Tag Archives: lyme protocol

No Set Protocol

by Jennifer Crystal

WHY ISN’T THERE A SET TREATMENT PROTOCOL FOR LYME DISEASE?

Patients often write asking how I fought off Lyme and two other tick-borne diseases. I understand why they ask. When you read that someone is doing well, you want to know how they got there. Im always curious about the techniques others patients have used, too, and am eager to learn about the latest treatment options. I love connecting with other Lyme warriors. But I cant give them my medical protocol.

Its not because I dont want to. It’s not because Im not a doctor and cant give medical advice. Its because doing so truly wouldnt really help them. Over 427,000 people are diagnosed with Lyme disease each year, and every single one of those cases is different. Not even two of them are alike. Medication protocols must be individually tailored for each individual patient by a Lyme Literate Medical Doctor (LLMD).

Why is this the case? There are set protocols, or at least variations on a theme, for other illnesses like bronchitis and certain cancers. It would seem reasonable to assume that the same would hold true for Lyme, but it doesn’t. For starters, spirochetes (Lyme bacteria) attack people in any number of ways. A few examples: some people may have multi-system symptoms, while others may have mostly joint aches and pains; still another may have mainly psychiatric manifestations. And I’m barely scratching the surface when it comes to how variable Lyme’s effects can be.

Different symptoms are best treated with different families of antibiotics or combinations thereof. Some people do well with an anti-inflammatory that works in conjunction with antibiotics, and some do not. Some people tolerate oral antibiotics just fine, while others develop gastro-intestinal problems and do better on intravenous or intramuscular antibiotics. Again, the family of antibiotics that combats one patients symptoms might not work for another at all.

Some people react quickly to treatment; for others it takes a long time and several Herxheimer reactions before they start to notice improvement. Response time can depend on a variety of factors such as whether you have other illnesses unrelated to Lyme (for example, I also have chronic Epstein-Barr virus) and one’s individual immune function. In addition to response time, other factors come into play such as: how long did the patient go undiagnosed, does he or she have tick-borne co-infections (as I do) that can complicate treatment, and has infection crossed the blood-brain barrier. Once an LLMD gets a full picture of a patients medical history, they often must try alternating combinations of drugs before they land on what works.

And heres another wrinkle: what works well for one week or one month might not work so well the next. 

That’s another reason I can’t talk about my protocol. It’s because I haven’t had just one but many. If there were a single magic cocktail that gave me steady improvement, Id gladly share it. But there isn’t. I started on oral antibiotics for six weeks. Then I switched to intravenous antibiotics for a year. Then I went back on different oral antibiotics for another few months before getting well enough to go off medication entirely. And then, three months after that period of remission, I relapsed entirely, and had to start over with another combination of meds altogether. 

In addition to antibiotics, Ive also taken different anti-malarial medications at times to combat one of my co-infections, babesia. Ive switched up sleep medications, anti-depressants, and nutritional supplements. Ive tried various homeopathic remedies. Ive done adjunct therapies like integrative manual therapy (which involves neurofascial processing and cranial sacral therapy), neurofeedback (a non-invasive technique that helps with sleep), and traditional physical therapy. Ive done talk therapy for different periods of time at different points in my journey.

The only thing that has stayed exactly the same for over a decade is my diet: no gluten, sugar, alcohol, or caffeine. But even that has gotten slightly more lax at times. I now eat small amounts of dark chocolate, when for many years I didnt touch the stuff at all.

So yes, as Ive got better and better over the course of more than a decade, I have settled into a certain combination of treatments and therapies that have worked well for me, but that was built on the foundation of treatments I did in the past. Why, even my current protocol isnt foolproof. Just this past spring, I had a flare-up that required me to tweak my medications and supplements. Even a patient in long-term remission must change her protocol based on waxing and waning symptoms. I will continue to need to do so as needed, likely for the rest of my life or until a cure is found.

But that doesnt mean you will need to be on medication for the rest of your life or until a cure is found. Depending on the severity of your case, you may only need a short course of treatment. Let my story of eventual remission inspire you, but dont let it scare you. As long as youre in the hands of a LLMD, youll eventually figure out the treatment plan that works for you. In the meantime, please know that I understand your frustrations, fears, and physical pain, and I am cheering you on!


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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 [email protected].

