report becoming infected?
• How many are misdiagnosed with other illnesses when they’ve been infected by a tick bite and could be getting better with proper treatment?
• Why do some infected people get sicker than others?
• What’s the best treatment for other dangerous illnesses caused by ticks like Babesia and Bartonella?
• Why isn’t there one treatment protocol that works for everyone?
• How can many insurance companies get away with denying coverage for Lyme treatment?
And, one of the most fundamental questions of all,
• How can the Infectious Disease Society of America (IDSA), which holds sway as the authority on infectious disease for not just the U.S. but for many health care providers and decision makers around the world, continue to say infection does not continue after short-term antibiotic treatment?
Lymedisease.org president Lorraine Johnson notes that LDo’s new research project MyLymeData is the chance for thousands of patients to pool their data to help further the cause of Lyme disease research.
What a fantastic opportunity! I hope hundreds of thousands of people like me will share their information. MyLymeData will only be as good as patients choose to make it.
Researchers can’t research without data, and funding is sorely lacking when it comes to Lyme research.
So a big question of the moment is,
• How many of us will take a little time to give the unique treatment experiences and testing results that only we can offer?
To do my part in finding a cure, I’ve started to share my tests with the project. It’s significant new efforts like this study that give me confidence.
Despite the naysayers, I’m going to have those answers I’ve been seeking. Those answers we’ve all be desperately seeking that will bring a cure and stop the suffering.
Click here for more information about MyLymeData.
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Sidelined for the past five years with Lyme, freelance writer Catherine Clarke Fox blogs about her experiences at LifeLoveLyme.com. Splitting her time between Virginia and Maryland on the Chesapeake Bay, she says she’s healing thanks to antibiotic treatment and the restful peace she finds in the blissfully tick-free environment aboard sailboats.
catherine, what a remarkable writer you are! i loved reading your story, and thank you for wonderful short 1-2 sentence paragraphs for us neuro cognitive patients.
what a good role model you are and what a beautiful photo of you 😉 best wishes, hugs/prayers,
bettyg, iowa lyme activist
Criminal medical estabishment!!! Same story over, and over, and over, and over. No help, left on your own, sent to a psychiatrist when very sick. Unacceptable!!!
How can the IDSA do that you ask? Power. They managed to have the Lyme film Under Our Skin pulled from airing on PBS just days before it was scheduled to air. What a shame.
I believe I have a pretty good answer to many of your questions. Having spent the last 30 years in a state of relapsing/remitting disease. The inciting factor? Antibiotics. Yes, I have had the entire litany of lyme symptoms throughout the past 30 years. I began my search of answers in the mid 90’s when there really wasn’t an internet to turn to. After about 3 years of battling debilitating mental fog, I finally hit on something that helped, fasting. Why did the brain fog start within minutes of eating? Why could I keep it at bay by fasting? My normal body weight is around 215 and I was 175. I was a scarecrow in a 6’2″ body because I’d rather not eat than suffer with brain fog. I was in my early 20’s and the world was supposed to be in front of me, but instead I was battling a phantom and all my money and energy went into finding out what was wrong with me. Life was on hold. Nobody could see what was wrong with me. It wasn’t a rash. My brain wasn’t leaking out of my ears. I tried to explain it to those closest to me, but they just couldn’t relate. I was alone. I’ve had every test you can imagine. I’ve had multiple MRIs, CAT scans, neurological exams, and blood tests (including lyme IGENX) all of them inconclusive. Now what follows is MY opinion, take it as you will, but remember, I’ve got 30 years of experience with this, that makes me somewhat of an expert. As a long-time sufferer, I easily could be clinically diagnosed with Lyme disease. What I believe is that it is not the Lyme bacteria per se, that causes this chronic state of debilitating disease, but the wipeout and subsequent infestation of unhealthy gut flora AND the migration of that flora to the small intestine AND the resultant dysbiosis and leaky gut. The reason that long term antibiotic therapy “works” is because it wipes out all the harmful AND beneficial bacterial at once. As long as you stay on the antibiotics, you feel better. Not because your are treating antibiotic resistant lyme bacteria, but because you are eliminating the host of pathogenic bacteria that has taken over your gut. One of the reasons many of us feel better on a Paleolithic diet is because we are starving the unhealthy bacteria in our guts. The less they eat, the less toxins THEY produce. Die-off, the death of these pathogenic bacteria, causes its own set of problems and is likely the cause of the flulike symptoms many report when starting a fast or low-carb diet. We are born with our gut bacteria, it is transferred to us by our mother and to a small degree, our father. The reason we are getting sicker and sicker in this country and are markedly more prone to these difficult to diagnose/treat diseases, is because we inherited poor gut bacteria from our parents, who were some of the first people to be treated and/or born with compromised gut bacteria. The baby boomers are the children of the first antibiotic users the world has ever known and as antibiotic use has increased, so has the incidence of autoimmune mediated diseases. Ironically, the very cure you are seeking may be the ultimate cause of your illness. It’s a bitter pill to swallow. We want the solution to be easy. Take a pill, feel better. Unfortunately that’s what got us here in the first place. There is, however, a lot of promise in gut bacterial transplantation and what I think western medicine is on the cusp of, is realizing that wide-spectrum antibiotics do have serious side-effects and the new therapy will be fixing the problems that antibiotic use has created.
