Podcast - My Chronic Lyme Disease Story

My Chronic Lyme Disease Storyadmin2022-07-21T23:16:54-04:00

EPISODE 41

During this episode you’ll learn:

• The pros and cons of UV light/ozone therapy for treating Lyme disease
• The significance of negative test results
• What you should do if you have a negative test result
• The three stages of Lyme disease
• Symptoms associated with Lyme disease
• Other tick-borne coinfections worth testing for
• Whether or not herbs can help with Lyme disease
• How Lyme disease relates to thyroid health

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Here is the transcript for this episode:

Welcome back to the Save My Thyroid podcast. This is Dr. Eric Osansky. In this episode, I am going to share my Lyme Disease story. Even though this took place 10 years after my Graves’ Disease diagnosis, a lot of people have Lyme, and in some cases, it can trigger autoimmune conditions such as Graves’ or Hashimoto’s. Unfortunately, many times it can take years for people to get diagnosed with Lyme when they have it. Who knows how long I had chronic Lyme for? I definitely had it for a period of time before it was diagnosed.

Let’s dive into my Lyme Disease story. In July 2018, I was visiting my family in New York, and we had a family reunion that year. I visited Bear Mountain Park. Six days later, after I returned home to North Carolina, I started developing a mild cold. One week later, I started experiencing some neurological symptoms. One of the main symptoms I first experienced was numbness in the face. I was getting these shocking sensations.

About a week later, when I was with my daughter, we went to an arcade. It was like an indoor/outdoor arcade. The indoor part was where the games were, and outside, there were some rides. We were walking outside, and I started getting weakness in my right leg, which was very scary at the time. I knew before that that something was up, but that was probably the scariest moment in my Lyme journey.

Unlike many other cases of Lyme, I didn’t experience fatigue. Fatigue is very common in Lyme, sometimes debilitating. I didn’t have migrating muscle and joint pain. I did have some migrating neurological symptoms. That is what let me think it might be Lyme. I wasn’t sure, but I was leaning in that direction. I was thinking it might be multiple sclerosis when I had weakness in the leg. The symptoms are a little bit unpredictable, so that’s why I also thought about Lyme. I did have patients with Lyme even though I wasn’t working with them for their Lyme condition at the time. Over the years, I’ve had patients with Graves’ and Hashimoto’s who had Lyme. I noticed that pattern of weak symptoms and neurological symptoms.

In my experience, there was no evidence of a tick bite, no bull’s eye rash. That’s why I wasn’t sure if it was Lyme. Based on the symptoms, I was thinking of it as a possibility. Either way, after experiencing the weakness in the leg, I contacted a medical doctor.

I first contacted a medical doctor when I experienced the numbness in my face. It was left side facial numbness. He was concerned that I was maybe having a stroke, so he told me to go to the emergency room, which I did not do. It was a risk I was taking. I figured they would just do testing that would be very expensive, and I didn’t have health insurance at the time. If I thought I was having a stroke, I would have gone, but I didn’t have the family history of cardiovascular disease, and I took good care of myself.

After not deciding to go to the ER, I think I waited for about a week. That is when my leg numbness happened. When the leg numbness happened, I scheduled an appointment with a general practitioner. He wanted to refer me to a neurologist. He did not want to do Lyme testing. I did bring it up even though it might not have been accurate because he would have just done the bare basics at a local lab like a Quest Diagnostics or Labcorp. He didn’t want anything to do with Lyme because I didn’t have the classic symptoms: no evidence of a tick bite or bull’s eye rash. I did not want to go to a neurologist. I would have been open to seeing a neurologist if I had a negative diagnosis of Lyme. But I wanted to at the very least rule that out.

I scheduled an appointment with a local Lyme specialist. I found her online. It was a functional medicine practice that was only 10 minutes from where I live as well as where I work. It was a perfect location, as it was in Matthews, North Carolina. The practitioner had experience with Lyme. I went ahead and scheduled an appointment with them. In the meantime, I did take some antimicrobial herbs. I wasn’t sure what I was treating. When I first started experiencing numbness in the face, I was thinking it was viral, like Bell’s Palsy for example. I was taking some antimicrobial herbs, some of them with antiviral properties. That was what I was doing before I saw this practitioner.

As far as my appointment with the Lyme specialist, I mentioned that the practitioner I saw dealt with chronic Lyme personally. She is a physician’s assistant. She works under a medical doctor. Their practice doesn’t just focus on Lyme, but focuses on other types of chronic health conditions like toxic mold, etc.

