My Lyme journey from my brothers perspective, part 1
Note: In this interview with my brother, we cover our experience with Lyme disease. .
A good amount of what we talk about, is from things that happened several years ago early on in my Lyme disease journey. Because of this the situations that we talk about surrounding Lyme may not be the situation today.
We also cover things from both of our perspectives and emotions which at times may not be completely factual. I also talk about family members who have had it, as it shaped has my views and experience with Lyme.
BEFORE, ANY OF US GOT SICK WHEN WE WERE IN THE PROCESS OF TRYING TO FIGURE OUT WHAT WAS WRONG. WHAT WAS IT LIKE GOING TO DOCTORS, GETTING A DIAGNOSIS, OR JUST GETTING ANSWERS?
My brother (Joe): It was a nightmare! I have an especially vivid memory of when mom was so desperate for any kind of help or answer. Any kind of referral to someone that might have knowledge. When we would go into doctor's appointments we would go in and wait for a cancellation in the office.
I remember mom would have me drive her to the doctor's office, and I'd wheel her in a wheelchair and she would wait, because the specialists, she was trying to get into had waiting lists many, many months long. And some of them were like six months plus a long waiting list to get into. So that was the only way because she was not a patient with them. She was considered a new patient because she'd never had an appointment with them before.
It was a difficult time. I remember the stories she told me of her time there. When the nurses would come up to her and say ‘you cannot push the doctor like this, you don't realize how much he has on his plate. And her response was, ‘I don't have any other choice, this is the only choice I have. It was horrible, trying to figure out what was wrong with her. It took, I don't know how long, around a year to nine months.
That is what people don't realize. The worst thing is not knowing that you have, cancer, Lyme, whatever, awful disease you have. It's not knowing what you have and having everybody tell you, this is in your head, you're crazy you aren't sick. I know you have experience. And when it's every single doctor you go to has no idea. It is a whole new level of scary.
HOW WAS MY EXPERIENCE OF GETTING DIAGNOSED DIFFERENT FROM MOM’S EXPERIENCE?
Joe: We had already lived through mom, so we saw it coming a little more. Once you have had one person in the family have it, you are looking for it.
Karen: Before I got diagnosed and I was looking for answers, it was easier because mom knew what to look for. And because we already knew a doctor who knew how to treat Lyme.
Joe: You knew who to go to. We knew who to go to and to ask questions. We learned, that there were only two doctors in the entire state that knew what Lyme disease was, and were willing to talk with you about it. Because Lyme disease in Oregon, as you may or you may not know, is a political issue that has been around for many years. Not so much on the East Coast, I have talked to people who have lived on the East Coast and it's very different there.
BEFORE I GOT DIAGNOSED WITH LYME DISEASE WHAT HEALTH PROBLEMS DID I HAVE EARLIER IN LIFE?
Joe: You always had a lot of intestinal problems.
Karen: I remember going to the GI doctor in high school and they didn't help me at all.
Joe: I know you have always had heart problems. Whether we realized it or not. You have always had issues with your neck and your spine. Then Lyme came along and just destroyed your immune system, and things just spiraled out of control from there.
Karen: I think before I got diagnosed, the main issues for me were with my heart. And a lot of pain, nerve pain, joint pain, and every type of pain you could think of. I had many issues with my heart and the cardiologist said “you're young, there is nothing wrong with you, you're not having any issues”. When I went to a cardiologist for the first time, I think I was 20 or 21. I went to the cardiologist at 20 for heart palpitations and chest pain and inability to breathe.
Joe: Quite frankly a lot of things that are symptoms of Lyme disease are so easily overlooked and not noticed especially when people are not experienced with Lyme disease. Which is the case, around here (in Oregon) there's not very many people who know what Lyme disease is.
WHAT CHANGED AFTER I GOT A DIAGNOSIS AND STARTED TREATMENT?
Joe: You got a lot worse. And we knew you would get a lot worse, because of our experiences with mom and how the antibiotics work. I was not surprised at all. I was not looking forward to watching you go through it. I do not know if I necessarily knew what would happen, but it was there in the back of my head, I was not ignorant of it.
Karen: If you hadn’t had any previous experience with Lyme do you think you would have known what to do?
Joe: I would have been completely blindsided. I would have had no idea, I barely knew what to do as it was, Karen.
Realize, I mean, I tried my best, that is about the best you can do in that situation. With Lyme disease, there is no clear path saying, do this, this and this, and then it goes away. It is just not how it works. You can throw massive quantities of antibiotics at it, and you cross your fingers and pray. And what happens when there is no guarantee one way or the other.
AFTER I STARTED TREATMENT DO YOU REMEMBER SPECIFIC SYMPTOMS THAT CAME UP OR GOT WORSE?
Joe: You started to have seizures.
Karen: Yes, and I was very vocal during them as I was scared. I made sure I was talking to you. It was the only way I knew that I was still breathing and my heart was still pumping is if I would start screaming so then I could hear myself. I remember just being angry. Having intense rage and anger. I did have reasons, other things were going on in my life that I had reasons to be angry about, but it was irrational. It was irrational the things I would get angry about or the level of anger.
Joe: It gets in your head.
Karen: I feel like during those times when I was angry for a reason that didn't make sense, or just for whatever reason, your response was to not take it personally.
Joe: I knew you were mad because of Lyme and co-infections, I didn't blame you at that time.
Karen: You were very much you're willing to go through whatever was happening with me." You didn't have any expectations of what I should be like, what I should be doing, or how I should respond to what's happening.
Joe: It's hard to have expectations with someone when they're too busy having seizures because of the disease and the drugs they're on, or they are hyperventilating. You learn real quick that having expectations is a dumb idea.
Karen: I was a caregiver to mom when she got sick the second time. If you have not learned beforehand, it's hard to know the best way to support someone who is suffering and in pain, and there's absolutely nothing you can do to ease physically ease their suffering or mentally ease their suffering. How do you best support that person? It is hard to know what to do.
Joe: Or when you are sitting in the doctor's office getting needles jabbed into you with all kinds of stuff injected into you. Sometimes the best thing you do is grab their hand and say "look me in the eye and ignore what's going on, hold my hand as tight as you can" and just being there. I do not know how much people realize the comfort of another human voice can be. Just sitting there next to you sometimes was all you needed. I understood that is something I could do. A lot of times it is literally that, the physical presence of another person that you know is there willingly. It doesn't get much more complicated than that a lot of the time.
Karen: In all the years I have been sick, it is been too long. There was so much of it that I was so bad and in so much pain, that I just blanked out. I have forgotten because it was so traumatic.
Bartanella is a co-infection of Lyme disease. Some of it’s symptoms are acute psychiatric symptoms including rage, anxiety, severe depression, brain fog, difficult thinking and articulating, and schizophrenic-like mental function (2).
Sources:
https://www.lymedisease.org/mylymedata/lyme-disease-patients-fda-study/
Healing Lyme disease coinfections, complementary and holistic treatments for Bartonella and Mycoplasma, by Stephen Harrod Buhner.
