Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
Hello everyone, I'm new to this group so I'll give a summary of my life with lymes up to this point. I'm currently a 21 year old pursuing a degree in mechanical engineering. I was diagnosed with lymes late in my senior year of high school, so I'm not new to the disease. I've recieved heavy doses of antibiotic treatments (both IV and pill) and continue to take light doses of antibiotics along with many supplements. I'm writing this because I've been really struggling with my symptoms as of late, and as a result, struggling with life in general. I've never had the opportunity to speak with someone who also struggles with this disease, so I look forward to speak to someone who really empathizes with the issues that I'm having.
Going into the spring of my senior year I was feeling extremely excited to attend college. Working hard in the classroom and on the golf course blessed me with opportunities to attend a nice college on scholarship. I had never felt more motivated in my life to chase after success. Being a motivated individual was one of my favorite qualities about myself, and I never thought anything aside from old age would take that away. Que the lyme.
When I was first diagnosed I was actually excited to find out the cause behind the severe brain fog and fatigue I was feeling. The more I learned about the disease, however, the more I realized I was in for a journey. College became much more difficult than I expected. My passion for golf dwindled quickly due to many poor performances, regardless of the amount of work I was putting in. I began getting heckled by my teammates because they just couldn't understand how deeply this disease was effecting me on both a mental and physical level. I've since transferred schools and quit the sport because that high schooler who thought he could outwork absolutely anyone couldn't stand the heckling anymore.
I've since tried getting into the college party scene like 90% of other students for an escape from my workload. I figured the alcohol could help me relax and enjoy college a little more. The increase in alcohol has most definitely worsened my symptoms - mainly the brainfog and anxiety. So now this disease has isolated me from my peers in another way. My grades are also beginning to slip becasue its gotten very hard to focus or retain information. I feel very lonely because I've yet to speak to anyone else who really understands how frustrating this disease can be or how much this can effect who you are as a person. So thank you to anyone who actually takes the time to read this and respond. I find it very strange to be putting my thoughts down in front of strangers, but I also find it very theraputic to put my thoughts down in writing. If this seems similar to anyone I'd love to hear from you
Thanks
come and write your thoughts down as you say, to people whom you don't know. I could relate
to everything you said on a feeling level. I can't say as I have had your exact same experience
because mine happened to me much later in life. Yet, no matter when we loose the ability to do
the things we're used to on a daily basis, it has a huge impact on our lives. My illness probably
went misdiagnosed for probably ten years. I was into my fifties when that happened. Yet, I was
very active and working and looking forward to some retirement and travel. So. I had to stop
the work and the activities. I had trouble meeting friends at restaurants or socializing because my diet and lifestyle changed. You understand that I can tell. I did many treatments with a Lyme Literate doctor for some eight years. It got me out of the woods. There were rough spots and
sometimes long periods of down time. Now, I can go more places for which I"m very grateful.
I too learned to meditate and go to more spiritual type groups. I learned about alternative
medicines. I feel each person finds their way with this. I started one support group in my
city and later found a couple of others. Maybe there is one where you live? It may be too soon
for you, but hearing people share made a big difference to me. I had felt so alone in this.
I feel it's important to educate ourselves about this and to be our own advocates. It is little
understood in the medical community. Some doctors deny chronic Lyme exists. Have you
seen the film "under Our Skin'? There's an older and a newer version available through Amazon or maybe your local library has it. There are different levels of illness in the film but I feel
it's a good way to educate yourself or family about how some people have dealt with this.
Also, you are right. It is difficult to speak to people about this. Most do not understand.
I trust that as time goes by, you will meet people who do. Do you have family members who
know about what you're going through, if you don't mind my asking. Have you found a Lyme
doctor to treat you? Hang in there. You are not alone though it may feel like it. Be kind to
yourself. Keep us posted if you would and don't be afraid to ask question.s www.ilads.org they do list referrals to doctors there if you type in your zip code.
do list lyme literate doctors there
Rosi, I have not found any support groups around my area. I live in a very small town in the mountains of West Virginia so I would probably have to travel far to find such a group. Pretty ironic considering rural areas like mine are at the center of the epidemic. Also I have been very blessed to be surrounded by a loving and supportive family. I have a mother that's most definitely done everything in her power to find me the best treatment available. Every time I return home from school she has a new supplement or herbal remedy for me to try. I believe what's made the past few months so hard has been being away from that support system. I have been going to a lyme literate doctor for several years now so I have been getting proper treatment. However, I haven't been good about regularly taking many of the medicines and supplements lately. I've been very frustrated with taking the amount of medicine that I do and not feeling any relief in symptoms. I'm starting to see now that they may not have been making me feel any better, but they were preventing me from feeling how I do now. I've found that one of the best ways for me to get relief from this disease has been through hiking which I believe is a form of meditation in its own right. I'm much more paranoid about finding ticks on me when I come out of the woods now, though. I'm constantly searching for new hobbies that won't frustrate me with my current limitations. Its been a very rough adjustment period. I have not seen "Under Our Skin" so i'll have to look into it. Again, thank you everyone for responding and offering helpful and encouraging words. Every little bit of help goes a long way
I share your frustration. I know I did my best to recover, adopted a new diet and had so many lifestyle changes. But I'm still not well and it breaks my heart. I thought that if I did everything right, it would all work out well, I would get my health back. When it comes to Lyme, things can be tricky (to say the least).
Landm, you are so lucky to have a supportive mom. Please honor her everyday.
Both my parents are doctors- the type that doesn't believe in Lyme disease, which has made my journey considerably more difficult (and hurtful).
Nowadays, after six years of me being mostly bedridden and struggling, it is starting to dawn on them (my mom mostly, since she has been taking care of me) that Lyme disease is real, but she still alternates between that and going back to being skeptical.
Never, in one million years, would I have thought my life was going to be like this.
well truly amazing. A mom who actually gets you remedies. I can relate to the hiking part. I
went on a rather short hour hike today in the woods with a friend. Spring has come to where I
live. I don't use the sprays which a lot of people do, only rarely. But I now where long sleeves and socks. It felt so good to be out in nature. Doing what makes us feel good to me is so
important. Also, I was glad to hear you're working with a Lyme literate doctor. If you don't
mind my asking, have you tried the Buhner protocol? His herbs, Nutramedix? I can relate to
your despair over taking a lot of medications and not feeling better. It's a very tricky illness to
treat, and I've been there. Were you tested for heavy metals? There's so much to this but
trying to keep this short. Since I have tried many things, just to let you know it took some
eight years off and on. I'm still treating with a rife machine. Has your doctor ever mentioned
that, or have you heard of it? I also use an ionic foot bath. Since I had a lot of metal toxicity,
that has helped me. I know you're in school and so I don't want to overwhelm you, but maybe when you're out over the summer, you can look into some of these things. take care,