Hi Joshua,
Thanks for the comment. I agree with you that those of us who have been on a quest for answers for years and years, doing research and going to all kinds of health care folks should certainly have some pretty good insight into what’s going on with our own bodies, what helps, what doesn’t and why.
I had my first acute Lyme symptoms 56 years ago. I was finally diagnosed with Lyme in 2015. I know that I have had subsequent exposures to Lyme.
Over the years, I was diagnosed with all sorts of things from Lupus to MS to Fibromyalgia and a dozen or more other auto-immune-type diseases or syndromes. Each one of these I extensively researched, to come to the conclusion that none of them were primary, but just symptoms with unknown causation. Until it came to Lyme. Finally an actual disease with a cause and a list of symptoms that covered all the other diagnoses.
All of the research does pay off in a better understanding of how our bodies work and a better understanding of cause and effect in our own bodies. That’s very helpful!
I have found that intermittent fasting, rotating foods, and eating fresh, organic vegetables, grass-fed meats, and very few sprouted whole-grains, and no sugar, restaurant foods, processed, or refined foods. I also agree with your thinking on the gut health being key to healing. I eat sprouted nuts, seeds and grains and culture or ferment a number of raw vegetables, and this goes a long way to keeping my gut as good as it can be.
One big thing that I discovered is that my gut goes crazy if I take any pill or capsule containing a stearate. Almost all over-the-counter and Pharmaceutical drugs contain them, and it’s often next to impossible sometimes to find out whether they are in the drug or not. It took several years for me to heal my gut from this, but now it’s much better.
I apologize for how much I’ve written. When I began I didn’t intend to write so much. Just want you to know that I think you’re on the right track and that we can’t always depend on others for answers or to fix things for us. If you’ve been paying attention to yourself, no one knows more than you about what’s going on and what’s happening (and happened) to you. Keep paying attention and using your intuition.
I wish you well!
I cried when reading your story. I have dealt with same thing for almost 20 years. I’m 51 now and and have had times of relief. Through homeopathic remedies I was able to feel good not perfect but enjoy life once in awhile. Now I’m experiencing neurological problems. Don’t know where to turn. Doctors are so uninformed about Lyme disease. I’m just gonna keep doing what I’m doing. Try to enjoy life the best way I can
There are so many questions from the people that have been diagnosed with Lyme disease myself included I wonder if we will ever find the answers we are all looking for. I had a month of antibiotics and at my primary doctors follow up visit was told we have a test to see if you have it but not to see if your cured. Very frustrating as I continue to have joint paint and fatigue issues which I seem to have noticed more of since being diagnosed.Am I supposed to just trust the drs with well we think your cured but what is causing all these other issues,is it my age or is it leftover symptoms from Lyme disease
If you continue to have symptoms, we suggest you be evaluated by an ILADS-affiliated doctor. Have you ever been evaluated for co-infections (other nasty stuff that can be transmitted in the same tick bite that gave you Lyme)?