Tag Archives: lyme Q&A

lyme warrior_lyme Q&A

Dear Lyme Warrior…Help!

By Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Below are her responses to a few recently received questions. Do you have a question for Jennifer? If so, email her at [email protected].

When a patient has a Herxheimer reaction, does she experience whatever symptoms are specific to her case, but enhanced? I have heart palpitations and headaches.

This is great question, coming on the heels of my recent column, What Does it Mean to Herx? As I explained, a Herxheimer reaction is when antibiotics kill off more Lyme bacteria faster than the body can eliminate, so there is a lag. This makes the patient feel worse before she feels better. For me, this resulted in increased sweating and elimination, as my body sought to detox itself. It also meant an increase of symptoms I had otherwise experienced at a lesser degree. I was extremely fatigued, had severe migraines, and my joints ached.

I never had a specific symptom like heart palpitations during a Herxheimer reaction. But, yes, on the whole it would seem that herxes bring out exacerbated versions of each of our own symptoms, since every Lyme patient experiences the disease differently. Some have heart issues, some have gastrointestinal issues, some neurological impairment while others have impairments which are strictly physical. Because spirochetes like to squirrel themselves away from antibiotics, getting deeper into joints and tissues and sometimes crossing the blood-brain barrier, it’s possible that new symptoms can crop up.

In my experience, this is not the result of a Herxheimer reaction, but rather a result of spirochetes growing and spreading. A Herxheimer is a reaction to dead bacteria in the body. Entirely new symptoms are more likely to be signs of live bacteria. If you’re suddenly experiencing new symptoms that do not seem to be part of a typical Herxheimer reaction, it’s important to check with your Lyme-Literate Medical Doctor (LLMD) to see if you might need different or additional treatment.

Have you dealt with Lyme depression? How did you motivate yourself when you had to go through a bout of this?

Yes. For many years I fought against the fact that Lyme made me depressed. But because so many people—including some doctors— told me that I wasn’t sickand that my symptoms were all in my head, I thought that if I showed any signs of depression, I’d simply prove those people right.

What I ultimately came to realize is that my depression was an effect of my tick-borne illnesses, not the cause. I was depressed because I was physically sick. I wasn’t physically sick because I was depressed. That’s an important distinction, and once you recognize it, dealing with your depression becomes easier to accept as part of a physical and neurological illness that affects you emotionally and mentally. It’s completely natural for someone who is physically sick to feel mentally depressed. When I grew sick, I quit my teaching job in Colorado and left the the skiing life I loved, I moved back with my family in Connecticut. Who wouldn’t be sad about that? Who wouldn’t get downhearted, anxious, and fearful about being bedridden?

Spirochetes running rampant in your brain, and even the side-effects of certain medications, can induce symptoms of depression. Your depression could be both situational and chemical.  It’s important to talk to your LLMD about your symptoms. It may even make sense for you to see a psychiatrist or a talk therapist, or both; there’s absolutely no shame in that. It’s all part of healing your whole self from tick-borne illness. I needed anti-depressant medication for a time and talk therapy as part of my overall medical plan. They wouldn’t have worked alone, since I was fighting a physical disease that needed its own treatment, but they were an important adjunct therapy.

In addition to seeking medical support, there are a few things that helped motivate me during a bout of Lyme-related depression. The first was to recognize that this, too, shall pass—even when I was feeling this way for weeks or months, even when it seemed like there wasno foreseeable end in sight to my illness. I promise you it does get better. In the  “Writing to Heal”classI teach, I draw a spiral on the board to remind students that grief—like recovery—is a spiraling process. It’s not linear. You go through some good periods, then spiral downward a bit, then buoy back to the surface again then repeat the spiral. It’s a tedious process, granted,  but as a whole, the spiral is always upward and forward away from illness and toward health. When you go through a bout of Lyme depression, you are not back to square one. You are somewhere further along that arc towards health, just currently at one of its low points. You have already come this far and you have to remain confident and keep moving forward, knowing that you will slowly get better.

To help motivate yourself, I recommend talking to supportive friends, getting lots of hugs from them, and have them tell you some funny stories. In other words, don’t lose  your sense of humor; (laughter can be the best medicine!). Moreover, journaling not just about how you feel but about what you hope your future will look like; doing simple arts and crafts like coloring or scrapbooking; listening to classical music; and treating yourself to something to like a bubble bath or a pedicure. Be gentle with yourself!


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

[email protected]

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her replies to questions she has recently received. Do you have a question for Jennifer? If so, email her.

