Tag Archives: lyme questions

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? If so, email her at [email protected].

Did your pain move sometimes? My worst pain is near some scar tissue.

Yes! One of the defining features of Lyme pain is that it’s migratory. This distinguishes it from, say, the pain of Rheumatoid Arthritis (RA), which is more symmetrical (both knees instead of just one), and which doesnt tend to move around like Lyme pain. While RA affects most of the joints, Lyme can affect one, two, or many.

I felt pain mostly in my forearms and shins, but also sometimes in my back, neck, and head. Sometimes my fingers ached so much I couldnt type, and other days they felt okay. Now that Im in remission, I know when Im having a Lyme flare-up because my forearms and shins start to ache. When Im overtired or I’ve over-exerted myself, I always get a headache on the left side of my head. (This is due to babesia, which eats oxygen in the red blood cells. When I over-exert myself, I dont get enough  oxygen to that side of my brain, causing inflammation and subsequent pain).

Moreover, Lyme loves to hide in scar tissue, so it makes perfect sense thats where youre having the worst pain. I had the anterior cruciate ligament of my left knee repaired before I was aware I had Lyme, and it took much longer for that knee to heal than it should have; this is likely because there was Lyme bacteria in the scar tissue. I’ve also had multiple eye surgeries, and my doctor suspects scar tissue over my left eye is why my headaches often start there.

Is the word cured” ever used with tick-borne illness?

Yes and no. It depends which illness you have, how long youve had it, how quickly you got treatment, and how well you’ve responded to treatment. If Lyme is caught early and treated adequately with two to four weeks of antibiotics—and if it is not complicated by co-infections—it can conceivably be cured. However, even in those cases, some 20% of patients still experience ongoing symptoms called Post Treatment Lyme Disease Syndrome (PTLDS), and they can require additional treatment.

My own Lyme is in remission, not cured because I went eight years undiagnosed. By then the bacteria had crossed the blood-brain barrier. Once its in the central nervous system, it becomes very difficult to fully eradicate it. I’m probably 80% restored to full health, a percentage that has continually improved (with brief periods of flare-up).
There are others who have had PTLDS who claim to have been cured, but some of these have subsequently relapsed. It really depends on each individual case.

I was originally diagnosed with the co-infection Ehrlichia, and that is now considered to be cured. I no longer test positive for it or show specific symptoms. The co-infection that still gives me the most trouble is babesia. I was not surprised to hear doctors at this years ILADS conference say that babesia can be treated to an extent—symptoms can be alleviated and held at bay for a while—but that it often rebounds. Currently, babesia has no cure.

But don’t despair. Researchers are getting closer to using that coveted word cure” every day. See my “Highlights From ILADS 2019” post that provides information on new drugs like Dapsone and Disulfiram, the latter of which has some patients, as Dr. Kenneth Liegner stated, enjoying enduring remission,” that is, feeling well for six months or longer. Its too early to use the word cure” decisively.

Do you think Im going down the right path, being treated for tick-borne disease?

I know it can be confusing when so many doctors give you different diagnoses and treatment options. You dont know who or what to believe, and that is scary. Even two different LLMDs might give you two different protocols (and thats because they each have a personal opinion on what might work best for you, since there is no single set protocol for treating tick-borne disease).

If you trust the LLMD who has made a clinical diagnosis of Lyme with or without co-infections, and your symptoms corroborate those infections, and/or your blood work confirms those infections, then yes, I absolutely think you are going down the right path. Remember that having Lyme is not a choice.

Once you begin treatment, youll know for sure if youre on the right path. If you do have Lyme, youll likely have a Herxheimer reaction (when the antibiotics kill off the Lyme bacteria at a rate faster than your body can eliminate them, making you feel worse before you feel better). That could be a good indication that you should stay the course.

The real question is, do you feel like you are going down the right path? No one knows your body better than you do. You know you are sick. You know what your symptoms are. You know they are not all in your head. If youve seen an LLMD and feel in your gut that the doctor is right for you, then trust that feeling, and dont worry what anyone else says.


