TOUCHED BY LYME: Recovery is a long, slow, balancing act
Guest blogger Jennifer Crystal says there is no “magic secret” to getting over chronic Lyme disease.
After each blog I post, I receive dozens of emails from Lymies asking what I did to get better. People question whether I tried certain treatments, whether I’ve considered herbal therapies, whether I can tell them the magic secret to getting over chronic tick-borne disease. Rather than continue to email the same response, I thought it might help to address these questions in a post.
The first and more important thing I must tell you is that there is no magic secret. There is no set protocol for treating tick-borne diseases, because every case is different. Variables such as duration of infection without treatment, spread of infection to different areas of the body and brain, and presence of co-infections make it impossible for doctors to treat any two cases the same way. Lyme manifests itself in myriad ways, and people respond differently to various treatments. Some patients suffer more from joint pain, while others’ chief complaints are neurological. It’s important to find a Lyme-literate physician who can assess which treatments are best for your specific case. My LLMD spent two hours with me on our first visit getting my complete medical history; since that appointment, I’ve felt confident that he is treating the patient, not just the disease. That’s half the battle in conquering complex cases.
The other little known secret that I must make clear is that I am not cured. The positive, reflective tone of my posts, peppered with details of my now-full life, may make it seem like I am back to 100%. Unfortunately, it is very rare for someone whose illnesses went undiagnosed and untreated as long as mine did—whose Lyme crossed the blood brain barrier—to be cured. As we all know, spirochetes are hard to kill because they spiral and evade even the most powerful treatments. And as I learned when I relapsed in 2007, one spirochete left dormant in the body can silently replicate, like cancer cells, and attack with great force when the body shows any vulnerability.
After many years of a combination of treatments which I will discuss further in this piece and in future posts, I am proud to report that I am in remission. It’s always possible that I could relapse, and I must be especially careful in times of stress to listen to my body and nip flare-ups in the bud. I still have limitations. I must rest every afternoon, without exception, or I will hit a wall and meltdown physically and mentally like an overtired child. I’m hyper-vigilant about maintaining good sleep hygiene, so my body gets adequate rest and recovery time, and so I do not slip into the dark days of insomnia and hallucinogenic nightmares that I fought so hard to overcome. I still take a low dose oral antibiotic to keep the spirochetes at bay, as well as a host of herbal and nutritional supplements to keep things, as my doctor says, “humming along.”
Most importantly, I pace myself. My physician’s assistant once told me that the biggest mistake Lymies make is they push too hard when they start to feel a little better, and then crash. Who among us hasn’t done this? Back when I was bedridden on intravenous antibiotics, I itched to get moving, to rejoin the world of the living. As soon as I felt the tiniest surge of energy, I started physical therapy. I cycled thirty seconds on a stationary bike and wound up in bed for three days. I learned that we have to bottle up reserves of energy, so that we have more than fumes to go on when our tanks slip unexpectedly to empty. To use another analogy, a naturopathic doctor once told me, “Think savings, not credit card spending.”
The trick to this pacing, of course, is learning your body’s signals. Just as there is no set protocol for treating tick-borne illnesses, there is no set formula for living with them. It takes me much longer to do my schoolwork now than it would have in the old days, because I know if I read too much at once, the brain fog will start to roll in. I consider what my energy expenditure will be for the day—will I walk to school? Do I need to run errands?—when deciding whether I should do laundry, or unload the dishwasher, or if I should just save those tasks for another day. Do I get this balance right all the time? Absolutely not. Sometimes I push too hard and I pay for it. But I am at a point where I spend more time fine-tuning my self-care than crashing and burning, and that makes day-to-day living much, much easier. That makes it possible for me to attend class, to socialize with friends, to spend a morning skiing. To live a relatively normal life.
