In the last blog post I spoke about shingles and the varicella-zoster virus. In this blog post I’m going to talk about a different type of infection, and while you might not think Lyme disease is factor in your health, the truth is that many people have Lyme disease and don’t know it. According to the CDC, approximately 30,000 cases of Lyme disease are REPORTED by state health departments (1). However, the CDC suggests that the actual number of people DIAGNOSED with Lyme disease in the United States alone is around 300,000. And there are many more people who have Lyme disease but have not been diagnosed.
Once again, many people with thyroid and autoimmune thyroid conditions won’t think this article is relevant to them because they’re confident they don’t have Lyme disease. But this blog post may be one of the most important ones you have ever read for the following three reasons:
Reason #1: The bacteria associated with Lyme disease (Borrelia Burgdorferi) can lie dormant. While many people feel symptomatic immediately after being bitten by a tick that has Borrelia Burgdorferi and other coinfections, some people don’t experience symptoms until months or years later. In other words, Borrelia Burgdorferi can lie dormant in your body, which means that some people have chronic Lyme disease and don’t know it.
Reason #2: You might experience a tick bite in the future. Assuming you don’t currently have Lyme disease, there is always a risk of getting it in the future. And as I’ll discuss below, it doesn’t matter where you live or how cautious you are. Sure, some areas are safer than others, and if you are taking certain precautions then without question this will greatly reduce the chances of you getting Lyme disease and/or its associated coinfections. So my goal isn’t to make you feel paranoid about getting Lyme disease, as I just want to increase your awareness.
Reason #3: You might have a family member or friend who gets Lyme disease. Remember that approximately 300,000 new cases of Lyme disease are diagnosed in the United States alone. And arguably there are hundreds of thousands more that aren’t diagnosed. So in your lifetime there is a strong likelihood you’ll know someone with Lyme disease, and while you might think there is nothing you can do to help them, encouraging them to read this blog post might be a game changer.
Why A Negative ELISA or Western Blot Test Doesn’t Always Rule Out Lyme Disease
If you suspected Lyme disease and did some testing which came back negative, keep in mind that false negatives are very common for the following reasons:
- It takes time for antibodies to form. If acute Lyme disease is suspected you need to keep in mind that after someone gets bit by a tick and contracts Borrelia Burgdorferi (and other coinfections), it takes 4 to 6 weeks for antibodies to show up on one of these panels. So for example, if someone gets bit by a tick and gets tested within the first 3 weeks, we would expect these test results to come back negative, even if the person has Lyme disease. The earliest we’ll usually see these tests come out positive is 4 weeks after being bit by a tick.
- Depressed immunoglobulins. Immunoglobulins are also known as antibodies. If someone has a compromised immune system this can lead to one or more depressed immunoglobulins, which once again, can lead to a false negative result. Fortunately you can test the immunoglobulins separately through the blood. The ones you want to focus on are immunoglobulin G (IgG) and immunoglobulin M (IgM). If one or both of these are depressed it can cause false negative results on the ELISA or Western Blot. This is one reason why some people with chronic Lyme disease will test negative.
- Taking antibiotics and/or natural antimicrobials can cause a false negative. If you have acute Lyme disease then taking antibiotics or natural antimicrobials can potentially eradicate Lyme disease and its coinfections, and of course this can result in a “true” negative result, which would be great news. However, taking these agents can also cause a false negative result, which isn’t a good thing.
- There are multiple strains of Borrelia Burgdorferi. Conventional panels only test for a single strain of Borrelia Burgdorferi, and so if you don’t have this strain then your Western Blot test will come back negative. So just to clarify, you can have Lyme disease but test negative because the panel isn’t testing for the specific strain of Borrelia Burgdorferi that you have.
What To Do If You Have a Negative Test
So what approach should you take if you suspect that you have Lyme disease, but both the ELISA and Western Blot have come out negative? Well, it depends on the situation. If you know you have been bitten by a tick recently and it’s been less than six weeks, then you now understand that false negatives are not only common, but are likely. Regardless of whether the testing is positive or negative, if you know for certain you were bitten by a tick and/or have the classic bull’s-eye rash, then it would be a good idea to seek treatment, which I’ll discuss later in this post.
