Hard-earned “Lyme education” shouldn’t go to waste
This is one of a series of guest blogs by people who have enrolled in MyLymeData.
by Sandi Bohle
I’ve probably had Lyme disease since 2007/08, when I first started noticing muscle weakness, fatigue, headaches, and not being able to catch my breath. At the time, I lived in New York’s Hudson Valley, near the Hudson River and the Catskill Mountains. It was a beautiful place, and I spent a lot of time outdoors.
I ignored my symptoms for quite awhile. My doctor in NY dismissed my bites as spider bites, because I never had a bull’s-eye rash and my bites were along my hairline on the back of my head. My doctor wouldn’t test for Lyme disease (or anything else), telling me I was just overworked and stressed.
I have worked in the entertainment industry for over thirty years, as a lighting designer, technician, stage manager, and production manager. It is a physically and psychologically taxing industry. As my symptoms escalated over the next few years. I had to change the way I did my job, depending more on my co-workers and looking for easier ways to get things done. Meanwhile, my doctor still insisted that I was fine.
My world came crashing down July 4th, 2011, a month after I’d moved back to Los Angeles, when the sidewalk outside the post office jumped up and grabbed me. My legs had collapsed with no warning. Knowing something was desperately wrong, I rode an emotional roller coaster of stupidity, doctors, tests, of being mis-diagnosed with MS, ALS, Parkinson’s, Epstein-Barr, lupus, and fibromyalgia, as well as being told it was all in my head.
My long list of symptoms included falling down, extreme pain, numbness, brain fog, mini-seizures, and vision problems. My intuition said chronic Lyme, since I had many of its classic symptoms. But no doctor would order any definitive tests. They either doubted or ignored me.
One physician did want to help me, but was puzzled by it all. She sent me off to a major university medical center, assuming that the experts there would figure it out. Those doctors first said fibromyalgia. They then diagnosed me with ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrig’s disease) and put me on a combination of pain killers and muscle relaxants that just made me stupid and unable to function.
Then they sent me home to die. I swear it was just to shut me up because I kept asking them to test for Lyme. They would ask me at every appointment why I thought it was Lyme. I brought in armloads of paperwork and reports on the rise of Lyme in NY’s Ulster and Dutchess counties, where I had lived and which at that time had the highest incidence of Lyme in the country. The doctors still rejected Lyme as a possibility.
They also gave me a flu shot that made me unable to use my arms for a week. Someone had to take care of me. That same week I went for a free consultation at an out-of-network medical group that specialized in Lyme. After sitting with me for half an hour, this doctor knew intuitively that it was Lyme.
In November 2011, I started paying out of pocket to see her, because my medical insurance wouldn’t pay for it. She immediately ordered blood tests that confirmed four co-infections: Babesia, Bartonella, Mycoplasma, and Rocky Mountain spotted fever. My doctor has been great. I’ve been with her for more than four years now. She ran a blood culture and we got our definitive answer in April 2012….late stage chronic Lyme. Vindication! I also had a funny sense of relief because it wasn’t ALS (little did I know what was to come….).
I had to stop working. Lyme had settled in my central nervous system and brain, bringing major cognitive issues. I also lost a lot of weight. (I don’t recommend this method of weight loss. I went from a size 12 to a size 4.) A port-a-cath was put in my chest in July 2012 so we could cross the blood-brain barrier with heavy doses of IV antibiotics, seven days a week. My insurance paid for a few months for this. After that, I cashed everything out to take care of myself. My life insurance, my annuity, my 401k. Maxed out my credit cards. Life had changed as I never imagined it could.
It’s been a battle with a “take no prisoners” attitude. After rounds of heavy duty antibiotics, herbal protocols, supplements, and supportive IVs, I’m now a year into remission. I’m almost completely back now. I’m working again and go to the gym three days a week. In my darkest days, I never imagined that I would return ever to this reality. And yet, here I am.
I’ve learned a lot about what works for me through these years of treatment. And I don’t want all this “education” to go to waste. That’s why I’ve signed up for MyLymeData. It’s a way for Lyme patients to pool their experiences, so researchers can look for patterns—an important step to finding effective testing and treatment. And eventually a cure!
Won’t you join me, by adding your Lyme data to MyLymeData? Let’s get this show on the road.
Click here for more information about MyLymeData.
Sandi Bohle is a Lyme activist in Southern California.
It never, ever, fails to surprise and upset me that doctors ignore sick people. If Sandi had been listened the first time she suspected Lyme, Sandi would not have lost so much time and personal wealth, and her treatment would have cost less. Unacceptable!! We need to bind together and sue this establishment medial system, and those who support them. As examples drug companies, insurance companies, government. Can we do this?
sandi, thank you for your story above where i went thru so many of the steps and misdiagnoses with you.
sandi, please go to this link looking for link from timaca who got thousands of $$$ reimbursed for picc line after 1 month! she did an outstanding job of step by step details to help thousands of other patients.
http://www.mdjunction.com/forums/lyme-disease-support-forums/tips/1390852-insurance-links-to-fight-for-payment
best wishes, hugs/prayers,
bettyg, iowa activist
47 yrs. CLD
35 yrs. MISDIAGNOSED by 40-50 drs.
unacceptable!