It’s taken years for me to get to this point, and one of the biggest hurdles I had to overcome was accepting tick-borne illness as part of my life. For so long I fought against it; I’d get angry at my body when it didn’t respond to treatment, get angry at myself for not taking better care, get angry at the Lyme for ruining for my life. After my relapse, I realized that Lyme would always be a part of my life, and it was up to me to decide if it—or I—would be in control. That’s not to say I’ve resigned to the illness. I still hope for a cure, I still work with my doctor to get even healthier. But I’m willing to take the Lyme with me on that ride. I know that working with, instead of fighting against, my limitations, only gives me more energy in the long-run.
Sometimes I think of Lyme recovery in terms of the stages of grief. There is a well-known acronym, SARAH, which stands for Shock, Anger, Rejection, Acceptance, Healing. It’s tough for Lymies to move from rejection to acceptance, especially when they feel so sick. It takes time and a lot of treatment to have the mental capacity to even consider the acceptance stage. Once you do, though, healing is just around the corner.
Here is a general list of things I’ve done to help get better. I can talk about some of them in more depth in future posts.
- Antibiotics: Lyme is a bacterial infection. Nothing kills spirochetes like antibiotics. The type of antibiotics, and the best method of administration, is different for everyone. However, it’s important for everyone to take some sort of probiotic, to avoid intestinal yeast overgrowth, which can occur when antibiotics kill good bacteria in the stomach along with the bad.
- Herbal and nutritional supplements: In my personal experience, herbs that work against tick-borne illnesses are an excellent adjunct therapy to—but not a replacement for—antibiotics. Nutritional supplements help to replenish nutrients that may be depleted due to the disease or treatment. Only your doctor can decide which combination of the many supplements available is best for your case.
- Gluten-free, sugar-free diet: Along with probiotics, this diet helps to keep yeast at bay. For some people, gluten and sugar also weaken the immune system and encourage spirochete growth. This diet has helped me to regulate blood sugar, which can be a problem for those suffering from the co-infection babesia.
- Psychotherapy: Illness of any kind can create serious havoc in your life and the lives of your loved ones, and can lead to anxiety and depression. An empathetic but goal-oriented therapist helped me to deal with the many ramifications of my illness.
- Integrated Manual Therapy: This is a type of hands-on therapy, like massage or Reiki, that, at the most basic level, helps to get different systems of the body working healthily. It can include cranial-sacral therapy and neurofascial processing. For more information, visit instituteofimt.com.
- Neurofeedback: Like biofeedback, this non-invasive treatment helps train the brain, using its own information, to perform better. This treatment is the only one that began to touch my insomnia and nightmares, and I still do maintenance sessions. For more information, visit zengar.com.
- Physical Therapy: It’s important to find a Lyme-literate therapist who understands not to push a Lymie past capability. It is also imperative not to start physical therapy until enough of the bacteria has been eradicated that you are really ready. For me, starting too soon only spread the toxins around my body and caused more harm than good. Once I was ready, a very slow buildup (one minute on the bike for a week, 1:15 the next, 1:30 the next) eventually got my stamina and muscles back up to speed.
Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at firstname.lastname@example.org.
- April 1, 2013 at 11:05 am
I love this story. I thought that I was over chronic Lyme for 12 years. Because I went into remission for that time. Other then a few sore days, getting the common cold more than others of core, and migraines just about daily and having some memory issues, I was pretty sure I was cured of Lyme after almost living in an acupuncturist office for a year. I had to go 6 days a week for double treatment. My liver, kidneys and spleen were all failing and doctors gave up on me. So the acupuncture saved my life. Well after going into remission in 2001 in Aug 2012 I started to get really sick again. now my liver, spleen and kidney are in bad functioning order. I can’t take medications because I am allergic to them so I do herbs and acupuncture again. I hope that they will find a cure for this disease one day. And I am going to always have to remember just because you feel alright it doesn’t lean that this horrible disease will ever leave my body.
