Lyme Disease and Neuroplastic Recovery

After I went public about my recovery, I received many queries about Lyme disease. Given that Lyme disease is rampant, that it can be a long and grueling illness, and that I was an example of how bad chronic Lyme can get, I’m not surprised that people are asking me about my recovery. I have also done several coaching sessions with people who are already working on a neuroplasticity recovery program who, along with chronic conditions such as chemical sensitivities or chronic fatigue syndrome, also have Lyme disease.

It’s sometimes been challenging for me to answer questions about Lyme. For one thing, there are a lot of unknowns about how neuroplastic treatment approaches work for Lyme disease. While I have opinions, I definitely don’t think the topic of recovery from tick-borne disease is cut-and-dried. I also sometimes get the impression that my answers to people’s Lyme questions are not what they hoped for, which isn’t fun because I hate to disappoint.

Nonetheless, I do want my experience to be as useful to as many people as possible, so I am writing this post in an effort to answer the most common questions and issues I’ve run into related to Lyme and neuroplastic recovery approaches. The recent suicide of a friend who had Lyme disease has given this topic a greater sense of urgency for me.

I really want people with chronic Lyme disease to know that there absolutely is hope. When I first joined Lyme communities online, I felt discouraged when I met people who said there is no cure to chronic Lyme, that it wasn’t possible to recover completely. For anyone reading this who has thought the same and is hoping for more encouraging perspectives, I hope this post will help you.

The questions I’ve been asked about Lyme and recovery that I adress in this post include…

  • How cured is your Lyme disease? Do you still have symptoms?

  • Can DNRS* or a neuroplasticity program cure my Lyme disease, too?

  • Which neuroplasticity program do you think helped you the most?

  • What should I do if I have chronic Lyme disease? Should I do DNRS*? Or something else?

  • I did DNRS* but I still have symptoms. Why do you think this is?

In this post, I’ll address these questions and others about tick-borne disease (TBD) and neuroplasticity-based therapies. I’m basing my opinions on my personal experience, my study of Lyme and of neuroplasticity, and on the best informed guesses I can make at this time. There is still a lot more to learn about TBDs and about neuroplastic recovery. I am hopeful that in time, all interested people will have more answers.

Also, please note: I am not a doctor and am not making recommendations of treatments for individuals reading this post. I have done coaching sessions with people who wanted to know if I think DNRS or other neuroplastic approaches can help them, and some of these people have had Lyme. I am more than happy to offer this to anyone who is interested, but this post should not be interpreted as medical advice.

Now, on to the questions!

Are you actually cured of Lyme? Do you still have symptoms?

The short answer to this is that I have recovered, and I don’t have symptoms anymore, but for a while it mas hard for me to know for sure. I’ll explain why below.

This was me before I started my recovery. I’m at the optometrist, trying on glasses. Before my recovery, this is how I almost always looked in public — I had my mask and oxygen on and was using a powerchair.

Sharing wearing a white baseball cap and white cotton mask over her nose and mouth, sitting in a powerchair with many glasses frames and mirrors in the background.

April 2013

Why it’s hard to say definitively that I no longer have any Lyme symptoms

  • I still have a little bit of recovery left, so I’m not sure what the eventual picture of my health will look like. I have found that a lot of symptoms that I thought were going to stay with me have faded as I have settled into my recovery and my “new” body. It seems reasonable to expect that process to continue.
  • I first became chronically ill when I was in my 20s, and I’m now in my 40s, so I don’t know what feels normal for an aging body, what is a side-effect of a long illness, what is side effects of medication and medication withdrawal that I’m still going through, and what is a result of deconditioning that I will recover from.
  • As part of my recovery process, I pay as little attention as possible to any form of physical distress, so I am not that aware of “symptoms” unless they are very intrusive.

Even with those caveats, my recovery from Lyme feels pretty remarkable to me! I would like to explain why.

Here’s me before DNRS in May 2013. My Lyme doctor and I decided that after four-and-a-half years of intravenous antibiotics, I had gotten all the benefit I could from them.

Sharon sits in a powerwheelchair and has a white mask on her face. She has her left sleeve rolled up to reveal a dressing and PICC line on her left upper arm.

This picture was taken when the visiting nurse was about to remove my PICC line. I was very happy about that!