Initially, when I saw the practitioner, we both thought it was acute Lyme. When I was thinking it was Lyme, I didn’t think chronic. I was thinking I got bit by a tick when I was in New York. There was no evidence, but it made sense. I was in Bear Mountain. It’s a common area for ticks. We brought our little dog with us to New York, and he went to the park. That night, he was all over me. So I was thinking I must have gotten bit by a tick and didn’t know it and thought it was acute Lyme.

Should I take antibiotics? It was a tough decision. I did end up taking doxycycline because I thought it was acute Lyme. Prior to my diagnosis, I wrote articles and did research online in relation to thyroid health, and I mentioned that would be one situation where I very well might take antibiotics because I was really terrified of getting chronic Lyme. After seeing patients in my practice with chronic Lyme, not treating them for Lyme, but seeing them with Graves’ or Hashimoto’s and also Lyme, and seeing how bad some of these side effects were, I wanted no part of chronic Lyme. I took the doxycycline for a couple of weeks.

I did some blood testing. The blood testing I did for Lyme and coinfections was through a company called Medical Diagnostic Laboratories based out of New Jersey. I was thinking there is a lab called iGeneX; they are well known for Lyme testing. I did run that by the practitioner because I was familiar with them. They are kind of expensive, and she had experience with MDL, so we decided to start with them first, moving onto the other one if I got a negative. False negatives are common with Lyme. I did a blood draw and got the results back. Sure enough, I found out I had chronic Lyme. I also had other coinfections like bartonella.

I want to talk more about my decision to take antibiotics. It’s something that I didn’t take lightly. No surprise, I’m not a big fan of antibiotics. I’m sure a lot of people listening to this are not a big fan. I don’t think anybody wants to take them, but for some people, it’s not a big deal. I wish I could say my father is alternative, but he is not, so he has no problems taking antibiotics. Throughout his life, he probably has taken antibiotics multiple times when he probably didn’t need to.

Everything comes down to risk versus benefits. I was thinking it was acute Lyme. If I had known it was chronic Lyme, I wouldn’t have taken it. I didn’t want to wait because if I waited a couple weeks for the results to come in- I figured it was acute now, but in a couple of weeks, the chance of it becoming chronic is greater. I wanted to take action.

I am not suggesting that everyone with acute Lyme should take antibiotics. You might fall into a similar situation as myself where you think it’s acute, but you’re not sure. Obviously, if you went to the woods or a park, and then you got a tick bite or bulls eye rash, maybe you could conclude that it’s acute. It’s still not an easy decision. There are herbs like astragalus. It’s an herb recommended by different practitioners. Herbalist Steven Buhner says 3,000mg a day in acute situations of Lyme. I’m not positive about that. There are natural alternatives. I’m not recommending doxycycline to most people with acute Lyme. You will have to make that decision for yourself.

When I found out I had chronic Lyme, I stopped the doxycycline. I was pretty much done with the course anyway. The practitioner I was working with gave me a few different options. One of those options was UV light combined with IV ozone therapy. I was actually familiar more so with IV ozone therapy because I was doing some research and saw people who had all these conditions and received amazing results. I also heard people would get it, and a few months later, it would come back. I knew it wasn’t a cure for Lyme, so I wasn’t thinking about it that way. I was thinking about it as something I would try to get it in check, and I could do other things to help my body further and not continuously take the IV ozone and UV light. Quite frankly, they are expensive treatments.

One of the main benefits of UV light/ozone therapy is they can be very effective in helping with the symptoms associated with Lyme as well as other chronic infections. The downside is that once again, they are expensive, and it’s not a permanent solution. I decided to go through the treatment. It turned out to be a really good decision.

Now I’d like to discuss some facts about Lyme. Lyme is the fastest growing infectious bacterial disease in the United States. According to the CDC, approximately 30,000 cases of Lyme are reported by state health departments each year. The CDC suggests that the actual number of people diagnosed with Lyme in the United States alone is around 300,000. There are many people who have Lyme but have not been diagnosed. That was my situation.

If I listened to my primary care doctor, who knows? Maybe I would still have been undiagnosed. He wanted to send me to a neurologist, who probably wouldn’t have found anything. Maybe he would have. Sometimes on the MRIs, it might look like MS, but it is Lyme. Maybe the neurologist would have eventually diagnosed me. I’m not sure. I know there are a lot of people who go to specialists and are not diagnosed with Lyme even though they have it.

Fewer than 50% of patients with Lyme recall any rash. When Lyme is untreated, more than 50% of all sufferers will develop sporadic arthritis bouts. I didn’t know that statistic when I dealt with Lyme. Another reason why you don’t want to wait too long when it comes to treating Lyme.

