My circuitous route to a Lyme diagnosis
By Jacquelyn Golan
Two years ago, if you had asked me to tell you about myself, it would have gone something like this: I am 30 years old. I co-own an event design company. I have a husband who is a successful songwriter and the love of my life. I have a pug named Peter who I adore. I like traveling to new places, trying new restaurants and hanging out with my friends and family. I just finished a six-month cooking course for fun. I love my life.
Worst Two Years Of My Life
Now, let me tell you about myself today. I am 32 years old. I have an incredible husband, loving friends and family who have stood by my side through the worst two years of my life. I am not able to work.
It is a huge accomplishment if I make it out of my house at all in a day. Cooking, once my favorite hobby, seems daunting and I must constantly search for foods that do not cause an allergic reaction. Everyday tasks that once seemed easy, now take every ounce of my energy to complete.
Two years ago, my life took a devastating turn. I had been feeling “off” for a few months. I was losing weight quickly and felt like the issue was stemming from my stomach. So, I went to a GI specialist. After my blood panel came back normal, he said whatever it is will pass and recommended I resume normal activity.
Shortly after, I went on vacation with my husband and in-laws. Then, all hell broke loose. I felt painfully weak and fatigued and began to have panic attacks, which I had never had before. It felt like they were triggered by something in my stomach.
I Really Thought I Was Going To Die
By the end of the trip, I was too sick to fly. We rented a car and drove 19 hours home. I really thought I was going to die. I kept asking my body to stay strong enough to make it home so I could die in my bed.
By the time we arrived, I had an array of symptoms: severe aches and pains, a burning sensation all over my body, brain fog, shortness of breath, severe fatigue, and heart palpitations.
For the next year and a half, I was primarily house-bound, except for doctor visits. I went back to the GI specialist, who now said I had small intestinal bacterial overgrowth (SIBO). I could not tolerate the antibiotics he prescribed. I stopped them and went to an internist who said I had leaky gut and started me on that protocol.
With little improvement, I went to yet another GI specialist who could also not find anything wrong with my blood panel. He said my SIBO was not bad enough to cause the symptoms I was experiencing.
He then suggested it was all in my head. As did the next internist I saw. That’s the worst, isn’t it? Why would I make this up? I loved my life. This is the last thing I wanted to happen.
I was so weak and malnourished, I felt like I was dying. Why could no one help me? I felt like giving up. If not for my strong support system, I might have.
Many more doctor visits followed. Cardiologists, endocrinologists, energy healers, acupuncturists. You name it, I tried it. Still, no improvement and no answers.
Finally, A Breakthrough
I then stumbled upon an integrative GI doctor who changed everything. I went there not expecting him to tell me anything different then the last specialist, but he did. He said my symptoms sounded like Lyme disease, and that he was sure my test would reflect that.
I was not convinced. I had been tested for Lyme twice before and both tests had been negative. I did the testing again anyway and there it was—positive for Lyme.
A range of emotions came over me. Sad, angry that I hadn’t been tested properly before, skepticism, relieved that I finally had a diagnosis.
He referred me to a Lyme-literate doctor and that is when I slowly started getting better. The LLMD put me on immune-boosting supplements, Lyme-killing agents and weekly ozone IV treatments, which would knock me out for days on end.
Six months later, I am better but not yet back to myself. I still have setbacks. I have brain fog, aches and pains, food and chemical sensitivities, anxiety and fatigue. I continue with weekly IV treatments and take more supplements than I can count.
I still have days consumed by tears because of how much my life has changed. I still face excruciating thoughts rolling through my head. Is this my new normal? It can’t be. I won’t let it be.
I do think the worst is behind me and my goal is that when I am strong enough, I will dedicate my time to helping those with Lyme and co-infections. We need to build awareness. It is misdiagnosed way too often. Lyme hides. Proper testing Is essential. We need to make treatment readily available and affordable for those in need.
Until then, stay strong my fellow Lymies. And know that you are not alone.
Jacquelyn Golan lives in Los Angeles.
This story has a common theme: vague symptoms that doctors completely underestimate which grow unabated over time leaving a person a shell of who they were before.
In this day and age with all the information that has come out about ticks moving everywhere, of stories such as this one, of the CDC finally admitting there are 300,000 NEW cases of Lyme per year with the actual number being much higher, and finally telling doctors to treat empirically without waiting for test results https://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/, you would think TBI’s (tick borne infections) would be nearly the FIRST thing that goes through a doctor’s mind particularly in an endemic area.
Yes, Lyme isn’t everything but LYME CAN BE ANYTHING.
This is another story and example of how unprepared most doctors are to diagnose and treat one of the most complex illness(es) known to man. The writer does not mention coinfections but the fact she is so ill would indicate to me by experience that there is involvement, making her case even more complex. Also, it is widely known in the Lyme world that borrelia has many strains – one discovered recently – and the symptomology can present differently. https://madisonarealymesupportgroup.com/2017/09/11/new-borrelia-strain-lanei-discovered-named-after-dr-lane/
Please remember that current 2-tiered CDC testing uses ONE STRAIN. Can you see why so many test negatively? https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/