To get a sense of the scope of my recovery, I offer a list of the TBD symptoms I used to have which I don’t have anymore. Some of these symptoms were things that had improved to some extent from antibiotics before I started neural retraining, and others were things that were still huge problems even after antibiotics. In the list below, I’m focusing only on symptoms that started with my TBDs. I’m not including the CFIDS and MCS symptoms I had before I moved to the country, although there were several symptoms I had before Lyme that did worsen or take on new aspects after infection with TBDs.

I no longer have these TBD symptoms…

  • Trouble speaking (mixed-type, apraxic spasmodic dysphonia)
  • Trouble or inability to move my limbs, especially my legs
  • Tremors or weakness in my limbs
  • Exhaustion so severe I cannot move or can barely move
  • Migraines or vertigo, nausea, or vomiting
  • Sensitivity to light, movement, touch, sound, and smell
  • Severe, chronic pain in my muscles and joints, or swollen joints
  • Sore throats, sweats, flushing, feeling feverish, chills
  • Mood swings, anxiety, agitation, rage, paranoia, mood and behavioral disturbances
  • Hopelessness, despair, loss of creativity
  • Insomnia that reversed my sleep schedule (e.g., going to sleep at 5 AM and getting up at noon)
  • Cognitive impairment, including trouble thinking, remembering, concentrating, finding words, problem-solving, or reduced processing speed or impaired executive function
  • Tacchycardia, ringing in ears, eyelid droop, hypercoagulation (thickened blood)

August 2013 — two weeks into my recovery, without mask or oxygen, happier, still using wheelchair:

Sharon's mother, father, and Sharon sitting outdoors at a festival at a folding table with literature on it, grass below, trees above, other tables and umbrellas, tents, and people in the background.

My parents visiting with me at my town’s summer festival.

What might still be “symptoms”?

It’s a pretty short list!

  • The most challenging thing has been my feet. For a very long time, I did extremely little standing or walking (for a few years, I did none), so when I started walking again, it was a really big adjustment for my feet. Since I began to recover, my feet have gone through plantar fasciitis, plantar fibromas (lumps of collagen in the sole of the foot), tendinitis, fallen arches/flat feet, and bunions. With stretching, reconditioning/time, good shoes, and orthotics, my feet have improved a lot! It was a very happy day when I first noticed that my feet were not in pain all the time anymore. I expect my feet to continue to improve. I don’t think any of this is Lyme-related.
  • I have some aching and stiffness in the muscles and joints of my legs which goes away with movement and exercise. (Essentially, if I sit or lie down for half an hour or more, when I get up again, I’m creaky for a couple of minutes, then it goes away.) My PT was pretty sure that it was muscle fatigue — the aching you get the day or two after a big workout. Since almost every day for the past year has been the day after a big workout for me, it’s taken some time for this to subside. For example, when I had a virus last winter and was resting on the couch for several days, doing no swimming, yoga, or hiking, the pain lessened after the third day. Thus, this seems to be a deconditioning issue. Like my feet, I have noticed my legs getting less and less painful over time.
    Another wrinkle is that I am tapering off of Elavil (amitriptyline). Elavil withdrawal causes muscles to contract, which leads to tight, sore muscles.
    Because of the questions around aging, medication withdrawal, and deconditioning, it’s really hard to know how this will shake out.
  • I am still going through withdrawal of some medications. The most unpleasant effect has usually been anxiety, though sometimes it also affects my sleep or causes mood swings or other symptoms. These symptoms subside within one to four weeks after a reduction in medication, then kick up again after another reduction. I do not think this is Lyme-related.
  • Although my mind feels very functional overall, I think I don’t think as fast or as easily as I did before I got sick. Since I have noticed other people my age have the same “issues,” I think this is probably just the difference that twenty years makes.
  • Probably the hardest thing about recovery has been reentering the world of social interactions in meatspace. I always had some anxiety and confusion around social situations and did not feel like I fit in with other people, and that’s been the biggest challenge of being out-and-about again after 90 percent of my communication being by phone and internet for almost 20 years. But I don’t think this is related to Lyme disease, either.

Recovered! Things are pretty different now:

Sharon standing with knees bent and arms blurry waving in the air, wearing a purple tank top and olive cargo shorts. Her house, which is purple, is behind her, and there are tables and chairs with food on them around her.