But how about if you are having symptoms that might suggest Lyme disease, but if there is no history of a tick bite and no bull’s-eye rash? Since many people with Lyme disease don’t recall getting bitten by a tick, and at least half don’t have the classic bull’s-eye rash, it can be a tough decision knowing whether or not you should receive treatment. I do know that the sooner you treat Lyme disease the better, and so if you think there is a good chance you have Lyme disease but aren’t 100% certain, in some cases it might be a good idea to receive treatment.
So for example, let’s say you are experiencing symptoms suggestive of Lyme disease but the testing comes out negative, you don’t have a bull’s-eye rash, and there is no evidence of a tick bite. If you’re experiencing a lot of neurological symptoms you might see a medical doctor who decides that the best approach is to see a neurologist, who in turn might run a bunch of tests (MRIs, nerve conduction studies, etc.). The problem with this approach is if you have Lyme disease then it probably will take a few weeks before you will see a specialist and have these tests done. This delay might not be an issue if you have chronic Lyme disease, but if you have acute Lyme disease this needs to be treated as soon as possible. It admittedly is a tough decision, as you don’t want to take antibiotics if you don’t have Lyme disease, but if you have acute Lyme disease you don’t want to go too long without treating it.
Lyme Disease vs. Multiple Sclerosis
Lyme disease is known as the “great imitator”, as it can mimic a lot of different health conditions. One of these is the autoimmune condition multiple sclerosis, and so let’s revisit the above situation where someone is having neurological symptoms and thinks it might be Lyme disease, but there also is a chance it can be something else, such as multiple sclerosis. In fact, a few studies have shown that Lyme neuroborreliosis can resemble multiple sclerosis (2) (3). And there is also the possibility that someone can have both Lyme disease and multiple sclerosis.
This is where seeing a competent healthcare practitioner becomes very important, but the truth is that sometimes it is very hard for even good doctors to diagnose someone with Lyme disease since the conventional tests are far from perfect, and you can’t always know by the symptoms. So at times it becomes a judgment call, and in this situation it’s arguably better to work with a doctor who is good at differential diagnosis rather than a doctor who relies on testing. Don’t get me wrong, as I think testing is important, and I definitely recommend tests to my patients. But when it comes to Lyme disease, too many doctors rely too much on testing, which as you now know, is far from perfect.
Other Testing Options For Lyme Disease
If both the ELISA and Western Blot come back negative there are other tests you can consider getting. One of the most well known labs used by Lyme disease specialists is IGeneX. One of the advantages of using IGeneX is that it tests for multiple strains of Borrelia burgdorferi. It’s a very expensive test, and so it makes sense to first do the ELISA and Western Blot and see if either of these comes out positive. If not then you might consider looking into a lab such as IGeneX.
Lyme Disease Is EVERYWHERE
You might think that you can’t possibly get Lyme disease because you live in an area where Lyme disease isn’t common. While some areas are riskier than others, the truth is that there is a risk of getting Lyme disease no matter where you live. And this isn’t just my opinion, as the research shows that Lyme disease is becoming more and more common in locations that in the past weren’t associated with this condition.
Plus, keep in mind that all it takes is A SINGLE exposure to get Lyme disease. So for example, you might live in an area where there seems to be minimal risk of getting bit by a tick, and in addition you don’t normally walk in the grass or do anything else that would put you at risk of getting Lyme disease. But all it takes is one hike in the woods, one barefoot walk in the grass, etc. Plus, if you have pets that go outside then of course they can also bring ticks into your home, thereby increasing the likelihood of you getting a tick bite.
Not Everyone Has “Classic” Lyme Disease Symptoms
I’m certainly not suggesting that most people reading this blog post, or even the majority have Lyme disease. However, there are some people who wouldn’t think they have Lyme disease because they don’t have the “typical” symptoms associated with this condition. For example, while many people with Lyme disease will experience fatigue, cognitive symptoms, and migrating muscle and joint pain, not everyone experiences these and other “classic” symptoms. In fact, some people with Lyme disease don’t experience any of the classic symptoms.
