Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at .
I have tried several different medications for Lyme and am not getting any better. Do you think I just need to own up to the possibility that this is simply my reality and I should resign myself to it?
No! Treating tick-borne illness is complicated. It often takes a lot of trial and error to find the right treatment protocol, especially since what works for one patient might not work for another. When you’re not feeling well, it’s especially hard to be patient with the process. You just want to get better, and you don’t have the energy to keep waiting and trying things. I understand that. But difficult as it is, if you give up now, you will make your current situation your longterm reality. There were so many moments in my journey with Lyme disease and two other tick-borne illnesses—babesia and Ehrlichia—that I wanted to just throw in the towel. Thank goodness I didn’t, though. After many different medications over many years, I have been in remission for over a decade, and my life is better than I ever thought it could be.
I suggest keeping a daily log of your symptoms so that you can chart any small change, good or bad, and so you can also give a detailed report to your Lyme Literate Medical Doctor (LLMD), who may be able to tweak to your protocol to address any new issues. So many times my LLMD would say something like, “Oh, now that I’m hearing how brain fog is bothering you, I think we actually need to switch to an antibiotic that is better for neurological symptoms.” Or, “The symptoms you’re telling me about indicate inflammation, so I think we need to add an anti-inflammatory medication.” If this fine-tuning isn’t working, it may be time to seek a second opinionfrom a different LLMD. Sometimes it helps to have someone evaluate your case with fresh eyes. Be sure that you have been checked for all tick-borne diseases and are being adequately treated for any co-infections since a single tick bite can give you multiple infections.
Finally, it’s important to remember that medication is only part of the equation when treating tick-borne illnesses. Other factors like diet, sleep hygiene, and stress play a role in your body’s ability to heal. You may want to try complementary therapies such as integrative manual therapy or neurofeedback to help your medication work more effectively. There is always something new to try; never, ever settle!
What does the future look like for you?
This is a great follow-up to the last question. The answer is, I don’t really know, and that’s a good thing. When I was completely bedridden over a decade ago, the future looked bleak. I never thought I’d regain my independence. I wasn’t even sure if I’d ever be able to walk around the block again. But now I am living on my own, working, socializing, and exercising, and enjoying a full life.
My path to health wasn’t linear. After regaining some independence, I relapsed all the way back to the starting line. If the future looked bleak before, relapsemade me feel downright desperate. But I made it through, and have been in remission for over a decade, now that I know how to really manage my life in the context of these chronic illnesses.
Each year of this decade has been better than the last. There have been dips, of course: flare-ups of Lyme or babesia, acute illnesses like COVID-19 (link: https://globallymealliance.org/corona-with-a-twist-of-lyme/). But overall, I’ve made incredible strides since moving to Boston and starting graduate school in 2011. I can teach more classes now than I could after earning my M.F.A. in 2014. I can read for longer periods of time without getting neurologically overwhelmed. I bounce back faster when I push my body too far. I can ski more runs, swim more laps, paddle for more hours than I could a few years ago.
So, who knows how much more progress I will make in the next few years. Maybe I’ll be able to juggle even more work projects. Maybe I’ll be on a book tour. Maybe I’ll reduce some of my medications. Maybe I won’t need an afternoon nap. I can’t say for sure what the future holds, but I’m confident that more will be possible than I can currently imagine.
You mentioned that you can’t work a traditional full-time job, so you work a few part-time jobs that fit your schedule. How did you find those?
One of the hardest parts of living with chronic illnesses was accepting that I wasn’t going to be able to go back to the rigorous schedule I kept before I became ill. In order to maintain my health, I have to pace myself physically and neurologically. I also need to do adjunct therapies every week, which eat up time in my schedule, and I need to nap every afternoon. These needs—which I had to learn to see as just that, needs and not restrictions make it impossible for me to work a 9 to 5 job.
So I had to think outside of the box. What did I love to do, and how could I do that work on a flexible schedule? Instead of my old full-time high school teaching position, I now teach as an adjunct, at a creative writing center, and at colleges. My classes are scheduled in the mornings or the evenings, and class prep time is on my own. I was able to combine my passions for Lyme awareness/advocacy and writing into these weekly blog posts. I do one-on-one consulting work with writers, reviewing their work at home and then setting convenient meeting times (that’s even easier now, with meetings happening virtually).
The current climate is difficult because the economy was closed for so long, but it’s also a good time for patients like myself with unique scheduling needs because so many jobs have shifted to work-from-home. Therefore, you may now be able to find part-time work that offers a more flexible schedule than it previously did.
Moreover, I recently learned about Chronically Capable, an employment platform that aims to connect chronically ill patients with remote work-from-home jobs. I have no personal connection to or experience with this platform, but you might want to check it out. It’s important to think about what you can do and what skills you have to offer, instead of worrying about what you can’t do.
That said, working while chronically ill is not easy. You may not be able to cover all of your expenses. To address that Global Lyme Alliance has put together afinancial resource pagewhere you can find information on federal and state assistance programs and other resources.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at firstname.lastname@example.org.
Fantastically practical post.
From experience I can also attest to the importance of persistence with treatment. NEVER, EVER QUIT! You need to be as, if not more persistent than the organisms who have invaded your body.
While it’s true that there can be blow-back that causes issues that you may not be able to change, by and large, treatment ameliorates most if not all symptoms. Sometimes it’s as simple as finding the right drug. Other times it’s as simple as finding the right adjunctive therapies and supplements that take away the remaining symptoms after treatment.
For me personally those things include:
- Berberine: https://madisonarealymesupportgroup.com/2019/05/05/good-news-for-bartonella-patients-identification-of-fda-approved-drugs-with-higher-activity-than-current-front-line-drugs/
- LDN: https://madisonarealymesupportgroup.com/2016/12/18/ldn/
- Naturethroid: https://madisonarealymesupportgroup.com/2019/12/22/hormones-emotional-health/
- T3: https://madisonarealymesupportgroup.com/2019/10/26/5-thyroid-lies-your-endocrinologist-may-try-to-tell-you/
- Testosterone (with the addition of spironolactone for anti-androgenic effects of T): https://madisonarealymesupportgroup.com/2020/02/23/testosterone-replacement-in-chronic-pain-patients/
- Systemic Enzymes: https://madisonarealymesupportgroup.com/2018/03/05/how-proteolytic-enzymes-may-help-lyme-msids/
- Epsom salt baths: https://madisonarealymesupportgroup.com/2017/09/29/epsom-salts-for-lymemsids/
- Magnesium: https://madisonarealymesupportgroup.com/2018/01/16/magnesium-an-invisible-deficiency/
- Vitamin D: https://madisonarealymesupportgroup.com/2018/03/12/the-importance-of-vitamin-d-k-and-magnesium-for-lyme-msids-patients/
- Melatonin: https://madisonarealymesupportgroup.com/2019/03/14/melatonin-benefits-uses/
- A good multi vitamin
- Exercise: I love to walk outside and get sunlight. Do what you love!
- Healthywave mat (5 therapy multi wave): https://madisonarealymesupportgroup.com/2019/12/14/detoxing-with-infrared-saunas/. This mat which has PEMF, amethyst crystals, infrared heat, and red light, helps you detoxify and with pain. (I have no affiliation with the company and there are many other brands
Many of these supplements were determined after blood tests showed I was deficient; however, some were just found through trial and error. One word of warning: be careful you don’t try too many things simultaneously as you won’t be able to determine if a singular thing is helping you or not. Supplements cost money and you want to make sure it’s something you need because it’s an investment.