Dancing!

Sharon stands at an outdoor grill, holding the lid up with one hand and a pair of tongs in the other hand.

Grilling!

Can DNRS* cure Lyme disease?

Well, I don’t have a straightforward answer. There are variables.

  1. I don’t consider DNRS (Dynamic Neural Retraining System) a “cure.” I consider it a rehabilitation and recovery program. The difference is that a cure is something that is done to you. You take a pill or you have surgery, and suddenly — shazam! — you are all better. This is not how DNRS works.
    Rehabilitation is a process. It takes effort and commitment. Neuroplasticity-based recovery approaches requires practice, just like other types of rehab programs. If you were learning how to use a leg again after an injury from a car accident, or if you were learning how to eat or write after a stroke, you’d need to practice a lot. With DNRS, as with most rehab programs, you practice, incrementally raising your criteria. Over time, you get more and more skilled, and your brain and body change.
    The end result is yes, that you’re no longer ill. It looks like a cure to others, but for people who have gone through it, we know that we were not cured. We have recovered.
  2. If a person has an active systemic infection, such as Lyme disease, babesiosis, bartonellosis, etc., I think it is unlikely that DNRS or another neuroplasticity-based treatment will lead to their complete recovery. I’ll say more about this below because there are a number of other questions and wrinkles in this topic, but I believe that the best way to treat infection is to kill the infectious bacteria or parasites with antibiotics or other antimicrobials. If someone with chronic TBDs has undergone an aggressive, comprehensive, long-term antimicrobial treatment regimen and still has symptoms, I think neuroplasticity-based treatment will likely help them achieve complete recovery.
  3. If you have already done a comprehensive, long-term antibiotic (and/or antiparasitic) treatment with a Lyme-literate doctor, and you still have chronic Lyme symptoms, then I definitely think DNRS can help you recover completely. This is what I did. I had improvement after my six years of antibiotic treatment for Lyme, babesia, and bartonella, but I was still extremely sick. Doing DNRS is what made it possible for me to turn my life around. I think it is especially likely you’ll do well with DNRS if your Lyme complex also includes any of the following: chemical or fragrance sensitivities, food sensitivities, electromagnetic-field sensitivities, anxiety, or depression.

Which neuroplasticity program do you think helped you the most?

Absolutely the answer to this is the Dynamic Neural Retraining System (DNRS). Although I added a lot of other practices to my recovery plan, it is hard for me to imagine any of it would have been possible without the information, guidance, and inspiration I received from watching the DNRS DVDs. Before I watched those DVDs, I believed it was impossible for me to recover from MCS and CFIDS, and I thought I probably would not ever recover completely from Lyme, either.

DNRS requires the person who wants to recover to change their behavior and their thoughts because we can use the conscious mind to change the function and anatomy of the brain, which then affects other organs and systems of the body. So, most people who use neuroplasticity-based treatment approaches experience a gradual improvement over time. And the improvement requires repeated activities — practice — to change the brain and therefore the body.

Doing DNRS gave me the first big boost of hope, provided me with cognitive tools to approach recovery, and gave me a conceptual scientific and behavioral framework in which to work. When I followed it to the letter and started to have improvements in my MCS, I was then able to think about additional approaches that would complement what I was already doing.

If I have chronic Lyme disease, what should I do? Should I do DNRS? Something else?

My recommendation depends on your situation. There are a lot of variables. My answer often depends in part on people’s answers to these questions…

1. Have you already undergone comprehensive antibiotic therapy?

“Comprehensive antibiotic therapy” does not have a precise definition, of course, but basically I want to know if a person with chronic tick-borne disease has seen a competent Lyme specialist and been on (at least) several months of antibiotics/antimicrobials that target the various different forms of borrelia burgdorferi (cyst form, biofilms, etc.) and also the specific coinfections the person had. This is necessary for a chronic infection or multiple infections. For someone who has simple acute Lyme, recently contracted, they may only need a month or two of antibiotics.

If you have an active bacterial infection, I think the best thing to do is kill the microbes that are causing the infection. While Western medicine does not have the best answer for everything, it has the best answer for some things. Bypasses for blocked cardiac arteries and antibiotics for bacterial infections are two of the best tools Western medicine has to offer.