Below are some of the symptoms people with Lyme disease commonly experience. Keep in mind that the symptoms someone experiences may depend on whether they have acute or chronic Lyme disease. In addition, some people with Lyme disease won’t experience any of the following symptoms, as there are many other symptoms one can experience:
- Low grade fever
- Flu-like symptoms
- Neck stiffness
- Migrating muscle and joint pain
- Partial facial paralysis
- Cognitive problems/brain fog
- Sleep disturbances
- Heart complications (palpitations)
- Eye symptoms (blurry vision, eye pressure)
- Numbness and/or tingling
- Shooting pains
- Shortness of breath
- Weight gain or loss
- Bladder dysfunction
- Digestive issues
If You Have Already Been Diagnosed With Lyme Disease…
So far this blog post has focused on those people who aren’t yet aware that they have Lyme disease. But I’m sure there are some reading this who already have been diagnosed with this condition, along with one or more coinfections. The goal of this blog post was twofold. First, to make those who don’t think Lyme disease is a concern to realize that it might be. Even if you’re 100% certain you don’t have Lyme disease, you want to be aware of some of the things I mentioned, and at the same time take the proper precautions to make sure that you don’t ever suffer from this condition.
The second goal was to talk about the different treatment options that might benefit those people with Lyme disease. And while I’ll of course talk about antibiotics and herbal remedies, there are other treatments worth considering.
There actually is a third goal, and that is to encourage those who already have Lyme disease to share their experience in the comment sections below. While everyone is different, telling people what treatments did or didn’t work for you can be helpful for others with Lyme disease. And those reading this who currently have Lyme disease probably couldn’t imagine that they would be suffering from this condition prior to getting it, and so it would also be great to encourage those who don’t have Lyme disease to take the proper precautions so they don’t have to suffer from this condition.
Let’s Not Forget About Other Tick-Borne Coinfections
I’m not going to get into great detail about the coinfections that are commonly present along with Lyme disease, but here are some of the more common ones:
Although the focus of this blog post is on Lyme disease, the symptoms from these coinfections can be just as bad, and in some cases even worse. It’s also worth mentioning that some people with Lyme disease and related coinfections also have reactivated viral infections, such as Epstein-Barr and herpes simplex.
How Is Lyme Disease Related To Thyroid Health?
There is evidence that Borrelia burgdorferi can be a potential trigger of thyroid autoimmunity in those who are genetically susceptible (4) (5). Although more research is needed in this area, there apparently is a molecular mimicry mechanism between the proteins associated with Borrelia burgdorferi and thyroid cells. Molecular mimicry means that a foreign antigen (i.e. Borrelia burgdorferi) shares an amino acid sequence or structural similarities with self-antigens (i.e. thyroid tissue).
So in this situation it seems that there is similarity between some of the amino acids of Borrelia burgdorferi and the amino acids of the thyroid gland, which in turn causes the immune system to attack both Borrelia and the thyroid gland. There is also evidence that some of the coinfections associated with Lyme disease can trigger thyroid autoimmunity through similar mechanisms (6) (7). Although there is an increased risk of developing Graves’ disease or Hashimoto’s in someone who has Lyme disease or its associated coinfections, this of course doesn’t mean that most people with Lyme disease will develop an autoimmune condition. That being said, if you have Lyme disease then you not only want to do things aimed at eradicating the infection, but you also want to reduce inflammation and modulate the immune system.
Conventional Treatment Options For Acute and Chronic Lyme Disease
There are three stages of Lyme disease, and not surprisingly, the sooner you treat it the better the outcome. However, this doesn’t mean that those with early disseminated or chronic Lyme disease can’t receive good results. But in most cases, the earlier you begin treating it the quicker you are to heal. One problem is because Lyme disease is commonly misdiagnosed, many people don’t treat it until it becomes chronic. In addition, some people have dormant forms of Borrelia burgdorferi in their body, and because they don’t experience any symptoms they understandably don’t seek treatment.
