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My Personal Battle With Chronic Lyme Disease

A few months ago I wrote a blog post entitled “The Lyme-Thyroid Connection [1]”.  It was a very detailed post, but one thing I didn’t reveal was the motivation behind it.  The reason why I decided to write about Lyme disease was because the previous month I personally was diagnosed with chronic Lyme disease.  Although I was thinking about revealing that I had Lyme disease in the previous blog post, I decided to hold off for a few reasons.  One reason is because the blog post was long enough without my personal story!  In addition, I figured I’d wait until I went through a few months of treatment (to be discussed below), as I didn’t want current and future patients to be concerned about my state of health.  Before moving on, I do want to say that I currently feel great!

As most people reading this know, I was diagnosed with Graves’ disease.  When I first found out I had hyperthyroidism I was shocked.  Once I started developing symptoms related to Lyme disease I was also quite surprised.  I was probably even more surprised with the chronic Lyme disease diagnosis, as overall I felt like I had been taking good care of my health.  In 2016 I had shingles [2], and without question this was related to stress, as we sold our home and purchased a new one, which was a very stressful process, and then right after moving into our new home I broke my fifth metatarsal.  While 2016 was very stressful, I can’t say that I had abnormally high stress levels in 2018.  In addition, I do block out time for stress management on a daily basis.

You might wonder what having Lyme disease has to do with stress?  After all, this is a condition that is due to getting bit by a tick, right?  While it is true that the bacteria associated with Lyme disease (Borrelia burgdorferi) is commonly transmitted through the bite of a tick, this doesn’t mean that everyone who gets infected with Borrelia burgdorferi will present with the symptoms of Lyme disease.  This is true of other types of infections as well, as the health of the host’s immune system plays a big role in the symptoms they will present with in any infection.  What makes it even more puzzling is that most years I experience some type of temporary head cold, but this wasn’t the case in 2017 and the first half of 2018.  I figured this was a sign that my immune system was in a good state of health.  Apparently I was mistaken.

My Lyme Disease Story

I’d like to go ahead and share my “Lyme disease story”.  In July of 2018 I visited Bear Mountain State Park in New York for a family reunion.  Six days later I developed a mild cold, and I didn’t think much of it.  In fact, that weekend I attended a 3 day nutritional conference, and although I wasn’t feeling 100%, I was able to stay focused and alert.  A few days later I began feeling better.  However, one week after developing the “cold-like” symptoms I began experiencing some neurological symptoms.

The very first neurological symptom I experienced was numbness on the left side of my face.  Coincidentally, when I had attended the nutritional conference, a friend I hadn’t seen for a few years also attended, and he had numbness in his face as well.  This was caused by Bell’s Palsy, which in most cases is caused by a viral infection.  And so when I developed the facial numbness I was thinking that perhaps I also coincidentally had Bell’s Palsy.  I was also concerned about the possibility of a stroke, and my wife encouraged me to call a medical doctor, which I did.  He advised me to go to the ER, and I decided against this, mainly because I didn’t have the risk factors of a stroke, no family history, etc.  I admit I was taking a risk, but I was pretty confident that the numbness I was experiencing wasn’t related to a stroke.

Anyway, in addition to the face numbness, I began experiencing some “electric shock” sensations in my hands and feet, and I realized that something was seriously wrong when one day I experienced weakness in my right leg.  I should backtrack and let you know that when the leg weakness developed I had been taking some anti-viral herbs, as up until the leg weakness I was thinking that it might be some type of virus, perhaps even Epstein-Barr [3].  When I started experiencing the leg weakness I did think of Lyme disease, but I also was concerned that it might be something else, such as multiple sclerosis.  After all, I had Graves’ disease, and having one autoimmune condition increases the risk of developing another autoimmune condition in the future.

The leg weakness started on a Saturday, and on that Monday I scheduled an appointment with a local functional medicine practitioner (her name is Carrie) who has a lot of experience working with Lyme disease patients, and she also had personally dealt with chronic Lyme disease herself.  Like me, she also went through the Institute for Functional Medicine certification.  The problem was that I would have to wait a few days to see her, and while this wasn’t too long of a wait, I decided that I would keep my appointment with Carrie, but I saw another doctor on that Monday.

This turned out to be a waste of time, as not only didn’t he think I had Lyme disease (since I didn’t have classic Lyme disease symptoms, a bull’s-eye rash, etc.), but he wanted to refer me to a neurologist.  To be honest, this wasn’t too surprising, and I should have known better.  I was just impatient and was hoping to find answers sooner than later.  I also wasn’t 100% certain I had Lyme disease, but if I did have it then I wanted to get this addressed as soon as possible, and so I chose not to see a neurologist.  Keep in mind that if I did have Lyme disease I was suspecting that I might have “acute” Lyme disease, and not “chronic” Lyme.

