I’m a teacher, and my journey with Lyme began about 23 years ago.
And I look back, and I think about my own family. Not only do I have Lyme, my sister has it. My mother has had it. My father has it. Even our dogs had it. Everyone in my family has it.
I was first diagnosed with Lyme at age 18 when I went to my pediatrician. So he gave me two weeks of doxy (Doxycycline) and said, you’ll be fine. I did that. And I guess I wasn’t so fine.
When I was in college, maybe a year or two later, I was having really bad headaches. I was tired. And I remember having some cognitive problems. I remember struggling at times, going, “what’s wrong with me? Why can’t I think of the right word? [Why can’t I even string a sentence together?” Something that should have been done in maybe two hours was taking me a day and a half to complete.
And that’s when I started seeing Dr. Rifai, and I would go on some orals. And then, being a typical college kid, I didn’t always take my meds. I’d take them, I’d stop, I’d take them, I’d stop.
When I came out of college and I was no longer using a pediatrician anymore, I went to see Dr. Rifai. She was our family doctor, and I felt very comfortable because my parents used her and trusted her, as the doctor. But also because I knew that she herself had Lyme, and was treating it. And I felt, well, what better hands can I be in than having your regular doctor also be knowledgeable about Lyme?
When I first started treatment with Dr. Rifai, it began with orals. And then it became, let’s try a month of Rocephin. That was the protocol. And I think as we went on with the Rocephin, and we would finish a month’s worth of treatment, — it worked, but then as the months went on, I’d seem to have more symptoms come back.
And I think Dr. Rifai also eventually learned — through herself, through her own treatment, through her own symptoms and with other patients, — that one month wasn’t enough. And that she would bump it up to a few more months at a time.
I was also going through getting my Master’s for my teaching degree. And I remember really having a tough time, taking those classes, and sometimes having to actually withdraw from some of my Master’s classes, because I couldn’t focus. Whatever the professor was saying went in one ear and out the other. I couldn’t hold onto any information. And even going home and reading the textbooks, I found myself reading the same page five, six, seven, eight times, and still not having any idea what I just read.
And I realized how deeply my Lyme was bothering me at that point, that I couldn’t function. Because my Lyme was so severe, it was really impeding my being able to do the work, and be able to finish the class and with a passing grade. I was so fearful of failing it that I withdrew a few times. And it took me a long time to get through my Master’s.
And when I finally graduated and was working, my Lyme returned. And I remember dragging myself back to Dr. Rifai, saying, now I can’t think. My head hurts so bad. I have so many joint pains, muscle pains. Every joint in my body seized up on me, and I felt like a cripple.
The symptoms ranged from everything. I had heart palpitations. It felt like my heart was pumping out of my chest.
I had everything from not being able to think of words, not being able to remember things. My speech would get slurred. I would blend words together, and really feel embarrassed, and wouldn’t be able to explain it.
I remember muscle pains that would take my breath away. I had so many different symptoms that were so unexplainable, even feeling like I had baby ants crawling on my arms.
Even floaters in my eyes. I remember going to the eye doctor and saying I had a floater that was so big, I thought it was the shadow of a person, and it made me literally jump out of my seat. And he said no, no, no, it couldn’t be anything like that. It was probably my imagination. And I thought, no, this was no imagination.
I had two beautiful boys and a wonderful husband. We had just bought our dream house. I had a great job. And I remember lying in bed thinking, what do I have to get up for? What do I have to live for? And that scared me to my core. And I knew that wasn’t me. I’m a very happy go lucky person.
And over time, over the years, I have dips and valleys. But at least I know it’s not me. It’s not forever. I’m just going through kind of the cycle. That sometimes the Lyme and the Bartonella, and all the other tick-related illnesses bring out in me.
I haven’t been like that in a really long time, and I attribute that to the treatment that I’m getting, that I have been getting. I’ve been dripping for three solid years now, IV Rocephin and IV Zithromax, along with some other antibiotics along the way.