Acute Lyme disease. Acute Lyme disease is treated conventionally through antibiotics. Doxycycline is commonly given for a period of 2 to 4 weeks, although some people instead take Amoxicillin or Cefuroxime. Although I’m not a big fan of antibiotics, this very well may be the best option for the acute stage, especially if you have obvious signs of Lyme disease (i.e. tick bite, bull’s-eye rash).
However, many people with Lyme disease never find a tick and don’t have a bull’s-eye rash. So if Lyme disease is suspected but there are no obvious signs, what approach should you take? It’s a tough decision, as while natural herbs might do the trick, if Lyme disease is strongly suspected one can make a good argument that antibiotics might be the best option. As I’ve said in numerous other blog posts, everything comes down to risks vs. benefits, and while there is a definite risk of taking antibiotics, there is also a big risk of not adequately treating acute Lyme disease.
Early disseminated Lyme disease. This is the second stage of Lyme disease, and it usually occurs within a few weeks of a tick bite. At this point the bacterial infection is widespread, and therefore is more challenging to treat. Just as is the case with stage #1, antibiotics are usually recommended in early disseminated Lyme disease. While oral antibiotics are common, in this stage intravenous antibiotics are also given to some people. While the standard course of treatment for stage #2 is 14 to 21 days of oral antibiotics, in many cases this isn’t enough to get the person well again.
Chronic Lyme disease. This is the third stage of Lyme disease, and is the most difficult to treat. Long-term antibiotics are commonly recommended for patients with chronic Lyme disease. And while some people respond, many people don’t. In fact, I’ve consulted with some Lyme disease patients who worked with Lyme disease specialists, and most of them have received long courses of antibiotics. This is even true with a few well known Lyme specialists who incorporate alternative methods. In other words, they combine alternative therapies with antibiotics.
Although I realize that antibiotics have their time and place, and I can understand people in stage one receiving antibiotics, and even those in stage two, I’m not a big fan of people with chronic Lyme disease taking very long courses of antibiotics (i.e. 6+ months). Sure, there might be some exceptions, and I realize that some patients actually feel better on long-term antibiotics. I’ve worked with patients who were on antibiotics for chronic Lyme disease for many months who didn’t feel great, but they felt even worse when not taking them.
It’s a tough situation, as we all know the negative effects that antibiotics have on the microbiome. That being said, if anyone reading this has been treated with antibiotics on a long-term basis for their chronic Lyme disease condition and felt like they benefited greatly please share your experience in the comments below. After all, my goal isn’t to criticize any type of treatment, and I also realize that some people with chronic Lyme disease do really well when taking a few months worth of antibiotics, and many can’t afford some of the other options I’ll discuss below. But there are some patients with chronic Lyme disease who have been receiving antibiotics for well over a year, and in some cases a few years.
So just to clarify, I don’t want you to get the impression that I’m opposed to people with chronic Lyme disease taking antibiotics. I definitely think that people with acute Lyme disease can benefit from taking antibiotics, and I also know there is a role of antibiotics in chronic Lyme disease. I realize that there are people with chronic Lyme disease who have benefited from 3 to 6 months of antibiotic therapy. But I’m just not sure what the benefit is of being on antibiotics for longer than this, although once again, I’m open to hearing what others have to say about this.
Can Herbs Eradicate Lyme Disease?
Many people reading this know that certain herbs have antimicrobial properties against infections. Herbs can eradicate early stages of Lyme disease, although the problem is that 1) not everyone responds to the same herbs and 2) you need to make sure the dosing is high enough, although not too high. My point is that herbs alone might be able to help someone with acute Lyme disease, but the same herbs that work for person #1 might not work for person #2. So even in acute Lyme disease a good approach might be a combination of antibiotics and herbs, although if anyone reading this has overcome Lyme disease without taking antibiotics please share your experience in the comments section below.
As for stages #2 and #3 of Lyme disease (especially stage #3), herbs in some cases might be the best treatment option for Lyme disease, but there is controversy over whether Borrelia burgdorferi can actually be eradicated in those with chronic Lyme disease. Some studies show that those “successfully” treated with chronic Lyme disease still have Borrelia burgdorferi in their body many years later (8) (9). On the other hand, other studies show that Borrelia burgdorferi do not persist after conventional treatment with antibiotics (10) (11).
