6. Many Lyme patients are not well enough to go to school or work. This doesn’t make them lazy or unmotivated. When you are so sick that even simple tasks like showering and preparing meals is extremely difficult, school and work is out of the question. This is something I’ve dealt with personally. I have had so many people tell me “You are so lucky! I wish I could stay home all day and sleep in and not go to work or school!” This literally makes me want to scream. I promise anyone who thinks it would be “fun” to be stuck at home chronically sick, without any obligations, is completely and totally wrong. Sure, maybe if you were feeling nothing more than a little under the weather, the first few weeks it would be nice to relax a bit. Then you’d probably go a little stir crazy. You’d be tired of boring daytime TV and hearing about everyone’s eventful days out in the real world. You’d want social interaction. You’d want to leave your house! Now pile on top of that the fact that most of the time when someone with Lyme is stuck at home they aren’t just feeling “slightly under the weather”. They are feeling like death. Sometimes, the simple task of breathing feels impossible. This is honestly not an exaggeration. This kind of sick doesn’t feel the same as a simple cold or flu. It feels like torture. Please do not minimize our suffering by calling us “lucky”. Nothing could be further from the truth.
7. There is no “magic bullet” or quick fix for late stage Lyme disease. You might be wondering why your loved one with chronic Lyme is STILL sick. I mean, it’s been months, years even! Why isn’t the treatment working? Shouldn’t they be cured by now? The truth is there is no easy answer for those of us who have late stage Lyme. Things might have been much different for us had we been diagnosed and given proper treatment at the beginning of our illness, but the Lyme has now had months or years to run rampant throughout our bodies and it has no intention of leaving quietly or without a fight. I know someone who was sick for 8 years before she was diagnosed with late stage Lyme. She had been in treatment for about 9 months and only saw minor improvements. But looking at the big picture, 9 months isn’t such a long time when it takes years for your body to get to this state. Another thing that comes into play here is no one treatment will work for everyone.
Each Lyme case is unique and will respond differently to different treatment options. Often times a Lyme patient will need to try several treatments, even several doctors or practitioners before they find one that allows them to make considerable gains. This process most definitely tests out patience. It might be testing yours, too. Again, it’s important to remember that however frustrated you are getting with the lack of progress a friend or family member has had, your loved one is likely feeling 100 times more frustrated, and even disappointed in themselves for “not being better yet”. Try to be patient and reassuring as staying hopeful and persevering when nothing seems to be working is difficult, but absolutely necessary.
8. Lyme disease treatment is extremely expensive, and likely not covered by insurance. The problem with Lyme disease is that standard treatment options are geared towards those that catch it within the first few weeks of symptoms. In most of these cases a few weeks or few months of antibiotics are all that is needed to regain health. These short term treatments are usually covered by insurance. When Lyme disease becomes late stage treatment is much more complicated. A few weeks of antibiotics will not even come close to curing the patient. Furthermore there will likely also need to be adjunctive treatments added to the patient’s protocol like vitamins, supplements and herbal remedies. When it comes to late stage Lyme we have to pull out all the stops to get better. Sometimes this means traveling to doctors on the other side of the continent, maybe even world. Or trying new cutting edge treatment options that are pricey and paid for out of pocket. This is a bit of a nightmare for us, as we already have the huge burden of failing health to carry, and don’t need the added stress of coming up with enough money to get better. If you want to help your friend, offer to host a bake sale or fundraiser to help raise money for their treatments, or just be there to listen. It will probably mean more to them than you know.