I do want to include here, as an alternative viewpoint, Lauren’s story. Lauren recovered from a slew of disorders — including POTS, CFIDS, MCS, etc. — using DNRS. Although I didn’t see it on her website, she says that she also had Lyme and coinfections and did not use antibiotics, and she recovered completely anyway. So maybe it is possible to recover from Lyme and other tick-borne infections without antibiotics. To me it seems less likely, but here is Lauren’s wonderful recovery story, so you can see for yourself.

If you have already killed the infection, and you are still sick, then I think it is very likely that retraining the brain will allow you to recover completely. If you have undertaken thorough antibiotic treatment and you still have Lyme or other TBD symptoms, then in most cases I would say you should try DNRS.

If you have not undergone antibiotic therapy because you think antibiotics are dangerous**, or because you tend to have really severe reactions to medications, I would probably say you should do DNRS first instead. Some related questions are below.

2. Do you have have MCS, EMFS, anxiety, or depression along with Lyme and cos, OR did you have fibromyalgia or CFIDS before you got Lyme?

If yes, then I would say that if you haven’t already done hard-core antibiotics and you don’t have a major problem with them, to either go ahead and knock out the infection and then do DNRS, OR — especially if something is preventing you from taking antibiotics — you might want to do DNRS first so that you can recover from the MCS, EMFS, etc., and get relief from those things. If you have any Lyme and coinfection symptoms after that, you can then do antibiotics for whatever is left over.

There are a few benefits to doing antibiotics first:

  • If you don’t have any of the other limbic system injuries/dysfunctions, you might not need to do DNRS; you might recover completely from Lyme just by doing antibiotics!
  • DNRS requires you to focus on recovery and not focus on symptoms, medical management, etc., so it’s much easier to do DNRS if you know that you have already done the one big, obvious thing that Western medicine has to offer for infection, and you are not still looking toward the possibility of medical intervention.
  • A neuroplastic recovery process requires committed, ongoing practice, including changing your behaviors and thoughts, over many months or sometimes longer. It is much, much easier to stick with a plan that requires big changes in behavior if you are being reinforced by having lots of periods of relief from symptoms. If you still have active infection that causes symptoms, it may be challenging to do lots of ongoing brain retraining because you will not be getting as much reinforcement from symptom relief, and you will likely have trouble with the cognitive component of the work. This is the main reason I usually suggest antibiotics first for most people.

There are a few benefits to doing DNRS first:

  • The most common “side effects” I’ve noticed from people who do DNRS are improved mood (increased happiness, reduced anxiety) and a greater sense of empowerment and hopefulness. These are benefits to anyone and can certainly help with the process of recovering from Lyme.
  • Once you have gone through the DNRS recovery program, you will be better equipped to maintain your brain training practice as you go through antibiotic treatment.
  • If you have trouble with antibiotics because of bad reactions to them, doing DNRS should take care of that so that you will later be able to do them if you choose. This is often the deciding factor for why I recommend doing DNRS first for some people with Lyme.

Are there benefits to doing DNRS and antibiotics at the same time?

I don’t yet know of anyone who’s done this, but it’s certainly possible, in theory. I think the most challenging part would be not focusing on symptoms and treatment while undergoing aggressive antibiotic therapy.

What about doing DNRS and antibiotics in some other combination?

Yes, that is possible, too. Recovery is often not a linear process. Someone could start on antibiotic therapy and get through a year or two of that, and then continue on them while starting DNRS. I think this would have many of the benefits I listed for doing antibiotics first, as well as some of the benefits for doing DNRS first. This seems like a really viable option for some.

In many cases, I think the answer is to do a combination of antibiotics and neuroplastic approaches. The order you do those in can vary a lot.

3. Is something preventing or delaying you from doing DNRS?

There are some people who want to do DNRS but haven’t started yet. Usually the reasons for this are one of the following:

  • They are still raising money. For people with very low incomes, such as people on SSI, it can take several months to save up $250.
  • They are actively experiencing fresh or ongoing trauma. It is best not to do DNRS when in the midst of a major trauma or when newly recovering from a recent trauma. This includes things like being abused or assaulted by a family member or partner; having a parent or other important person or family member die recently; or having recently lived through a natural disaster. (If you have a trauma history or are dealing with the on-going stress of a chronic illness, this does not apply, and it’s great to go ahead with DNRS. It will help a lot with these things!)
  • They are trying to get their life or schedule in order to support DNRS and want to wait to start until they can devote themselves to it.
  • They are doing a lot of medical treatment that they’re very focused on, and they want to wait to start DNRS after that is more resolved or takes less attention.