Why Did I Suspect That I Had Lyme Disease?

I think it’s important to talk about the decision not to see a neurologist, as many people with Lyme disease had made this mistake initially.  And in some cases it led to their condition becoming debilitating.  This is the reason why I decided not to go to a neurologist, as while I wasn’t sure if I had Lyme disease, I figured that if I had multiple sclerosis or something else then it can wait a few weeks, but if I had acute Lyme disease this needed to be treated as soon as possible.

Not seeing a neurologist turned out to be a good decision in my case, as if I had chosen to see a neurologist first I not only would have had to wait at least a few weeks, but I probably would have spent thousands of dollars on unnecessary testing.  In the blog post I wrote on Lyme disease in September I spoke about how Lyme disease can mimic multiple sclerosis, and so there is a chance that I might have been falsely diagnosed with multiple sclerosis, or perhaps another condition.  Another possibility is that after extensive testing by the neurologist everything would have come back negative, and I would have been back to square one.

Of course I’m not criticizing those with chronic Lyme disease who initially chose to see a neurologist first.  They were just following the recommendations of their doctor.  It admittedly can be a tough decision to make, as if someone is experiencing neurological symptoms it of course is understandable why they would choose to see a neurologist sooner than later.  But since I was familiar with Lyme disease I went with my gut instinct and decided not to see a neurologist.  So I’m not trying to discourage anyone from seeing a neurologist, but if there is even a small possibility that your symptoms might be related to Lyme disease then it’s important to look into this, and not to delay for too long.

My Appointment With The Lyme Disease Specialist

I saw the functional medicine practitioner on a Thursday morning, and my wife accompanied me.  The appointment lasted well over an hour, as it included a consultation and exam.  I also ended up getting some blood work.  At the time Carrie also thought I had ACUTE Lyme disease, and I had to decide whether or not to take antibiotics.  Just a reminder that prior to the appointment I was taking some antimicrobial herbs, and I got a little more aggressive when my leg weakness developed.  Overall I was taking the herbs for about 2 weeks, and they didn’t seem to be helping with the neurological symptoms.  And to be honest, I came to the appointment knowing that there was a good chance that antibiotics would be recommended, and I made the decision to take them…specifically Doxycycline.

So I took Doxycycline while waiting for the results of the tests.  I’m sure some people will frown upon my decision to take antibiotics, and I admit it wasn’t an easy decision.  I will say that I’ve mentioned in the past how taking antibiotics might be a good idea for ACUTE Lyme disease, and since I thought my Lyme disease was acute I figured the “benefit” of eradicating the infection and preventing the development of chronic Lyme disease outweighed the risks of the antibiotics disrupting my gut microbiome.  The truth is that I was afraid of developing chronic Lyme disease after working with some patients who had it and seeing how debilitating it could be.

Two weeks after starting the Doxycycline I had another consultation with Carrie, and this is when I found out I didn’t have acute Lyme disease, but CHRONIC Lyme disease!  Although my practice focuses on thyroid and autoimmune thyroid conditions, I’ve had patients who also had chronic Lyme disease, and some of them had been on antibiotics for years!  I knew I wasn’t going to follow this route, as I was upset enough that I took the Doxycycline for 2 weeks.

Herbs, Antibiotics, UV Light, and Ozone Therapy

After finding out I had chronic Lyme disease, Carrie told me there were a few different treatment options.  I can take an herbal/homeopathic approach, I can take antibiotics for a few months, or I can receive UV light and ozone therapy.  I asked her what treatment she recommended, knowing that there was no way I was going to take antibiotics on a long term basis.  She recommended UV light and ozone, and so this is what I decided to do.

Although I heard some great things about ozone, I also had heard stories of people with chronic Lyme disease who felt great after a few months of treatment with ozone, only to have their symptoms return.  I decided to go this route anyway, understanding that at the same time I would have to work on further improving my immune system health.  Of course I thought my immune system was in a good state of health, as while I did deal with shingles in 2016, overall I’ve been healthy, and I have been in remission from Graves’ disease since 2009.

You might argue that getting Lyme disease wasn’t under my control, as I was bit by a tick.  While this might be true, the fact is that I had chronic Lyme for a period of time, yet for some reason didn’t experience symptoms until a later date.  I discussed this earlier when I spoke about how the host’s immune system plays a big role n the development of symptoms.

How Do I Currently Feel?