How do you explain to someone that one day you’re so tired and your body aches, and the next day you’re fine?

This is a question with which patients with chronic illness wrestle, whether they have tick-borne disease or another condition that follows a relapsing pattern. With such illnesses, symptoms ebb and flow, even when you’re under treatment. For example, antibiotics can kill bacteria faster than your body can eliminate them, thus causing a back up of toxins known as a Jarisch-Herxheimer reaction. Simply put, this makes you feel worse before better. Once the toxins are eliminated, you go through a period of feeling better, which can last a couple days or a couple weeks, before the process starts over again. It’s very hard for most people who aren’t Lyme literate to understand this. Their understanding of illness is that it is linear: you get sick, you take medicine, and you slowly start to improve until you’re better.

Such is the case for bronchitis or a sinus infection, but not for tick-borne illnesses. I think healing from Lyme is akin to walking up a spiral staircase. You will go around and around. Sometimes you’ll stop on a landing and be steady for awhile. Then you’ll continue climbing, spiraling through various symptoms. You may even slip backwards, because the staircase is steep. But ultimately, after some delay, you make your way to the top, which is relative wellness. Perhaps you can give the naysayers in your life this image to help them understand what it means to have a relapsing illness.

If they don’t understand, find other people who do. Some people in your life just aren’t going to get it, and you don’t have the energy to argue with them; you need to conserve that energy on your health. This is especially hard when the people who don’t understand are the people you need the most—family or close friends. Some may come around eventually; some may not. Focus on the friends and support group members who do validate how you feel. That’s the medicine you really need!

Is it okay that I’ve had symptoms for two years?

There is no “okay” or “normal” with Lyme and other tick-borne diseases. No two individual (cases are alike. Someone who finds an engorged tick and is treated immediately might only have symptoms for a few weeks. Someone like me who went undiagnosed for eight years might be symptomatic through several years of treatment, with lingering, milder symptoms afterwards. Someone who is never properly diagnosed and treated will have symptoms their whole life.

I can tell you that longer-term cases of Lyme disease—those that fall under Stage 2 or Stage 3 of the disease can take years to treat. Spirochetes are smart. They’ve evolved to spiral away from antibiotics, requiring intense, long-term treatment to treat them. Tick-borne co-infections often complicate and lengthen the treatment period, since each pathogen requires a different kind of treatment. Another variable is the strength of a patient’s immune system and how well he or she responds to medication.

If you are under the care of a Lyme Literate Medical Doctor (LLMD) and your symptoms have persisted but improved even a bit over the last two years, then yes, I’d say that sounds pretty typical. If you are not yet seeing an LLMD, GLA can help you find one. Lyme is a bacterial infection that won’t go away on its own. If you’ve received treatment and are still symptomatic, you may need additional treatment. Only an LLMD can determine what’s best for your specific case.

When you said that it felt like your arms and legs were “jumping,” was it like twitching?  

Yes, that would be an accurate description. I described this feeling as part of air hunger, when my arms and legs would sometimes feel like they were having a panic attack. What I meant by that was that my limbs felt like they were gasping for air, the same way my lungs would. Due to neurological upset caused by spirochetes in my brain, my muscles would also twitch (sometimes, when I am especially tired, they still do). It can be a mild twitching, or it can be more of a focal seizure, where that whole area of my body jerks against the bed. For me, these twitches can be an indication that I need Vitamin A1, but only your LLMD can determine the cause and treatment of yours.


jennifer crystal

Opinions 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]

lyme warrior_lyme Q&A

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her replies to questions she has recently received. Do you have a question for Jennifer? If so, email her at [email protected].

How do you establish balance in your life?

This is a tough one when you’re dealing with chronic illness. When you’re in an acute phase, your life revolves around taking medications, sleeping, and going to doctor’s appointments. When you’re well enough to get back to living but still have limitations, balance can be difficult to achieve. The temptation is either to deny your illness entirely, or not to allow yourself any down time because of your illness, and I know from personal experience that neither extreme works.

When you start to feel better, all you want to do is jump out of bed and do all of the activities you used to do before your illness. As soon as I got my PICC line out, I wanted to move out of my parents’ house, where I’d been convalescing, and start working, exercising, traveling, and seeing friends. These desires are natural, but they are also a chronic Lyme patient’s Achilles heel, because doing too much at once will send you right back to bed, which is not where you or I want to be. For me, taking on too much while ignoring and/or not understanding how to manage my limitations, caused a complete relapse. I ultimately learned that it’s better to dip your toe in the water slowly than dive in head first. The second time I battled my illnesses into remission, I started some volunteering before starting to work part-time. I went out for brief lunches once a week or so, but gave myself recovery time in between the outings; and I worked very slowly at physical therapy. Even now, when I’m so much healthier, I maintain balance by living my life within the context of my chronic illness.