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at [email protected].

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_2

Opinions expressed by contributors are their own.

Jennifer 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 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]

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every couple of months, Lyme Warrior Jennifer Crystal will devote a column to answering your questions. Here are her answers to some frequently asked questions she has recently received.

 

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

How long did it take for you to get better?

I wish I could give a magic answer to this question. Unfortunately, every case of tick- borne illness is different. It depends whether you have co-infections, whether the illnesses have crossed the blood-brain barrier, how long you went undiagnosed, and how well you respond to treatment. I went undiagnosed for eight years, and Lyme had crossed into my central nervous system. I also had Babesia, Bartonella, and Ehrlichia. For me, it took a year of intravenous antibiotics, as well as oral anti-malarial medication. I suffered a serious relapse a few months after stopping medication, and it took another couple years of oral treatment to battle back into remission. I have been steadily improving since then. In 2007 I was bedridden and hopeless. By 2008 I was living independently and freelance writing; by 2011 I moved to Boston and attended graduate school full-time; by 2014 I finished school and published my first book. Now I am writing, teaching, skiing, paddle boarding, recumbent biking, canoeing, socializing and living a great life with moderate limitations. I am still on a low-dose antibiotic as well as many homeopathic remedies and supplements. My health is continually improving. I don’t know how long it will take for you to get better, but I can tell you that there is hope.

What medicine and/or supplements did you take?

Because every case of tick-borne illness is different and individualized responses to treatment vary, it won’t help for me to tell you about my specific protocol. I can tell you that for me, a blend of Western and Eastern modalities did the trick. I combined antibiotics and antimalarial medications with supplements that replenished the nutrients depleted by Lyme. Sticking to a gluten-free, sugar-free diet has also been helpful, as have complementary therapies such as integrative manual therapy, neurofeedback, cognitive behavioral therapy and talk therapy. I recommend taking a holistic, full-body-and-mind approach to your illness.

How do you deal with people who don’t “get it”? My spouse/parent/friend thinks I’m just depressed and lazy.

This is a tough one, and one I really understand. It’s so frustrating to not only feel sick, but then to have people question the validity of your symptoms! I wish people could look inside our bodies and brains and see the damage spirochetes cause. It’s much easier for someone with a broken arm to receive sympathy, because the injury is visible. It’s also easier for patients of better-known illnesses like cancer to get the support they need, because everyone has a sense of how devastating and life-threatening cancer can be.

My first line of advice is to ignore the naysayers. No one knows your body better than you. You know what it feels like to be healthy and you know when you are sick. Seek out people who understand, or who can at least offer compassion and validation. Some patients find this in local or online support groups. Some find it by emailing me or other people on the winning end of this battle. I have found it in my friends who have supported and believed in me no matter what.

I recommend a few ways to try to bridge gaps in understanding. One way is to show your spouse/friend/parent/caregiver some of the blogs on this site, so they can read about the personal experience of Lyme disease. You might have them read some of the books that help to explain the disease. See if there is a Lyme conference near you, and ask someone you love to go with you or attend if you are unable to do so. All of these methods helped in my case, and I’m grateful for the support and understanding I now have.

Do you have any communication strategies?

One way might be to watch a documentary (such as “Under Our Skin”) together with the person who doesn’t seem to get it, so you can discuss it together. Another suggestion is to write a letter telling your loved one how you feel. Sometimes it’s hard to express ourselves orally, especially since we can be interrupted in conversation. Writing will allow you to organize your thoughts and get them all out on paper which, as Henry Miller said, is like “getting the poison out.” Use “I” statements, such as “I feel,” and try to really describe exactly what is going on inside your body. I like to think of the children’s serial “The Magic School Bus” in which a class of students embarks on field trips to places like the solar system, the ocean floor and the human body. If a Magic School Bus was driving through your body or brain, what would it see? Touch? Feel?

As Maya Angelou said, “through writing, the ‘I’ becomes ‘we’.” Writing has certainly helped me not only to heal myself but to promote understanding among others, and I hope it can be a useful tool for you, too.


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]