This happens way too often….everyone is so hooked on the medical profession . We all need to wake up and smell the coffee..hoping for your speedy recovery!!…..this also happened to me
I have Morgellon and they think it’s related to lyme
Cora, I am so very sorry you have Morgellens. I do not see many with this post here or other Lyme forums. If any condition can be worse to live with than Lyme, it is Lyme and Morgellens. I hope you can find relief. God be with you.
Sandi, your story is like mine and so many other’s I know. Dr.’s in the North East where I live are pretty much clueless when it comes to LD (it’s so prevalent here too). They need to be better educated but by who? More research needs to be done to help find a cure or at least educate people better who are sick to help them recover. I’d love to hear about your success story and what worked to help you get better. Alicia in CT
Happened to me as well. Was a new mommy, was dying a slow painful death, missing out on life and my baby….and FINALLY found two outstanding LLMDs who helped me getting well over many years and hundreds of thousands of dollars. I made a big recovery, divorced, am raising a young child as a single parent, went back to school, and have become a very skilled clinical hypnotherapist who now help others with chronic illness and other traumas.
The suffering of chronic Lyme disease is tremendous. AND…YOU CAN HEAL AND GET WELL AGAIN AND GET A LIFE BACK. No shame. Fight like hell. Be your own best advocate. Never give up. Leave no stone unturned. Trust your instincts. You CAN beat this.
XOXO
Jules, we hope you’ll sign up for MyLymeData. We need to learn from stories like yours.
God bless Sandi I also was told it was a spider bite by my MD & then a PA told me I had giant hives when I broke with a quarter size blotched rash on my chest he gave me predisone which increased the size & they spread. My friends saw the rash they have degrees inepidimology told me it was erethema margins a Lymes rash. Went I Doxie & thanks God it was in time before I had all the other symptoms.
It is like listening to a record the same story told by hundreds of thousands of people around the globe
I was successful doggie pet spa owner aka mobile dog groomer
2 months into starting my business I was bit by a dog tick and not from some mangy mutt as one might think but from 2 show dogs who lived in a very affluent neighborhood on golf course with many beautiful forests around them
The tick wasn’t engorged, no bulls eye rash and only was attached for about 8 hrs
That was in 2005 and the good old Internet stated you can only catch lyme from deer ticks and is accompanied by a bullseye oh and lets not forget, there is no lyme in Florida
So phew I thought I dodged a bullet
Fast forward 11yrs later I just turned 47
I have been bed/home bound for almost 7 yrs, no longer a functional member of society
I too have been to a slew (lost count) of docs both in Florida and Pennsylvania
All dismissive except for the handful that tried to help
but after spending so much time and too much money with each of them I just never got well had been told by each of them I was a complicated case
So with that said
I have been on pain management , I live alone and because I don’t ” look sick ” even when I am using my cane
I don’t get the help or support that is needed
It’s a very complex illness and I’ve seen too much tragedy within the lyme communuity just in this past year
The pain, the suffering, and the ridicule needs to end
A big shout out to Yolanda foster for documenting her journey in front of millions it has sparked more interest and hopefully understanding
And to all of you who have made it to the other side and our being not only mine but all of those who are to ill to fight , may you be our shining light!
GODSPEED
I hope you’ll take the time to register for MyLymeData. Your information is an important part of the picture.–Dorothy Leland
Yes Dorothy I did share my story with mylymedata, although I havnt a clue how long ago or what all I wrote thanks to the cognitive issues from lyme
Today I had a bit of clarity and it took me over an hour to write the above post thank goodness for spell check
Thank you, Sandi. I was left to die too, after many years of relapse/remission symptoms which gradually got worse and eventually floored me completely in 2007. Numerous doctors told me there was nothing medically wrong as all the test results were negative. I eventually found a private doctor who understood what I was telling him and got the right diagnosis (a variety of Borrelia strains, Babesia & Ehrlichia). By then I was too ill to work, and I had to sell my home to pay for treatment – I wouldn’t have survived without it.
Thank you for your positive story because how the story ends for a lot of people doesn’t include getting back to your “life as you knew it”. I have been fighting for the past two years trying to get back to work and people around me, who love and know me, tell me to just give it up and accept things the way they are. I just can’t and won’t!! Im willing to keep fighting and not let this take more from me than it already has. Trying to keep an A type personality/sales rep down is tough thing to do, and yes sometimes to my detriment. But I know there is light at the end of the tunnel and for those of you out there still struggling please don’t give up. You have to do lots of research and be your own advocate in this.
Hi,
It is always nice to see that people can get better in late stage.
Can I ask if you had skin changes/burning? This is my worst symptoms. I have recently been dianosed through Igenex. But my health actually declined after taking repeat antibiotics for ear infections. I am still looking for someone that can help me. I tried a tincture but my burning mouth got worse.
Thanks,
Becky