Another pitfall chronic Lyme patients, including those with tick-borne co-infections,  fall into is not giving themselves any time “off”. I used to think, “Well, if I can only work part-time, then I need to put every once of energy I have into that work, to show that I’m  earning my keep.” But that led to burn out. It’s actually very important to take the time to simply relax, expending your energy on simple pleasures like watching a silly TV show or perusing a light magazine. So the best way to establish balance in your life is to first give yourself permission to have it!

Do you know any cases where someone became unfit to work due to taking too much time off? I worry that by not using my brain, I’ll lose my capacity for work.

This is an understandable concern, but you have to remember that your body is working very hard to heal from tick borne illness. I used to worry that my body and brain would succumb to entropy, but even after years of illness, they did not. My mind did not turn to mush, despite brain fog, syntax errors, mental confusion, and sleep disturbances. My body did not wither away, even though I lost and had to regain most of my muscle. But I did ultimately restore both my physical and mental faculties, and I don’t think I could have done so if I had not given myself the requisite time needed to recover.

Your brain is working right now, fighting bacteria. Don’t push it before its ready. Whenever I tried to do that, I paid the price. My brain fog would only worsen, and I would only get more frustrated and discouraged. When I tried to exercise before my body was ready, the spirochetes only increased their activity, making me feel worse. Lyme is not a “just push through it” disease like, say, some types of flu. It’s much more serious and requires a sensible long-term view when it comes to recovery.

That said, do allow yourself to slowly regain your capabilities when you’re ready. When I was too tired to complete articles or essays, a friend of mine would play short writing games with me. He’d make up rules such as, “Send me two sentences using only three syllable words,” or, “Make up a funny story about a dog and tell it to me using only short sentences.” These activities helped me to pass the time, but also allowed me to use the language center of my brain without overworking it. Eventually, I was able to build back up to my original capacity. Though I remain heedful of overstimulation, now I can read and write articles, edit student essays, and write this column—plus work on my book. I wouldn’t have been able to do any of that had I forced my body and brain to work before they were ready.

Can you have Lyme without co-infections?

Yes, and vice-versa. This is one of the most important and misunderstood facts about tick- borne illnesses. Ticks can carry multiple infections, not only Lyme disease but others as well. I personally tested positive for Lyme, babesia, and bartonella, and they all required different treatments. Had I only been tested or treated for Lyme, I would have only been fighting half the battle and, what’s most important, I would in all likelihood still be sick.

On the flip side, it’s also possible for a person to have a co-infection, but not Lyme disease. I know someone who had only ehrlichia, and another person who had only babesia. It’s very important to be aware of the symptoms of each-tick borne illness and, if you have any of the symptoms or have a tick bite or rash, that you visit a Lyme Literate Medical Doctor who can accurately diagnose and treat you.


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]

lyme warrior_lyme Q&A

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she has recently received. Do you have a question for Jennifer? Email her at [email protected].

Q. You once mentioned that a scan helped doctors to learn that you weren’t getting enough oxygen to the left side of your brain. What type of scan was it? And how did doctors know the poor oxygenation was caused by Babesia and not by another tick- borne illness?

A. I have had both MRIs and SPECT scans. It was the SPECT scan that allowed my doctor to specifically see that the left side of my brain was not getting enough oxygen. That SPECT scan was done 11 years ago; you may want to talk to your doctor to see if that is still the most accurate scan you can get.

As I described in my Air Hunger post, Babesia is a parasite that feeds on the oxygen in the red blood cells, depriving the patient of much-needed oxygen. In my case, my doctor knew the infection had flared up again because of the scan. I was also having symptoms of babesia including air hunger, post-exertional fatigue, and hypoglycemia. It’s important that you find a Lyme Literate Medical Doctor (LLMD) who can accurately diagnose and treat you, and who will know your case if and when you relapse.

Q. How long does a Herxheimer reaction last, and is there anything that will help speed up the process or lessen its effects?

A. A Jarish-Herxheimer reaction commonly referred to as a “Herx”, is when bacteria dies off faster than the body can eliminate them, making the patient feel worse before they feel better. This can seem counter-intuitive because when you take medication for an infection, you expect to feel better. But when you’re killing off a lot of spirochetes—especially if you’ve been sick for a long time—a Herxheimer reaction is natural and can be viewed as a good sign that the medication is working.

That said, a Herx can feel awful. Your fatigue is worse, your body feels laden with toxins, and you can barely move from bed except to run to the bathroom. The actual elimination of dead bacteria can be surprisingly intense; the first time I had a Herxheimer reaction, I couldn’t believe how often I was in the bathroom, or what was coming out of me. I can only describe it as “toxic bodily waste.”

For me, Herxheimer reactions tended to last up to a week or two, and then pass. Sometimes they were just a couple days long. It all depends on the patient, though. I know patients who have Herxed for a month or more. No matter how intense your Herxheimer reactions are, though, there are a few things you can do to lessen your suffering. These techniques worked for me:

  • Pulse your medications: Some doctors will have their patients take their antibiotics for a certain number of days or weeks, or then have them stop for a while to allow the body time to eliminate the dead bacteria. Other doctors switch up medications at certain intervals. Personally, I took single day breaks from medication when the Herxheimer reactions were especially intense.
  • Figure out which of your medications is causing the Herxheimer reaction. Herxheimer reactions can be caused by herbal supplements, not just by antibiotics or antimalarial medication. I find it’s best to only change one thing at a time in my own protocol; if I increase a homeopathic drop, I wait awhile to see how that goes before altering the dosage on a medication.
  • Eat foods that are known to help you detox: For me, lemon and onion work well; other patients use apple cider vinegar, or even intravenous Vitamin C, though this last option did not work well for me. Remember, everyone is different and you and your doctor need to figure out what’s best for you.
  • Drink lots of water to help flush your system.
  • Sweat: Those pouring night sweats are annoying, especially when you’re changing pajamas and sheets several times a night, but it means the infection is leaving your body. Some people find that light exercise helps. For me, though, exercise only made me feel worse. Others use infrared saunas to increase sweating. Personally, I can not handle the intense heat.
  • Electrolytes: Because you’re sweating so much, your electrolytes may become depleted. I find it helps to drink an electrolyte-infused beverage (try ones that are just water-based, without added sugar) to keep my sodium and potassium levels balanced. Sweating out spirochetes or parasites isn’t all that different from doing an intense cardiovascular workout, so you should consider how the electrolyte water is helping you to replenish your body.
  • Lymphatic drainage: When I’m herxing, bacteria tends to back up in my head, and my integrative manual therapist does lymphatic drainage and cranial sacral therapy to help open up flow from my brain. He also does neurofascial processing on organs that help the body detox, such as the liver. Note: avoid deep tissue massage at these times since it can hold toxins deeper in your body, making you feel worse.

These are only the detox methods that have worked best for me. There are many others recommended by both patients and doctors. At the 2017 International Lyme and Associated Diseases Society conference in Boston, I heard about curcumin, also known as turmeric, a member of the ginger family that acts as an anti-inflammatory and which has many uses to help mitigate Herxheimer reactions. Talk with your LLMD, and with other patients, about what works best for you.

Q. I know you’ve explained that you can’t give medical advice, but can you please tell me what your protocol was?

A. When you hear a story of someone in remission, it’s natural to want to know what they did to get there. But as I’ve explained in previous posts, telling you my specific protocol (which is ever-changing) is not the point, because every single case of tick-borne illness is different.  Even if your symptoms are similar to mine, our individual cases are guaranteed to be different in terms of how long we were sick, how long we went undiagnosed, whether our infections spread to the central nervous system, where else in the body the infections have spread, whether we have co-infections (and which particular ones), and, most importantly, how we responded to any given treatment. An antibiotic that worked well for me might not work at all for you. My protocol is tailored to my specific case, and yours needs to be, too. You and your LLMD may want to check out Dr. Richard Horowitz’s books Why Can’t I Get Better? and How Can I Get Better? Both books outline specific treatments for specific combinations of tick-borne illnesses.

In closing, let me say that in the past I’ve written about the big picture of what has helped me the most: a combination of medication and homeopathic supplements; nutritional supplements; a gluten-free, sugar-free diet; cognitive behavioral therapy; integrative manual therapy; talk therapy; and neurofeedback. I recommend a holistic or integrative approach that encompasses both Western and Eastern modalities as well as adjunct therapies. I recommend lots of rest and self-care. I recommend seeking out a helpful support system of concerned individuals. Unfortunately, I cannot recommend specific medications, and I hope you will understand that I withhold that information in the hope that you will find the right protocol fly working with your LLMD.


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]

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

EVERY COUPLE MONTHS, LYME WARRIOR JENNIFER CRYSTAL DEVOTES A COLUMN TO ANSWERING YOUR QUESTIONS. HERE ARE HER ANSWERS TO QUESTIONS SHE IS FREQUENTLY ASKED.

 

Do you have a question for Jennifer? Email her at [email protected].

Since blood tests aren’t 100%, how can you be definitive you have Lyme?

Lyme disease is difficult to diagnose for exactly the reason you describe: there is not yet a reliable test. This is because current tests look for antibodies for Lyme in your blood, rather than for the bacteria itself. Western Blot tests from labs like Igenex are more sensitive, looking for a larger spectrum of bands than the standard CDC test, but Western Blot tests are still not fool proof. The best way to know if you have Lyme is to get a clinical diagnosis by a Lyme-Literate Medical Doctor (LLMD), who will look at your complete medical history and symptoms.

In our society we tend to think tests are the only way to diagnose disease, but it’s important to remember that doctors diagnoses lots of illnesses—like colds, sinus infections, and the flu—without tests. We trust their expertise in those areas and we have to do the same with Lyme, as long as the doctor is Lyme literate. My CDC tests did come back positive—for Lyme and co-infections babesia, and ehrlichia—but it was my doctor’s clinical expertise that made me sure of my diagnosis.

The other way you can tell you if really have Lyme is based on how you react to treatment. If you experience a Jarisch-Herxheimer reaction, when you feel worse before you feel better because the antibiotics are killing the Lyme bacteria faster than your body can eliminate them, then you know the spirochetes really are there.

The CDC states that laboratory tests are “helpful” in diagnosing Lyme, but not definitive. The best thing you can do is find an LLMD whom you trust. Had I not found an LLMD to diagnose and treated me accurately, I would still be bedridden.

 

I had Lyme years ago, and now I think I have a new infection. If my blood tests come back positive, how will I know if that’s an old or new infection?

Blood tests look for two different types of antibodies: Immunoglobulin G (IgG) and Immunoglobulin M (IgM). IgG are longer-term antibodies that are produced later and stay in your system after you’ve had an infection. If you had chicken pox as a child, you still have IgG antibodies for chicken pox. IgM antibodies are produced more immediately, and represent a new, acute infection. Since you had Lyme before, you will still have IgG antibodies for it. If you show IgM antibodies, however, that’s a sign of a new infection. Your LLMD will be able to differentiate between the two.

That said, after a tick bite, it can take your body awhile to build up enough antibodies to produce a positive blood test. For that reason and for the reasons outlined in question 1, it’s important for you to see an LLMD who can evaluate whether your symptoms are a sign of new or recurring infection, and also whether you have new or recurring co-infections.

 

What helps most with low blood sugar?

Lyme disease can impair adrenal function, which in turn can cause reactive hypoglycemia (blood sugar swings). This is also a common symptom of babesia. Hypoglycemia was one of the first symptoms I experienced. Shortly after finding a strange red rash on my forearm, I fainted one day due to low blood sugar. This had never happened to me before. I continued to have low blood reactions at inopportune moments for years. Though doctors confirmed I was hypoglycemic, they never looked into why I’d suddenly developed it. Had they, my tick borne illnesses might have been diagnosed much earlier.

Now that I have an accurate diagnosis and have been treated, my hypoglycemia is better, but not gone. There are a few things that have helped me the most. The first is sticking to a gluten-free, sugar-free diet. This has helped my blood sugar stay more stable, with the added bonus of keeping intestinal yeast overgrowth at bay.

I try to limit carbohydrates like bread and pastries (even the gluten-free, sugar-free kind, because they still cause a quick rise and then drop in blood sugar) and instead eat whole grains like rice and quinoa. I’ve found that it helps to have protein and complex carbohydrates at every meal and snack. The protein gives me sustained energy; without it, my blood sugar will crash an hour or two after the meal. The carbohydrates fill me up and raise my blood sugar to a healthy level; without them, I feel nauseous and lightheaded.

I know when my co-infection babesia is flaring up because in addition to air hunger  (feeling like my body isn’t getting enough oxygen), exertion fatigue and headaches, my blood sugar crashes more frequently, and I have bouts of lightheadedness. I’ve found that during these times it helps to eat meals rich in iron. A steak and a big bowl of spinach can make a big difference. Cinnamon is also a great blood sugar stabilizer. Try sprinkling some on steel cut oats with protein powder for breakfast.