If you’re in one of these situations,  there are other neuroplastic approaches you can take in the meanwhile. These are things you can pursue even if you are doing other Lyme treatment. Any amount of the following have been shown to be good for mental and physical health and to make positive changes in the brain:

  • Yoga
  • Meditation
  • Walking
  • Spending time in nature

Yes, any amount is beneficial! There are studies that show that just five minutes a day of meditating, walking, or spending time in nature are good for your brain and your overall health!

If you can only add one of these things, my vote would go to yoga, if you like movement, or meditation, if you like stillness. The data supporting yoga and meditation promoting wellness and happiness are overwhelming!

I’ve been doing the DNRS recovery program faithfully for a long time, and I’m still sick! Why?

This is sometimes a reason people book a coaching session with me. Now, NOBODY gets well as fast as they want to. I got well at warp speed, and I still was sometimes frustrated and impatient and wanted it to go faster! And it’s definitely not unusual for it to take a year or two or more for some people to recover. Having your recovery take longer than you wish does not necessarily mean you have Lyme! A lot of the time, it has to do with needing to do more practice, do things differently or in a more complete way, or other factors.

But some situations I hear about are like this: The person has MCS, and they do DNRS, and they recover completely from reactions to fragrances and other smells, but they still have achy joints, vertigo, fatigue, migraines, and fevers. These symptoms have not improved. They have incorporated the program completely. They are still practicing every day. They live in the Northeast. I ask them if they’ve been diagnosed with Lyme, and they say, yes, actually a doctor diagnosed them a few years ago, but there were so many other things to deal with, it got lost in the shuffle. And they have never taken antibiotics. They weren’t treated. In this case, I think they should get on antibiotics!

There are wrinkles, though. There are people who have done DNRS, have had MCS symptoms resolve but are not having a complete recovery in some other respects and when I ask them about Lyme, I hear….

  • The doctor who diagnosed them with Lyme was a jerk, so they didn’t trust his diagnosis even though they had a positive Lyme test.
  • Or they had a negative Lyme test, but they know Lyme tests often turn up false negatives, and they did think they had Lyme, but their doctor said they can’t have Lyme if the test is negative.
  • Or they did have Lyme, but they used an alternative treatment they believe in (not antibiotics), so they don’t think they have Lyme anymore even though they have joint pain, fevers, etc.

In all these cases, I think it’s pretty likely these people have Lyme disease (active infection), for which I think they should take antibiotics. This is usually not what people want to hear! And maybe I’m wrong. I would love to be wrong, but I try to do my best to present the information I believe to be most likely to be true.

I hope you have found this post helpful and informative. I welcome your comments and questions!

Footnotes:

*DNRS is Dynamic Neural Retraining System. I have written about it in previous posts and on some of my neuroplasticity pages. It was developed by Annie Hopper to treat multiple chemical sensitivity, electromagnetic field sensitivity, chronic fatigue syndrome, and fibromyalgia. It also happens to work very well for PTSD, depression, and anxiety. I have no affiliation with DNRS and do not make any money from people buying DNRS products. I just think it’s a very helpful recovery tool.
I was also asked by Annie Hopper to further clarify in this way: I am not a certified DNRS Coach. My opinions may differ from those who developed the program or who are certified DNRS Coaches.

**If you have done DNRS: I view the belief that antibiotics are always bad or dangerous as a POP. (If you haven’t done DNRS, “POP” won’t mean anything to you, so please disregard.)


Comments

Lyme Disease and Neuroplastic Recovery — 9 Comments

  1. Sharon ~ your generosity is a gift to all who read your blog. Thank you for taking the time to elucidate your views ~ May your wellness continue in all ways.