- April 1, 2013 at 1:35 pm
Your honesty and bravery give me hope. I needed to hear the diet and neurofeedback info right now. Explaining to our 17 yr old that this is chronic and will go into remission has been a challenge for me, for I “just want to be normal.” The new normal is still the part of my journey that is in the rejection stage. Adapting and listening to my body are ideas I know, but I do not heed them–yet. Thanks for updating. Glad you’re able to take classes now. (Applause!) I truly understand the “over reading” and slipping into the brain fog. Keep writing and keep healthy!
- April 1, 2013 at 1:47 pm
Jennifer you are a doll. Thanks for all your support. People don’t understand and it’s easy to lose hope.
- April 2, 2013 at 7:50 am
Thanks for this informative, insightful piece. This is sound advice and inspiration for anyone in recovery.
- April 2, 2013 at 11:04 am
Thank you for sharing this post. I applaud your willingness to share what you have learned and lament that your knowledge is born of such painful personal experience.
- September 13, 2013 at 4:02 am
Jennifer, thanks for your story. I’m just starting my picc line, my second time treating my Lyme. I was first diagnosed in 2009 and went into remission for years, and have been very, very sick since June – sicker than the first time around by far. I really needed to read your tips on getting slowly back to wellness, and acceptance. Best to you. – Jen
- November 4, 2013 at 11:55 am
Thank you, thank you and thank you! I had a moment with family members last week when they told me, “Go get a part time job.” I’ve sent emails with links, videos, etc about Lyme. I have neuro Lyme symptoms left and was diagnosed last December after my body crashed in October of last year. I’m thankful that I’m getting better but I have a little ways to go and they don’t understand it. But this post made my day…someone who knows what we are all going through. I’m still in the Rejection phase and kinda accept that I have Lyme…but I really want to get to the healing and remission phase. It’s hard and emotional. Thank you again for sharing! I plan on sharing this blog with others! Peace and blessings!
- November 1, 2014 at 8:36 am
Thanks so much for the tips. Lyme is a devastating disease and not many people understand, for sure. Next week I start my second round with IV antibiotics after being bitten by a tick in 2010. Rocephin IV has been a godsend to me (the first round I didn’t follow up with oral antibiotics but should have) and now I have renewed hope! 😀 Good luck and good health to you. ~gail
- February 19, 2015 at 5:54 pm
Dear Jennifer thank you so much for this post. I am 18 and have had lymes disease for 11 years now. However, it went untreated for 10. The lymes mainly affected my joints (my hands were completely curled), brain fog, and slow movement. I have been doing all natural treatment for the past year and have seen significant changes. However, you strongly encourage antibiotics? What type of antibiotic did you use? I will be going off to college this fall and would like to be in total remission before I move off on my own. Thank you!
- February 21, 2015 at 7:36 am
It’s liz. From wohelo.
I was feeling bad today and started googling for lyme information again.
Then I found you. I still think of you constantly and how amazingly strong you are. I wish I could be as disciplined as you. I have definitely fallen into the trap of Pushing too much when I feel better. All the best! And glad you are functioning better now.
- March 4, 2016 at 5:40 pm
I’m a single mom. I HAVE to work long hours. I work at home after work keeping the kids and house happy. I don’t have the luxury of napping during the day. I just found out a week ago that I even have this. I have no idea when or where I got this. I am pissed. I want it to go away. I got NO info from my clinic. Just take these antibiotics and we will see you in a month! I’m trying to learn about it but I stop reading cause there is conflicting info all over the place! I see people calling it a virus? Reports saying you can pass it to someone else through sex? It mimics syphilis? ???? And you never truly get over it???? And if I don’t I will have to get penicillin injections every 3 weeks for 10 years????? HELL NO!!! I’d rather just not be here period. If the antibiotics don’t work I’m not fkn bothering!