I have to say that being able to drip with other people, and share symptoms, is most empowering. And it gives you that acknowledgement that you’re not the only one. You’re not making it up. This is not a fluke. There are other people just like you. And you feel so much better. Not that you’re enjoying that anyone else is sick, but that you can associate someone else’s symptoms with your own, and that you’re not the only one.
It’s almost like a peer group that you kind of lean on, and you can talk through, and know that each day might be different. But in the long run, you’re getting better and better.
It’s difficult, and it’s difficult on my family. It’s difficult on me. It’s time consuming, but all I know is that there is a light at the end of the tunnel, and that it’s all worth it in the end.
And what I’m so thankful for with Dr. Rifai, is that every time we go over symptoms, — usually on a weekly to biweekly basis, depending on what symptoms I’m having at that point — she can pinpoint, “Oh, that’s Bartonella. Oh, that’s Lyme.” And then, she will tweak the meds accordingly. She knows what you’re going through, as she has it also. And I can’t tell you the last time I felt this good.
When my first son was four years old, he started getting carsick out of the blue. He started having headaches. He started complaining of being tired, and this is an active child. He would cry or be angry, and he’d be on the floor.
And I’d say, what’s wrong? This isn’t like you. The most easygoing, happy boy in the world was a mess, literally a puddle on the floor. And when I’d ask him what’s wrong, he would cry and say, “I don’t know.”
He started complaining about his knees hurting, and not being able to walk up the stairs from the basement to the house. And I put all these pieces together, and thought, oh no, does he have Lyme?
And having gone to Dr. Rifai and known her for so long, and knowing how she is looking out to make her patients better, that I felt completely comfortable bringing my son to her, and asking her to please treat him.
But going to her each week, or every other week sometimes, and going over symptoms, again, she would tweak the meds depending on what kind of symptoms were coming out. And I saw such an improvement with him. And we look back and know that that was definitely another one of his Lyme symptoms that came out, and has been cured. He doesn’t have those same problems anymore.
Unfortunately, my younger son also has had a tough life with it. He was about five years old, a happy little boy, always smiling. And then, there was the day when he said to me, “Mommy, I’m so tired. Can you carry me to my bed? I can’t walk down the hall.” And I thought, what’s wrong? Who is this child?
And he was complaining of headaches every day. And at school, he started going to the nurse every single day. I had to bring Tylenol or Advil, and leave it with the nurse, because it would be so intense, he couldn’t do his work.
We came to Dr. Rifai. And again, she would go over symptoms, and based on the symptoms that were presenting at that time, she would tweak his meds, change them up, depending on what was coming out. He’s had a little bit of a tougher road, and I think he may have had it since birth.
And I realized, he’s been living with this so long, he doesn’t know what’s normal and what’s not normal anymore. And I learned to ask him about symptoms that I experience, and ask him if he had the same. And I found out he has ringing in his ears, like I do, the creepy crawlers on the skin.
He would get tired, and his knees would hurt. He would be car sick. So, again, all these things added up and I found out he also had Lyme. And his seven months of Rocephin really, really helped.
Ty, my little bundle of energy, is doing so much better now. He is in so much better shape than he ever was. He’s still on some orals, because he still has a few lingering symptoms. But from where he started to where he is now, it’s amazing the difference. I only wish I had taken him to Dr. Rifai sooner.
He even told me the other day, “Mom, remember how bad it was? I’m so glad I’m so much better now. “
A long time ago, I really wasn’t functioning. I don’t know what I would have done without the treatment that I’ve gotten. I wouldn’t be able to be a teacher, be a mom. I’m so grateful for Dr. Rifai and the treatment that I’ve gotten. It’s been a long road, and I know it’s not over yet. But I know there is a light at the end of the tunnel, at least for me.
I think about all those people out there with Lyme that don’t have a Dr. Rifai. And the people out there saying, chronic Lyme does not exist. It’s not real. I really wish that more people would open up their minds, and do the research, and find a cure.