It’s Not All or Nothing

by Jennifer Crystal

Suffering from a chronic illness, like Lyme disease, can make you feel like you are missing out this holiday season because you can’t attend a party or visit with a friend.  But it doesn’t have to be all or nothing. 

 

There’s a new movie out called Manchester by the Sea that I’d really like to see. When I mentioned this idea to a friend, she said, “That might be a tough movie for you.” She didn’t mean the content. She meant that it was filmed in a way that you always feel like you’re watching from a character’s shoulder, creating an intense visual effect that she worried might rile up my neurological symptoms. Furthermore, she cautioned there are a lot of driving scenes that could cause motion sickness.

“But you still should try it,” she said. “Just sit in the back, so you have the best peripheral vision possible, and leave after ten minutes if it’s too much for you.”

In the past, I never would have accepted this advice. When I was really sick, I didn’t have the energy to sit through an entire film, so I thought, why go? Another friend helped me to reframe that thinking. When I told him about all the things I wouldn’t or couldn’t do, he asked, “Does it have to be all or nothing?”

“What’s the point of paying for ten minutes of a movie, only to have to get up and leave?” I countered. In those days especially, it took a lot of energy for me to get dressed, wrap my PICC line under a sleeve, and drive to a theater. My hourglass ran out so quickly that I didn’t want to waste energy unless I knew for sure it would be worth it.

My friend just wanted me to see that while I was waiting to get better, I was missing out on a lot of good things in life. I had this vision of getting totally well—of having my energy completely back—and then going back to the activities I’d once enjoyed at full-tilt. I didn’t want to ski on the bunny hill, just to say I did it; I wanted to get back to deep powder and moguls. I didn’t want to go to a party looking tired; I wanted to be the life of the party.

The thing about Lyme, though, is we never know if we’re going to get that life back. It all depends on how long we went undiagnosed, how long we’ve been sick, whether we have co-infections, whether infections have crossed the blood-brain barrier, and how we respond to treatment. Most frustrating of all is that the answer to every one of those questions is different for each patient. There is no set protocol or prognosis for tick-borne disease. We don’t know when or if or to what extent our symptoms will improve. So instead of waiting for the big moment of “all better!,” we need to celebrate the little victories, and adjust our lives accordingly.

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This means instead of waiting to be the life of the holiday party, we should consider attending for just half an hour. Instead of waiting to see an entire holiday concert, we should commit to only going to the first half. Instead of lamenting how tired we might feel during that party or how weird it might be to miss half a show, we can reframe our thinking to, “It’ll be great to say hello to friends who I haven’t seen in awhile” or, “It’ll be nice to hear even a little bit of music.” Like most things in life, it’s all a matter of perspective.

Of course, this glass-half-full mentality doesn’t always work. Sometimes an event or effort really is too much for us, causing setbacks that make us feel like the glass has dropped and shattered all over the floor. I remember going to a piano concert at the local library one afternoon during my convalescence. I had just woken up from a nap, and was feeling sluggish and out of sorts. My nerves were frayed, which I quickly realized when the concert began and I looked around to see if other attendants found it to be as loud and grating as I did. Everyone around me—most at least three times my age—seemed to be enjoying the concert just fine. My sensitivity to sound was so hyper-engaged during what was usually a hard time of day for me that the classical piano sounded like crashing heavy metal. I had to leave.

That experience was discouraging, but when I told my friend about it, he didn’t let me give up. He validated why it had been particularly hard and then encouraged me to try attending events in the morning, which was and still is a much better time of day for me. Since then, I’ve learned to make similar choices and adjustments that allow me to do some fun things—even if only in part—that I might otherwise have given up on entirely. Movies in the theater can still be hard on my brain, because the previews are often loud and fast-paced, causing sensory overload before the feature even begins. So I’ve learned to wait out previews in the lobby. I look down or close my eyes when the action on the screen is flashing or violent. I leave parties half an hour before I hit  the physical or neurological wall, so that I don’t melt down while there.

When you’re bedridden, going to a movie or a party might be out of the question. Even in that state, though, your life still doesn’t have to be all or nothing. Is your family downstairs decorating the Christmas tree? Why not go hang one ornament to participate at all, instead of missing out entirely? Are your friends having a Hanukkah party? Why not go just to see them light the menorah, even if you can’t stay to eat latkes and play dreidel? Participating in even the smallest bits of life while suffering helps us get through bad periods, and reminds us of what we can do, no matter how sick we are. And that, to be sure, is better than nothing.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected].