Tag Archives: Lyme warrior Q&A

lyme warrior

Dear Lyme Warrior…Help!

by Jennifer Crystal

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

Can antibiotics help neurological symptoms? Which antibiotics did you take?

Yes. My neurological symptoms such as sleep disturbances, muscle twitches, brain fog, migraine headaches, and difficulty with word retrieval all improved after months of antibiotics. At first, many of these symptoms worsened, as the spirochetes (Lyme bacteria) burrowed deeper into my nervous system to evade the antibiotics. But eventually all my symptoms lessened to a degree where I could function again. Complementary therapies such as neurofeedback and integrative manual therapy also helped, but they couldn’t have killed the bacteria in my brain on their own. That required antibiotics.

A good Lyme Literate Medical Doctor (LLMD) will be able to to determine whether your tick-borne infections—you can get multiple infections from a single tick bite—have crossed the blood-brain barrier, and, if so, what antibiotics will be best for you. Unfortunately there is no set protocol because every Lyme case is different. Many factors enter into treatment decisions.  

Your treatment will depend among other things on how long you’ve been ill, how long you went undiagnosed, which bodily systems are affected, how you respond to treatment, and whether you have other tick-borne diseases in addition to Lyme. Length of treatment varies per patient. I wish I could give you a magic protocol, but there’s no such thing. Only an LLMD can clinically assess your particular case and provide you with an individualized care regimen.

How long did you stay on antibiotics after relapse?

I’m still on them. I’m on a much lower, maintenance-level dose, which I usually take six days a week. When I experienced a flare-up of symptoms earlier this summer, I increased the antibiotics to seven days a week, and doing so fixed the issue. More than a decade after relapse, antibiotics are still helping me.

They are also not hurting me, at least in any tangible way that my doctors can determine. We don’t know what the long-term effects might be, but I have blood work drawn every other month, and so far everything is fine. I take probiotics and stick to a gluten-free, low-sugar diet, which has staved off any yeast infections. I have not become resistant to antibiotics; when I get a sinus infection, I take an antibiotic in a different family than the one I’m on, and the infection clears up just fine.

But this is just my personal experience. I’ve met lots of chronic patients who have gone off antibiotics after relapse and have done well for awhile—maybe six months, maybe a year—and then they eventually relapse. I’ve met others who do well pulsing antibiotics—going off them for a bit, then going back on, then going off again. Still others have switched to only herbal tinctures, and some do a mix of both low-dose antibiotics and herbal tinctures. Only you and your LLMD can determine the course of action that’s best for you. It usually takes some trial and error to figure it out.

Is Lyme disease a mental health issue?

Lyme disease can affect mental health, but it is not exclusively a mental health issue. That is to say, a Lyme diagnosis is not synonymous with a diagnosis of a mental health problem such as bipolar disorder or schizophrenia. Rather, the tick-borne infection causes symptoms that affect one’s mental health. Patients can present with bipolar or schizophrenic behavior, but those behaviors may be an effect of neurological Lyme, and usually not a sign that mental illnesses are the root cause. A competent Lyme literate psychiatrist should be able to tell the difference between a primary mental health diagnosis and a secondary one caused by one or more tick-borne infections.

But be aware, Lyme can impact mental health in many ways. Patients can become irritable and angry, or experience sudden mood swings. Many Lyme patients suffer from anxiety or depression, again as secondary effects of one or more primary tick-borne infections. All of these symptoms may be signs that the central nervous system has been affected.

In summary, Lyme can cause mental health issues, but these are symptoms and usually not core mental health issues. Lyme affects patients physically, neurologically, mentally, and emotionally. It is a full-body illness that should not be too rigidly categorized into its constituent parts.


jennifer crystal_2Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. 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]