As I mentioned in the opening paragraph, I currently feel great!  However, I must admit that I never felt terrible to begin with, which is why the medical doctor who wanted to refer me to a neurologist didn’t think it was Lyme disease.  Throughout this process I have never felt fatigued, which is very common with Lyme disease.  And while I had some “electric shock” sensations in my hands and feet, this was intermittent, whereas many people with chronic Lyme disease have severe pain.  Even the numbness in my face was pretty mild.  I can’t say the same about the weakness in my right leg, which is what prompted me to schedule the appointment with Carrie.  Fortunately I only experienced the weakness in my leg a few times, and as of writing this post I haven’t had this symptom since September (knock on wood!).

Overall I can’t complain, as while I wish I didn’t have Lyme disease, I’m very grateful that my symptoms haven’t been severe thus far.  Plus, similarly to when I was diagnosed with Graves’ disease, I feel that being diagnosed with Lyme disease will force me to learn more about this condition.  While I think my focus will always be to help those with Graves’ disease and Hashimoto’s, I’m confident that my experience will benefit those with thyroid and autoimmune thyroid conditions who also have Lyme disease.  What’s scary is that there is a good chance that some of my current patients have chronic Lyme disease and don’t know it, just as was the case with me.

How Did I Develop Chronic Lyme Disease?

You might wonder how I developed Lyme disease in the first place?  I have no idea, as I don’t recall ever getting bit by a tick or having a bull’s-eye rash.  It’s also important to know that there is evidence of Lyme disease being transmitted by fleas and biting flies as well.  Either way, apparently I had gotten bit by a tick, flea, or biting fly in the past, and what I think happened is that when I went to Bear Mountain State Park this summer I got another tick bite.  That evening my dog was all over me, and so it’s very possible that there was a tick on him and he passed it on to me.

Anyway, my theory is that I somehow got infected in the past, but my immune system kept the infection in check until getting bit by a tick when visiting Bear Mountain.  Of course there is no way to prove this, as I didn’t have the classic “bull’s-eye” rash, but it makes sense since my symptoms started approximately one week after visiting Bear Mountain.  Plus, as I mentioned in the previous blog post I wrote on Lyme disease, many people with Lyme disease never present with a bull’s-eye rash.

Some people reading this know my staff person Kate, and when I suspected I had Lyme disease her initial reaction was “no way!”  Her husband gets exposed to ticks frequently when he’s working, while I’m in an office setting most of the time.  But it’s just another lesson that anyone can get Lyme disease.  We do have two dogs (we have cats too but they stay indoors), and so besides potentially getting exposed this past summer in New York, it’s also possible that over the last few years I got exposed to one or more ticks.  Or perhaps the first exposure was through a flea or biting fly.

I Also Tested Positive For Bartonella

Most people with Lyme disease also have one or more coinfections.  This was the case with me, as I tested positive for Bartonella.  Bartonella is a type of gram-negative bacteria, and while it can be transmitted through the bite of a tick, it also can be transmitted through cat scratches, and thus is sometimes referred to as “cat scratch disease”.  I do have three cats, and so I suppose it’s possible that it was transmitted this way, but as I just mentioned, it also can be transmitted through the bite of a tick.  For the Bartonella I was advised to take a homeopathic formula for 2 months.

Concern With A Graves’ Disease Relapse

When I was officially diagnosed with Lyme disease, one of my main concerns was that it would potentially re-trigger my Graves’ disease condition.  And while I didn’t feel any overt hyperthyroid symptoms, I did order a thyroid panel with antibodies shortly after being diagnosed with Lyme disease, and I’m thankful that everything looked fine.  Of course this doesn’t mean that I’m in the clear yet, as it probably would be a good idea to do a thyroid panel with antibodies at least one or two more times in the near future, just to be on the safe side.

What Would I Have Done Differently?

I don’t really have any regrets so far, although if I knew that I had chronic Lyme disease I wouldn’t have taken the antibiotics and I instead would have started with UV light/ozone therapy right away.  Sometimes I do wonder if I should have taken a “Lyme-focused” herbal approach instead of the UV light/ozone therapy.  Although I did take some herbs when I first started experiencing symptoms, they were more specific for viruses, although I also added an herbal antimicrobial called Biocidin, which in some cases can help with chronic Lyme.

My Current And Future Treatment Approach

While I’m currently receiving UV light/ozone treatment every other week, I also started taking some herbs that are recommended by the herbalist Stephen Buhner in his excellent book “Healing Lyme”.  Since the Doxycycline no doubt disrupted my microbiome, further compromising my immune system, I’ve also been working on restoring my microbiome health and doing things to promote gut healing.  And of course I’m making sure to eat well, manage stress, get plenty of sleep, minimize exposure to environmental toxins, etc.  I thought I was doing a good job in these areas before, but I’m doing an even better job now.