Approximately 20% of chronic Lyme patients are initially misdiagnosed with neurological disease. That’s why I said you don’t want to- I’m not saying not to go to a neurologist. Even if you go to one, you need to keep an open mind. It depends on the situation. You probably want to see some type of healthcare practitioner pretty quickly. I would recommend seeing some type of functional medicine practitioner quickly. With a neurologist, it could take a few weeks or months just to see one alone. By that time, it could be really bad, assuming it is Lyme.

The way I think of Lyme is it is more of an immune problem, not an ongoing infection problem. There is an infection obviously, but you want to do things to optimize your immune system. It doesn’t mean you don’t want to treat the infection. In my situation, I did treat the infection as well as do things to further improve my immune system. I thought I already had a pretty healthy immune system because of my experience with Graves’. Apparently, that wasn’t the case.

You might be wondering why is this relevant to you? I mentioned at the beginning why I decided to record this. First of all, the bacteria associated with Lyme, which is Borrelia burgdorferi, can lie dormant for months or even years.

Another reason is you might experience a tick bite in the future. Obviously, I am not suggesting that everybody listening to his has Lyme. In the future, you might develop it. It might be something where you get a tick bite, and you don’t know about it, but it could also be a situation where you get a tick bite and know about it right away.

Another reason may be that you don’t have Lyme now, and you will never get Lyme. Hopefully you won’t, but perhaps you have a family member or friend who gets it. This information could be beneficial for someone you know.

As far as negative test results, keep in mind it takes time for antibodies to form after you get bit by a tick that has Borrelia burgdorferi and develop Lyme. Some people have depressed immunoglobulins; these are antibodies, but they also can lead to false negative results. You can test immunoglobulins. There is serum immunoglobulin A, immunoglobulin G, and immunoglobulin M. Taking antibiotics or natural antimicrobials can cause a false negative. Fortunately, it didn’t in my case. I said early on I was taking some natural antimicrobials. It very well could have caused that false negative, but it didn’t.

Also, you need to keep in mind there are multiple strains of Borrelia burgdorferi. If you go to a lab that is looking at one strain, even Medical Diagnostic Laboratories only looks at a couple of strains. That’s another reason for a false negative.

What should you do if you suspect you might have Lyme, but you have a negative test? Is there evidence of a tick bite? If there is, and/or you have the classic bull’s eye rash, and you have all these crazy symptoms, it very well might be Lyme. If there is no evidence, it’s up to you. You also need to keep in mind it could be another type of coinfection. It could be bartonella or babesia, especially if you have symptoms like night sweats. Especially if you have hyperthyroidism or hormones going into perimenopause, post-menopause, night sweats could mean that, not be babesia.

If you have a negative test, you might need to consider other types of testing. You might need to think about if you were taking a type of antimicrobial or antibiotic. Another reason to work with a practitioner who has experience dealing with Lyme and coinfections.

Next, I’d like to discuss three stages of Lyme. There is acute Lyme, early disseminated Lyme, and chronic Lyme. As far as the symptoms associated with Lyme, there could be a lot of different symptoms: low grade fever, which I developed a mild cold and did have a little bit of a fever a week after visiting Bear Mountain. Flu-like symptoms, more on the mild side; I wouldn’t say severe. Low-grade fever; chill; headaches; neck stiffness; fatigue; migrating muscle and joint pain; partial facial paralysis; cognitive problems, including brain fog, lightheadness; sleep disturbances; heart complications such as palpitations, which are also common with hyperthyroidism; weakness; eye symptoms, like blurry vision or eye pressure. Many people with hyperthyroidism have thyroid eye disease. Might be hard to differentiate. Numbness and/or tingling, which I did have. Shooting pain; shortness of breath; weight gain; weight loss; bladder dysfunction; digestive issues.

There could be a lot of symptoms. Most of these symptoms I did not have. Some people have a lot more than I do. Some people have most of the symptoms. Some people just have a few of them. You can’t just go by symptoms alone because there is a lot of overlap. If someone has Hashimoto’s or Graves’, they might have fatigue associated with the condition. I work a lot with patients who have fatigue. Doesn’t mean most of those patients have Lyme.

There are also tick-borne coinfections like anaplasma. I mentioned I had bartonella. Babesia is another one. Chlamydia is another one. Ehrlichia. Mycoplasma. Rickettsia. You don’t want to ideally test just for Lyme but for other coinfections, too. I wasn’t thinking about that. Even though I wrote an article talking about Lyme and coinfections before my own experience, I was really focused on the Lyme. When I saw the practitioner, she had a lot of experience, and she definitely made sure that I tested for those coinfections as well.

