Margarite R. F. from Colorado
Updated: May 3, 2020
How long do you believe you have had Lyme?
I went 30 years undiagnosed.
How long did it take you to get a diagnosis?
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes, I have been sick my whole life. I can’t remember not being sick.
Pediatrician x 3
Psychiatrist x 4
Campus Health Clinic (36 visits)
OBGYN x 9
Fertility surgeon who did surgery (*I’m not including the 3 anesthesiologists for the spinal tap)
Pediatric surgeon who did surgery (*)
Neurologist x 8
Physical pain doctor x 1
Internists x 16
Neurosurgeon x 3
Orthopedist x 2
Physical Therapist x 4
Therapist x 7
Minor ER doctors x 10
ER doctors x 8
Hand doctor x 3
Rheumatologist x 1
Cardiologist x 1
Ophthalmologist x 2
All of these visits related to Lyme symptoms, not general maintenance. 84 total - not including campus health clinic visits!
Anything else you would like to share about trying to find a diagnosis?
I became sick in middle school in waves and was disregarded, laughed at, mocked, and scolded by doctors and family for wasting their time until I showed severe, outward signs of illness (like tremors, passing out, inability to stand without falling, multiple cases of anaphylaxis, etc.). My family didn’t understand and often said, “Just get up!” “Quit doing this.”
Believe yourself. Trust yourself. Pat yourself on the back for making it through the nonsense of diagnosis. Going through your diagnosis well - you’ll be one of my heroes.
How long have you been treating Lyme for?
Do you have any coinfections?
What types of treatments have you tried?
Antibiotics, supplements, and Mepron.
List up to 5 of your biggest (past or current) symptoms:
(In no particular order):
Inability to access thoughts - past (memories) and future (planning). I can't read due to lack of memory retention, and I often get lost.
PAIN - pain everywhere, especially burning in my neck since I was 13. Sometimes it gets locked up so badly that I have to be carried to the bathroom.
Inability to walk at certain times because of weakness or daily dizziness.
Monthly (like clockwork) stomach/abdomen shutdown and vomiting/diarrhea for a couple of days, which floors me.
Fatigue where I can’t lift my head or hands. (I haven’t exercised since I was in middle school).
What is the biggest way that Lyme has affected your life?
I’ve come to realize my entire life has been dictated by mitigating symptoms and it’s affected every life choice - in addition to the financial burden of being single and always broke. I’ve never been able to sustain a relationship because I was told, “I’m too lazy,” or because I’ve had absolutely no sex drive ever. I wanted a husband & children and never got to have them - much less the derailment of my powerful ambitions for career and academic success. Overall, this disease SUCKS ass and has dictated my life.
What is one thing you wish people knew about Lyme Disease?
I wish that people understood that Lyme is a serious disease just like HIV or cancer - If left untreated, it is completely disabling.
Any advice for someone newly diagnosed with Lyme?
Do research and choose your own treatment that’s right for you, whether that be traditional medicine or naturopathy - or a combination. Be your own advocate and know your choices. When you do choose, be compliant. Don’t cheat on your diet, meds, etc. Get a therapist that specializes in chronic illness. Know you will have a financial disaster through this—Prepare and don’t blame yourself. It is a long road to healing and although you may intellectualize this going into it, I will tell you, it will shock and beat you down before it’s over, no matter how prepared you think you are. Having a trusted therapist will help you go through this with the least amount of emotional pain. Know that most of your friends and family will not know how to talk to you and will give “radio silence” or mock the seriousness of your disease. They tend to slip away and never reach out. Know this before they do it and have empathy that they just don’t know. You will find your advocates and who they are will surprise you. The anger of being let down by those close to you is so painful, and going in with a forgiving nature of what to expect, can help with your reactions. Learn to compromise other things, but not yourself. You’re probably used to pushing through. You can’t do that anymore and it’s so hard to know that going to dinner with friends may set you back a few days in bed. Learn your patterns. Learn to create balance based on YOUR needs, not what you’d like to be doing. You’ll feel alone. Learn to be happy with yourself and know that YOU ARE NOT ALONE in this isolation. Your therapist can help you deal, but find outlets—like books on tape, meditation, unlimited talk time, etc.—to keep you sane as you go through this. Also, many people don’t talk about this aspect, but you’ll feel like you’re going nuts. The neuro-psychological effects are real and know that these too will pass, but they take a long time and treatment can make it worse. It’s okay to feel crazy, pace around, be paranoid, filled with anxiety and rage at the world, because these are symptoms that have happened to you. Just don’t hurt anyone—double-think about letting people know you’re anger at them; you might regret it later. Please, please, please know that none of this is your fault. Again, NONE of THIS is YOUR FAULT. It took me 30 years to understand that one.
Fun fact time! What is your favorite thing to do in your free time?
Well, writing when I can.