What herbs can specifically help with Lyme disease? There are numerous protocols involving different herbs, and here are some of the most well known Lyme Disease protocols:
- The Zhang Protocol
- The Cowden Protocol
- Stephen Buhner Protocol
- Byron White formulas
Bio-Botanical Research also has some great herbs that can help with Lyme disease, and I’m sure there are numerous other protocols I didn’t list here. You can learn more about these by searching online, although one of the best books I have read on this topic was by herbalist Stephen Buhner entitled “Healing Lyme”, as he gives his “core protocol” for Lyme disease, and he also gives additional herbal recommendations based on whether someone has severe brain/CNS involvement, Bell’s palsy, seizures, anxiety, and many other symptoms and conditions. I consider this a must-read book for those with Lyme disease.
Other Treatment Options For Lyme Disease
Although herbs can be a very effective treatment method for many people, some people don’t receive good results with herbs alone. Some people with Lyme disease aren’t able to tolerate herbs, or they might only be able to tolerate doses too small to have a therapeutic effect. If you have tried herbs but haven’t had much success, or if you are unable to tolerate herbs, then you might want to look into some of the following alternative treatments:
Homeopathy. While you might have a hard time believing that homeopathy can benefit those with chronic Lyme disease, homeopathy can be amazingly effective for some people. While I couldn’t find any published studies demonstrating that homeopathy can help with acute or chronic Lyme disease, if you do some searching you’ll find some people who have done extremely well using homeopathy when conventional methods didn’t work.
Ozone therapy. Ozone therapy is a treatment that is designed to increase the amount of oxygen in the body. It can be administered in a few different ways, including intravenously and rectally through ozone suppositories. When done intravenously the blood is drawn from the patient, exposed to ozone, and then re-injected. It can help with resistant pathogens such as Borrelia burgdorferi, along with viruses.
Hyperbaric oxygen therapy. Hyperbaric oxygen therapy involves intermittently breathing pure oxygen in a pressurized room or tube, and thus it increases the amount of oxygen in your blood. It’s used to treat numerous medical conditions, and while it’s commonly used for wound healing, there is some research that shows that it can be an effective treatment for Lyme disease (12).
Peptide therapy. During the 2017 International Lyme and Associated Diseases Society (ILADS) conference, Dr. Kent Holtorf gave a presentation where he discussed the benefits of peptide therapy in Lyme disease. This is a bit complex to explain, and so I’ll include a link to his website that discusses this in greater detail.
Don’t Forget to Balance Other Compromised Areas of the Body
When trying to overcome any chronic infection, some people overlook the impact that other compromised areas of the body can have in restoring your health. For example, if you don’t have healthy adrenals you can’t have a healthy immune system. And while taking adrenal support might be beneficial, lifestyle factors such as eating well, getting sufficient sleep, and doing a good job of handling stress are all essential. Supporting mitochondria can be important, especially if someone is taking an antibiotic such as doxycycline, as the research shows that these drugs impair mitochondrial function (13) (14). Decreasing your toxic load also can make a big difference in your recovery.
Let’s not forget about the importance of thyroid hormone, which affects every cell in the body. If someone has Lyme disease it is important that they have healthy levels of thyroid hormone. Too much thyroid hormone isn’t a good thing (for those with hyperthyroidism and Graves’ disease), but if you want to heal from Lyme disease you also don’t want to have low or depressed thyroid hormone levels.
What’s Your Experience With Lyme Disease?
For those reading this who have already been diagnosed with Lyme disease, please share your experience in the comments section below. Feel free to share what treatment options worked and didn’t work for you. The goal here is to help others who are suffering from Lyme disease, and so if you have received excellent results through antibiotics, herbs, homeopathy, ozone therapy, etc., then please let others know about this. And if you haven’t received good results and are still suffering from the symptoms associated with Lyme disease and its coinfections, I still encourage you to share your experience with others. If you haven’t been diagnosed with Lyme disease then perhaps you can share the experience of a family member or friend who dealt with this.