- April 21, 2016 at 5:54 pm
To Kjo. I’m so sorry about your discouragement. I’m a mother of 2 year old twins and work full time and was just told last week that I have lymes an that to “take doxy for 1 month and let me know how you feel”. And then I decided to do more research and realized my symptoms could be chronic and could return later and be worse than how I’m feeling now! How discouraging! The more research I do the more I agree with the author of this blog . . . find a Lyme specialist. They will be able to answer a lot of your questions and point you to reliable information and help . . . So, that’s what I’m going to do. Keep your head up! I have so much respect for single moms!!!
- April 24, 2016 at 12:42 pm
I would advise you all to look at Dr Klinghart’s comments, it might give you more information. I have been unwell for over 25 years. Antibiotics have not been helping in my case as I was diagnosed very late. It is different for everyone, it probably depends on the co-inffection. In my case I lost almost all my teeth as my dentist didn’t know anything about tooth decay and Lyme, or the problem with root treatment. Don’t give up. As I have Lyme since a long time, in my case I have chosen the treatment without the antibiotics because my immune system is very low.
- February 13, 2017 at 7:59 am
I believe and not because I am a medical doctor at all. That there are natural remedies that can help and cure a lymes patient even in the worst case . I love the fact that you have mentioned three above. I do believe lymes disease mimics and may even have the same feeling as cancer. How many patients have you heard that have used cannabis oil and have never had a relapse? It helps with pain, relaxation, all while ATTACKING the bad fungus. Therefore; not allowing the doses to spread. Acupuncture and seeing a natural herbalist are amazing in correlation with cannabis oil. I understand that is not readily available in all states but I have to tell you I am a 100% believer that will not only help but may possibly even completely cure your lymes disease for life. The biggest advantages to this I not only a possible cure for life but you will not be putting anabiotic’s in your body which just further we can your immune system. We have been taught some small children and then later as parents but if your child is sick to give them anabiotic’s to heal them. We never knew giving our children antibiotics would wreak such havoc on them as adults. I am not a doctor I am not a hippie or a pot smoker but I do believe there are a million great cases to prove how it is a true miracle. Read Rick Simpsons story or follow him on YouTube- it’s Amazing
- May 12, 2017 at 5:00 am
Great article! I am currently battling the symptoms currently and I don’t feel so alone after reading this. Back in 2009 I was misdiagnosed for months. It got to the point I could not function and I told the hospital I truly believed whatever was wrong with me was killing me and I felt that I was about to die. I had even left my jobs because I couldn’t physically or mentally do them. Finally, the hospital provided a doctor that knew about Lyme’s. He said if it walks like a duck, quacks like a duck, and swims like a duck, well, it’s a duck. So he started me on IV antibiotics and oral antibiotics. It took about 2 weeks before I had a sign of relief and about 6 months to resume to some sort of normal. 3 years ago I began to get sick again with weird flu like symptoms that would not clear up. Finally the aches and weakness were met with the mind dulling headache, confusion, and off balance feelings. It was then I knew it was Lyme again. So after convincing my Dr to put me back on doxycycline, I finally felt better. 2 weeks ago I began to get tired, extremely tired. This week the headache and joint pain is back, the confusion, off balance feeling again. Went to my primary yesterday and he did not give me antibiotics. He did do a blood test (which failed to help me in the first place) so here I suffer, exhausted, in pain, and miserable. I have too much going on to feel like this right now. I will do all I can to stay positive and get through this.
- September 15, 2017 at 7:07 am
Thank you for sharing. I just realized during this current relapse that I too have to accept that this will be a part of my life now and it’s not going to go away.
- September 22, 2017 at 1:49 pm
Im a single mother of 4. My lyme went untreated for 17 years or so the specialist thinks. Makes sense. A little over a year ago i got so sick i was forced to quit my job. Its a terrible disease that noone understands and the doctors that do take insurance dont know a darn thing about it. My father has done a lot of research on the origins of lymes and long story short i think its probable that our own government is responsible for it. Biological warfare.
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