Finally, I recommend always having snacks on hand. You never know when you’re going to get stuck in traffic and your blood sugar will drop. I always carry a granola bar and a box of raisins in my purse, and I keep a juice box (made with 100% juice and no added sweeteners) on my nightstand, for those pesky middle of the night crashes.


Opinions 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]

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every couple months, Lyme Warrior Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she is frequently asked.

 

Do you have a question for Jennifer? Email her at [email protected].

You’ve written about relapsing. How long does it take for a Lyme patient to relapse?

Many Lyme patients continue to feel well after stopping treatment, and my hope for them is that they will never relapse. But if Lyme disease is not fully treated, leftover spirochetes can start replicating, causing the infection to flare up again. While this can happen out of the blue, it is more often triggered by compounding issues such as stress or another acute infection. Stress releases cortisol in the body, which lowers immune function.

When the immune system is compromised, it is less capable of fighting leftover spirochetes. For some people, this happens right away—(usually signaling that they weren’t treated long enough)— while for others it happens months or even years later. If the body doesn’t have other defenses protecting it, such as antibiotics or nutritional and homeopathic supplements, and there is even one spirochete left, that spirochete is free to multiply at any time. For me, it took six months after stopping treatment to relapse. By then, I had moved and started a new job, and was in over my head physically, mentally and emotionally. My doctor said all the stress I was under was like “walking into a minefield of ticks.” Now, I stay on low-dose treatments to keep myself in remission, and I have not relapsed in ten years.

Only you and your Lyme Literate Medical Doctor (LLMD) can decide when you are ready to stop treatment and how you should continue to protect your immune system once you do.

What is the best test for Lyme disease?

Unfortunately, there is not yet an accurate and reliable test for Lyme, but Global Lyme Alliance is supporting research towards one. Current Lyme tests are indirect, meaning they only look for antibodies against the infection, not for the Lyme bacteria itself. It can take the body a while to generate antibodies, causing false-negative tests. The most common test is the two-tiered Western Blot and ELISA test, which is only 50-70% accurate. Some labs like Igenex do more sensitive testing, reading more bands for Lyme on their Western Blot than the standard CDC Western Blot. They also test for two strains of Lyme bacteria, called B. burgdorferi, rather than one. Other tests are the polymerase chain reaction assay (PCR), which detects the DNA of the Lyme bacteria drawn from a joint (usually the cerebrospinal fluid) and the C6-Peptide test (for more information on testing, click here).

Because testing is so inaccurate, both the Centers for Disease Control and Prevention (CDC) and the International Lyme and Associated Diseases Society (ILADS) note the importance of a clinical diagnosis, which can only be done by an LLMD. My tests were CDC-positive for both long and short-term infection, but I also had a thorough clinical assessment by an LLMD.

Do you know if muscle atrophy and nerve damage can be regenerated after Lyme treatment?

This is another question that varies per patient, but I can tell you that I personally was able to heal from both. I had very serious cases of Lyme, Babesia, and Ehrlichia that crossed the blood-brain barrier. A SPECT scan showed lesions on my brain and inflammation that blocked the left side from getting adequate oxygen. My muscles atrophied to a point where my previously rock solid ski legs jiggled like Jell-O.

Recovery was slow and unsteady, and did not happen solely due to antibiotic and antimalarial treatment; it also took a lot of work on my part. I had to really rest my brain while I was going through treatment, not pushing it to watch TV or read when those activities gave me brain fog. I had to learn my limits, pulling myself away from stimulating activities before I became overwhelmed. I still have to enforce limits today. I used to get paroxysmal limb movements—twitching of my nerves and limbs—and while that still happens occasionally when I am overtired, it is far less frequent than it used to be.

I worked assiduously at physical therapy to regain my muscle strength, but not until I had completed enough treatment to really be ready to exercise. Then I started very slowly: thirty seconds on a stationary bike. I worked up to a minute and thirty seconds, only to get a migraine and wind up back in bed for a week. Eventually, over the course of many months at physical therapy and many years on my own, I have improved to a point where I can now spend a morning skiing, paddle boarding, or canoeing. I recently kayaked three miles on the Boston Harbor. I still have to rest after I exercise and am no longer skiing moguls for eight hours a day, but I am also not as young as I once was. Nevertheless, I am happy to report that my rock solid muscles are back.

In addition to medicine and physical therapy, neurofeedback and integrative manual therapy helped me to regain cognitive and physical function. Don’t give up hope!


Opinions 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]