2 years since Lyme diagnosis and what I learned
Treatment learnings
- Some treatments are easier and more effective person-by-person. Dapsone for example was hard on me but I saw clear results. What worked for someone else, may not work for you.
- Abruptly stopping medications may cause bad flare-ups. Talk to your doctor before you do this and come up with a plan.
- You may be more responsive to some medications than others. Some medications may be toxic for you. Genetic tests (whole exome) can provide a lot of information on this.
- Commercial supplements may not always disclose how much of an active ingredient they have. You may literally be consuming mostly cellulose. Be an informed purchaser.
Work learnings
- Disability accommodations may make a huge difference in your ability to work.Some possible accommodations that may help you are documented here: https://askjan.org/disabilities/Lyme-Disease.cfm .
- People may not always be empathetic, and may put you in situations that endanger your health without realizing. I learned that being subtle in these situations does NOT work. You may have to be more dramatic than you would like in order to get the point across.
- Some days with Lyme at work will just be garbage days. For me, just getting something done, literally anything, can turn those garbage days around a little.
- It is hard for me to be proud of my work when I can't remember doing it because of brain fog. This is something I am still working on.
Social learnings
- For me, I have learned that people will not always treat me with the same level of empathy and care as they ask me to treat them.
- Social stresses for me can have a similar impact to physical stresses, and can trigger flare ups.
- Finding friends who get it is important.
- Friendships for me need to have a deeper foundation than just having fun together, or else those friendships will evaporate quickly when you are in a flare phase.
Miscellaneous
- For me, I always need to take prophylactic antibiotics and request antimicrobial gels during dental procedures (even deep cleanings). My immune system cannot handle dental procedures.
- Lyme and Bartonella can have impacts on mental health. Plenty of articles and even research papers out there on this.
- I feel my deficits clearly, every day I don't live up to my expectations feels like a failure, and the suffering Lyme causes can be quiet and invisible to others. I don't want to change my expectations or dim my hope, I just keep on keeping on with the wish that better days are ahead. Everyone manages their illness differently. But for me, the hope that maybe tomorrow I will wake up different, better, and ready to go keeps me making better decisions, taking care of myself, and moving forward.