  2. Do you think that your MCS might have been caused by TBI from the start? Some people think that because the TBIs dump such a huge amount to toxins in people’s bodies as they die off that it makes people very sensitive to everything else. I also know that many people who get so very ill from these illness have bodies that are unable to detox themselves very efficiently.
    Do you think that by treating your TBIs that it helped you recover from the MCS? I know that these are very complicated illnesses and it is hard to really ever know exactly what helped what and when, but I would love to hear your thinking on what connection, if any, you think there may be between MCS and TBIs.
    I know people who have done all of the things that you have done with the exception of considering that they might have TBIs and while those things have helped them, they have been unable to gain the level of recovery you have. They seem resigned to living the best life they can by avoiding triggers. As you know that can be very limiting and hard on relationships with others. They are not open to the idea that something else might be involved. In one case the person had a Lyme rash and in the other they had a Bartonella rash, neither got much if any treatment for the TBIs.
    I was really happy to find your blog and to hear about your recovery. You clearly left no stone unturned and fought really hard to regain your health. I wish that more people with MCS would consider that they might have TBIs and go to see a good LLMD at least to get them ruled out. My son and I see a LLMD in Ma. and she has treated people with MCS who tested positive for TBIs and the MCS got better as the TIBs did. I think your story is an important one.

    • Hi.
      Thanks for your comments. I’ll reply in the text.
       

      >>Do you think that your MCS might have been caused by TBI from the start?< <  

      No, I don’t. I was sensitive to smells from early childhood. I remember at 5 years old feeling sick from the smells of the insides of cars. That lasted for all of my childhood, long before I got Lyme.
       

      >>Do you think that by treating your TBIs that it helped you recover from the MCS? I know that these are very complicated illnesses and it is hard to really ever know exactly what helped what and when, but I would love to hear your thinking on what connection, if any, you think there may be between MCS and TBIs.< <  

      Well, having Lyme meant that I was in severe pain, exhausted, crazy, and not thinking well. It is very hard to do the kind of thoughtful, clear-headed, intensive cognitive and behavior training that were required when I was that sick, so I definitely think it helped me not to be as horrifically ill as I was to be able to do what I needed to recover.

       
      >>I know people who have done all of the things that you have done with the exception of considering that they might have TBIs and while those things have helped them, they have been unable to gain the level of recovery you have.< <  

      Yes, that’s why I included in my possible scenarios people who have Lyme or other TBDs who do not get them treated and try to recover without antibiotics. While I recognize that it might be possible, I think it’s a lot harder to recover from a severe bacterial infection without antibiotics than with antibiotics.
       

      >>They seem resigned to living the best life they can by avoiding triggers. As you know that can be very limiting and hard on relationships with others. They are not open to the idea that something else might be involved. In one case the person had a Lyme rash and in the other they had a Bartonella rash, neither got much if any treatment for the TBIs.< <

       
      Yes, I am familiar with these scenarios.
       

      >>I was really happy to find your blog and to hear about your recovery. You clearly left no stone unturned and fought really hard to regain your health. I wish that more people with MCS would consider that they might have TBIs and go to see a good LLMD at least to get them ruled out. My son and I see a LLMD in Ma. and she has treated people with MCS who tested positive for TBIs and the MCS got better as the TIBs did. I think your story is an important one.< <  

      Perhaps that is my doctor. 🙂 She was a crucial part of my recovery.

          • She is great, well thought of in the LLMD community, and seems to stay on top of things with TBI research and treatment. We were driving to NY to see a LLMD which is hard when you don’t feel well. We were grateful when we found her so close to home. My son also sees a neurologist in NYC for IVIG because he has nerve damage that caused POTS and CIDP. He has gotten much better but his cognitive recovery was at a standstill. Dr. H. recently tested him for Bartonella with the ePCR test and he was positive for two strains. Hopefully treating him for those will move the ball forward. As you know it is a long slow process, you just have to keep on plugging.

  3. I came across your wonderful website and was wondering if you could please answer a question for me. I was wondering if doing the DNRS program can cause herxing detox/die off reactions especially in those very sick with multiple infections?

    Is it recommended to do only DNRS in these people or should they seek additional treatment? Thank you for your help.

    Sincerely, Courtney

    • Hi Courtney.
      Certainly there were times during my recovery when I would get worse or when I would have a sudden and dramatic burst of symptoms. I remember at least once, for example, my mouth was suddenly full of canker sores.
      I am not a doctor so I can’t give medical advice. In my case, being on several strong and long courses of antibiotics was important for my recovery. For everything that was left over once the antibiotics had done their job (several years), brain retraining was the key to complete recovery.
      All the best on your healing journey.

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