Advice For Others With Chronic Lyme Disease

As for what advice I have for others with chronic Lyme disease, I’ll just remind you that while addressing the infection is important, it’s even more important to focus on improving your immune system health.  And while taking antibiotics sometimes is necessary, especially when someone has acute Lyme disease, if you have chronic Lyme disease you need to strongly consider the pros and cons of long-term antibiotic use.  I felt bad enough taking the Doxycycline when I thought my Lyme disease was acute, but there are some people who are on antibiotics for months or years.

Without question antibiotics can be a blessing when it comes to acute infections, and I’m not just talking about Lyme disease, but other types of infections that can be serious, and in some cases even life-threatening.  On the other hand, we can’t ignore the impact that antibiotics have on the good bacteria of the gut.  Even taking antibiotics for one or two weeks can significantly disrupt the microbiome, let alone taking them for many months or years.

So for those reading this who currently have chronic Lyme disease, if you aren’t taking antibiotics that’s wonderful!  Try everything you can to avoid taking them in the future.  If you took antibiotics like me, even for a short period of time, then hopefully you took time to restore your microbiome health, which doesn’t just mean taking high potency probiotics for a few weeks (although taking high potency probiotics is also a good idea).  Perhaps restoring the microbiome is a topic I will discuss in a future blog post in 2019.

For those who currently have chronic Lyme disease and have been taking antibiotics for a few months or years, I hope that one of your goals in the near future is to devise a plan to wean off of the antibiotics.  This very well might mean working with a natural healthcare practitioner who focuses on Lyme disease.  I’ll add that I have worked with a few patients who were seeing some alternative-minded medical doctors who focused on Lyme disease, yet still took antibiotics for months or years.  If this describes you then it might be time to switch to a different practitioner.

Should EVERYONE Get Tested For Lyme Disease?

I have no idea how long I was dealing with chronic Lyme disease, as it could have been a few months, or a few years.  Either way, based on my experience, you might wonder if everyone should be tested for Lyme disease.  First of all, I would read my blog post from September, as I talk about testing, including possible false negatives.  In other words, a negative ELISA and/or Western Blot won’t always rule out Lyme disease.  Some labs are better than others, as many practitioners use IGeneX [4], which is a lab I considered using, but Carrie recommended Medical Diagnostic Laboratories [5].

Sometimes I do wonder if it would have made a difference if I knew I had chronic Lyme disease sooner.  For example, while I was already living a pretty healthy lifestyle, if I knew I had Lyme disease even a few months sooner perhaps I would have started taking the herbs recommended by Stephen Buhner, which might have prevented the onset of symptoms.  Of course there is no way of knowing this for certain, but I’m bringing this up because while everyone reading this should already be living a healthy lifestyle, some people aren’t, and if you were to find out you had Lyme disease ahead of time you might be more strict with your diet, make sure you’re getting enough sleep, blocking out time for stress management, etc.  Once again, I realize that some people are already doing this, but many people aren’t.

At the same time I don’t want everyone reading this to become paranoid and think that they have Lyme disease.  The truth is that we all have microbes in us that can be potentially pathogenic.  For example, most adults have Epstein-Barr in their body, and while in many people it is inactive, if you don’t take care of your health it can reactivate and cause a lot of problems.  As I mentioned earlier, Lyme disease wasn’t the only pathogen I’ve dealt with recently, as in 2016 I had shingles, which no doubt was a consequence of extreme stress, and I discussed this in a blog post I wrote entitled “Can Shingles Trigger Graves’ Disease and Hashimoto’s? [2]”.

What Can You Do To Prevent Yourself From Getting Lyme Disease?

In order to prevent yourself from getting Lyme disease, you obviously want to try everything you can to minimize your exposure to ticks.  Of course this is easier said than done, although when hiking you can try to avoid walking across grassy fields, wear long pants and socks, inspect your clothes and skin for ticks, etc.  Just a reminder that your dogs and cats can pass ticks onto you, and they can also be infected by ticks.

Oil of lemon eucalyptus can also be used as a tick repellent (1) [6].  So can chemical repellents containing DEET, but I’d stick with the essential oils!  Stephen Buhner also has formulated this tick repellent [7], and he says that the primary herb for prevention is astragalus, and to take a minimum of 1,000 mg per day if you live in a Lyme endemic area.  I will say that there is some controversy over using astragalus in those with autoimmune conditions such as Graves’ disease and Hashimoto’s.

If you have already been bit by a tick and discover it while it’s still attached, use a tick removal device to release it from your skin.  According to Stephen Buhner, applying Andrographis tincture [8] as soon as the tick is removed can be effective.  As a result, it might be a good idea to have some Andrographis tincture handy.

Even if you don’t have Lyme disease I hope you found this post to be interesting and informative.  If you have any questions or comments based on my “Lyme disease story” (or your “Lyme disease story”) please post them in the comments section below.