Madison Area Lyme Support Group

Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

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 lymewarriorjennifercrystal@gmail.com.

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**Comment**

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/
• MSM:https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/
• 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.

by Jennifer Crystal

…we grow up thinking of doctors as all-knowing. Whatever ‘the doctor’ said—be it the Primary Care Physician, the family doctor, or the ER doctor—was once deemed absolute.

This doesn’t have to be the case.

When I was originally diagnosed with Lyme disease and two co-infections—babesia and Ehrlichia—I took oral antibiotics for six weeks. They didn’t work as effectively as my doctor had hoped, so he suggested I switch to intravenous antibiotics through a PICC line. I had been on the PICC line successfully for about seven months when one afternoon I was suddenly gripped with searing abdominal pain.

I was eating a banana with peanut butter when I felt a stabbing, wrenching ache just under my right rib cage. Dropping my snack, I clutched my side, grew dizzy, and started to sweat. Trying to escape the pain, I ran into the next room, where I collapsed on the floor, writhing and screaming. 

Maybe it’s from the PICC line,” exclaimed my worried mother. 

I shook my head. The attack felt too localized to be related to the PICC line, which was in my left arm.

Maybe it’s appendicitis,” she suggested.

Again, I shook my head. The appendix is lower,” I gasped. This pain is right under the rib cage.”

We drove to the ER. I screamed the whole way, feeling like someone was stabbing me with a knife over and over. 

The ER doctor did a scan, read it, and diagnosed constipation.

I looked at him quizzically. I have a lot of medical issues,” I said, “but constipation isn’t one of them. This pain is far more severe than constipation.”

He shrugged. Well, your scan shows a lot of stool in your colon, so that’s what it is.”

Turns out, what this doctor saw wasn’t stool, it was gallstones. He had read the scan backward, mixing up the colon with the gallbladder. Thankfully, my Lyme Literate Medical Doctor (LLMD) realized what was really going on. The intravenous antibiotics had caused gallstones, a rare side effect of the particular medication I was taking. I was having a gallbladder attack, brought on by eating a fatty snack. I went to another hospital, where I had emergency gallbladder removal.

My LLMD and my surgeon knew the original ER doctor was wrong. So did I. I didn’t know I had gallstones, but I knew I wasn’t suffering from constipation. I knew that what was going on in my body was different—more severe—than what the ER doctor was telling me, and I spoke up.

Patients with tick-borne diseases often need to do this. It can take years for some patients even to get diagnosed, because the doctors they’re seeing aren’t well-versed in tick-borne illnesses and don’t put together what are often nebulous symptoms. Moreover, because diagnostic tests are so faulty, some patients get negative results and are told they are fine. Even once diagnosed, other doctors treating patients for acute issues may not understand the complexities of underlying tick-borne infections, and may dismiss them as irrelevant.

This is when Lyme patients need to advocate for themselves. Those suffering from Lyme and other tick-borne illnesses need to explain their symptoms or diagnoses, push for tests, and reject any doctor who doesn’t have an answer for them and move on to one who does. This last action can be the hardest of all, because we grow up thinking of doctors as all-knowing. Whatever “the doctor” said—be it the Primary Care Physician, the family doctor, or the ER doctor—was once deemed absolute.

This doesn’t have to be the case.

There are many good doctors, and often what they say is correct. But when you feel unheard or invalidated, or simply have a gut feeling that something more is going on with your body, you have a responsibility to find a different doctor. This isn’t always easy to do when you’re sick and tired and have to deal with insurance. But it’s worth it. Had I listened to the ER doctor and accepted his diagnosis of constipation, I might have eventually suffered a fatal gallbladder attack. Had I stopped with the first doctor I saw with flu-like symptoms back in 1997, I might still be bedridden, never accurately diagnosed with tick-borne illnesses. 

No one knows your body better than you. When you’re a patient, you become so in tune with every little change in your body, and that’s a good thing. I can tell when my temperature is 98.4 and I can tell when it’s 99.1; the thermometer just confirms what I already know. I know the difference between what it feels like when I’m getting sick, and what it feels like when I’m just run down. You likely do, too. It can be easy to be swayed by other people’s opinions. They’re well-meaning when they say, Maybe you have the flu,” or maybe it’s the weather.” But only you know because you can feel exactly what’s going on in your body. 

Being thus attuned puts Lyme patients and those with chronic illnesses ahead of the learning curve during the current COVID-19 pandemic. Suddenly everyone is aware of every cough, sniffle, or temperature fluctuation. Lyme patients already know what’s typical for them—what signifies baseline health, what signifies a Lyme flare, and what signifies a different acute illness—and that is especially helpful at a time when medical facilities are overwhelmed as they are now and many appointments are being conducted via telehealth. We can notice important changes in our bodies and explain them to our doctors.

So trust your instincts. It’s okay to speak up for what you believe you need. It’s okay to seek a second, third, or even twelfth opinion. Your body is counting on you to give it the best possible care, and only you know what that feels like. 

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 lymewarriorjennifercrystal@gmail.com