Can herbs eradicate Lyme? One thing that came to mind is that everyone does not respond to the same herbs, and this is with any type of condition, not just Lyme. I work with a lot of patients who have SIBO. For some people, certain herbs work great, and for others, they don’t work well. Same with candida overgrowth and infections like H-pylori. Candida and SIBO aren’t infections; SIBO is too much bacteria in the wrong place, and candida is part of our normal gut environment. You don’t want an overgrowth of candida.

When it comes to using herbs, you want to make sure the dosage is high enough. In some cases, especially with acute Lyme, a combination of antibiotics and herbs might be a good approach. I would work with a practitioner on that. Obviously, you need to work with someone who can prescribe antibiotics if you go down that path. I wouldn’t just take them randomly. If you’re taking antibiotics, I wouldn’t decide to take astragalus on your own. I would check with a doctor. A regular doctor probably won’t recommend to take it. Another reason to work with a functional medicine practitioner.

I just mentioned acute Lyme, but can herbs help with other stages? I mentioned two other stages. Especially when it’s chronic, they will work, but if all you do is take the herbs, chances are you’re not going to have success. You need to optimize other areas of your body. That is the case with any health condition. If someone with Graves’ or Hashimoto’s just wants to take herbs and supplements, and you don’t want to do other things from a diet and lifestyle standpoint, they are not going to get optimal results.

You might be wondering what herbal protocols are available for chronic Lyme. I am not going to get into detail here. There are some out there, like some well-known herbal protocols. There is the Zhang protocol and the Cowden protocol. Steven Buhner is a well-known herbalist with his own protocol. You could do some searching to find these protocols. Steven Buhner has some books, too, where he goes into detail. Byron White has their own product formulations to help with chronic conditions. You could do some searching, but I would work with someone else, as I keep on saying. There are a lot of books. Healing Lyme by Steven Buhner is one you want to check out. Other books could be helpful, too. Also, Bio Botanical Research has some products.

I practice what I preach. I am not saying to work with me. I am not a Lyme specialist. When I dealt with Lyme, I didn’t try to self-treat it. I decided to work with someone.

When it comes to Lyme and thyroid health, as I mentioned earlier, Borrelia burgdorferi is the pathogen associated with Lyme. In some cases, this can be a potential trigger of thyroid autoimmunity. One way it can do this is through a molecular mimicry mechanism. This involves a similarity between the amino acids of Borrelia burgdorferi and the amino acids of the thyroid gland. In my situation, that wasn’t the case because I was diagnosed with Graves’ in 2008 and then 10 years later, 2018, is when I was diagnosed with Lyme. In other cases of Graves’ and Hashimoto’s, it can be a potential trigger.

I mentioned I had bartonella. There is evidence that bartonella can trigger autoimmune thyroiditis as well.

Not everything is in the research, but mycoplasma is another coinfection. The mycoplasma species may also be a factor in some cases of Graves’ and Hashimoto’s.

When it comes to other treatment options for Lyme, there is homeopathy. I did take some through a company called DesBio. I mentioned the ozone therapy. In my case, I did IV ozone therapy. There are other ways of administering ozone therapy, too.

There is hyperbaric oxygen therapy. The practice I went to did offer that. If the ozone didn’t work, I would have considered the hyperbaric oxygen therapy. If you are claustrophobic, you might have problems with that. But it is an option.

I did some learning about peptides. I did do an interview recently with Dr. Anshul Gupta, who spoke about peptides. The episode focused mostly on triggers of Graves’ and Hashimoto’s, but toward the end, he spoke about peptides. I’m pretty sure he spoke about a specific peptide for Lyme.

You also want to address triggers and balance other compromised areas. The adrenals. You want to eat well, get sufficient sleep, manage stress. The mitochondria are the energy powerhouses of our cells, and nutrients are very common. Eating whole healthy foods and supplementing when necessary is important for healthy mitochondria.

Decrease your toxic load. Unfortunately, we live in a toxic world, so you always want to be doing things to reduce your toxic load.

This entire podcast is focused on helping you to find triggers, balance other compromised areas. I am not going to go into detail about that here, but you can learn about this in other episodes. The only thing I will say in conclusion is that in the case of chronic Lyme and coinfections and even other types of infections like viruses, like Epstein-Barr, you don’t want to just focus on eradicating the infection. You always want to do things to improve your overall health.

That’s pretty much all I want to discuss regarding my story. In the future, I’m sure I will discuss this again. I do plan on having interviews with experts who work with Lyme. Maybe the person who helped me would be willing to get on the podcast. Once again, that’s all I want to discuss regarding my Lyme story. I hope you learned a lot. I look forward to catching you on the next episode.