It's been a long time in waiting for me to start a blog about my family's illness with Chronic Lyme Disease and Co-Infections, because most of my time is spent caring for 3 out of 5 members of my family who are still chronically ill. It is a disease that takes over your life, and is a disease that so many doctors still don't believe exists (which is one of the hardest parts to deal with). Our journey began so long ago it's difficult to comprehend, so to simplify it as best I can I will share it in stages. Our eldest daughter was born sick over 18 years ago, there was some sort of infection, but they didn't know what it was and decided the best course was to give her a shot of penicillin before we even brought her home. From that point on she had extreme discomfort in her abdomen and other issues we dealt with. We would see doctors off and on, all of the time, for years. Just when we thought we'd get an answer or be given a solution, another health issue would start.
When we had our second child we were grateful that she appeared to be healthy and thriving until she began 2nd grade. At this point everything began to turn upside down. Our second child began getting sick with many colds and flus, and then was diagnosed with Epstein Barr. Her immune system seemed very compromised, and would get sick if she was around anyone else that was sick. My husband, who has always been very healthy his whole life, also at this time began experiencing serious neurological issues. He started feeling very week on his left side, and began falling. After a year of doctor visits, lab work ups, and testing (ruling out everything else) we were finally given a diagnosis of PLS (Primary Lateral Sclerosis, the sister to ALS). It was daunting to have this incurable life threatening diagnosis, and still trying to figure out what our daughters were suffering from. From this point on my second daughter never regained the energy she once had, and just kept getting sick a lot, but was still able to go to school.
Three years had passed and we continued to keep positive attitudes and our faith that somehow and some way we would figure out why everyone was so sick with different issues. It was sometime during our second daughters 5th grade year that she began getting even more sick. First with flu like symptoms, then severe abdominal pain where she couldn't leave the house. It went on for so long she wasn't able to return to school, and we were faced yet again seeing doctor after doctor, and doing test after test. When we received news from one of the doctors that she had a parasite we were puzzled, and then when the doctor had mentioned that one of the markers from the blood test revealed she maybe had Lyme Disease we were even more confused? A few months later friends of ours had seen an article in the newspaper about a man with Lyme Disease , but was previously diagnosed with ALS, and said you guys should really check this out. So this is when our Lyme journey began.
Once we found a Lyme literate doctor, our suffering of so many different things, which could never be explained, started to unravel. We had our second daughter tested specifically for Lyme and it showed she had it. Finally we got an answer, so we thought! However, we had no idea the journey we were about to embark on, and no idea that most of the doctors didn't believe Chronic Lyme even exists (especially on the West Coast)! It was also the beginning of an education in learning Lyme Disease is not just Lyme Disease. There are Co-Infections that cause just as much suffering, parasites, candida, and more. We were faced with something so big, so incomprehensible, that even today after all of these years, we still find it hard to believe more is not being done. For this growing epidemic is only getting bigger and worse every single day! And, the amount of suffering that goes along with this disease both mentally and physically is inexcusable!
Once we began to learn more about our second daughter and her symptoms we seriously started to look at the possibility of whether our other daughter and my husband's strange symptoms were related. I mean could it be? Yes. The answer was yes! It could be! But, we kept getting told, no. So many other doctors would say these illnesses are not related, and are separate issues. Our gut and instincts were telling us they were wrong! So after all of the years of spending enormous amounts of money on doctor visits, testing, you name it the answer was starting to uncover itself not for one of my family members, but for three! All of the sudden the years spent agonizing over my dear husband and daughters illnesses was beginning to finally make sense? These were not separate illnesses, I whispered to myself, these were somehow related! Related!
Ironically, when we were beginning to get real answers from our Lyme literate doctor and treatment for our second daughter, our older daughter who had had mental and physical issues her whole life, started doing a little bit better!?! Go figure. I don't know why she did, but she did. Many of her symptoms started to lessen, but my husband continued to go down hill: Falling, failing speech, and difficulties with just about everything. So we began Lyme testing for him. After many attempts with testing, they all came out inconclusive, however in the PLS and ALS world as of then (I don't know about now) there was really no treatment. We thought long and hard, then decided to start him on Lyme treatment. Much to our surprise after a year being on treatment, we noticed he seemed a little stronger and his speech a little bit better, which in the PLS world you don't. It's a slow decline, but you continue to decline, and he was stabilizing! So we've continued Lyme treatment ever since. He's still handicap and uses 2 canes now, but gets around and works every day! He's had a port, a peripheral line, shots, and oral antibiotics for the past 4 (+) years, and although the treatment is very expensive and difficult to be on, he is still maintaining, which if he hadn't been on the treatment, we believe he'd be in a wheelchair and have great difficulty being able to speak at all.
Our eldest daughter was doing quite well in high school then about 2 years ago she began to have extreme chronic joint pain, and other issues suddenly resurfaced. She was on the swim team and had to quit because of the pain. We immediately had her tested, and when we heard she also had Lyme Disease/Co-Infections all of the pieces to our shattered life's puzzle of illness came to a conclusion. To say the least we were devastated! We have spent over 18 years dealing with something chronically week to week, and all because of Chronic Lyme Disease. A disease ignored by so many health professionals. A disease that when you mention it's what you have, you are immediately judged because people say, but you like fine.
There are countless difficulties in this disease, but one of the hardest is the comment I hear weekly in my household, “I feel like I'm dying inside.” Lyme sufferers are all different. Some have similar symptoms, and some have very different. In our family each case is different in that my husband has been affected neurologically, but all have severe joint pain, fogginess, stomach issues, and more. The anxiety is one of the worst aspects of this relentless disease, and again because people can't see it, it's so very hard for them to understand, which makes it even worse for the person suffering.
As of right now Scott will be undergoing a new treatment called the PK protocol, only 300 or so people have tried it in the world, but we are hopeful. Our second daughter has a picc-line and is able to go to school part time, and our eldest daughter was doing incredibly well but just had a relapse last month and had to come home for the semester.
This disease is complex on so many levels, and I know very hard to understand, however it's real and every day someone else is being infected. We appreciate all of the love and support people give our family because we know it has not been an easy 18 years, but we are always doing our best to move forward. Our dream is that by sharing our story no one else has to endure the pain and suffering our family has had to endure for all of these years!
Because this was my first post it was extra long. I'm going to try and post weekly updates or maybe every 2 weeks. I appreciate the love and support so many have shown our family in both the dark and sunny times! Thank you for your prayers and positive thoughts too! They are the best gift you can give us!
May is “Lyme Awareness” month!