So you think you have Lyme disease

A beginner’s guide to understanding what that means and what you should do next


Ever since I wrote my first post about Lyme disease, I’ve been contacted by various readers who have struggled with chronic, unexplained illness. They frequently ask for information about Lyme disease so they can determine whether or not this may be the source of their ailment. I’ve written these emails enough times that I’m sharing this information publicly in the hopes it will benefit those who are too shy or otherwise uncomfortable with reaching out to me directly.

Note: I am not a doctor. Nothing in this post should be construed as medical advice. This is purely for informational purposes and not intended to diagnose, treat, or cure any condition. Always consult your personal doctor before starting any form of treatment.

1. Allow for the possibility

If you’ve had negative Lyme antibody tests before, you cannot rule out Lyme disease as the cause. That’s because, as the name implies, the test relies on detecting antibodies to determine the presence of Lyme. Unfortunately, Lyme is different than many types of infections, and so this test is not always accurate. For instance, it may take six weeks after infection for antibodies to show up in such a test (according to the CDC).

Lyme disease bacteria are capable of antigenic variation, meaning that they are able to change how they look to the immune system in order to avoid detection. Once Lyme gets deep into your body, the body stops being able to detect it and so antibodies are not produced. That means any tests looking for antibodies will return a false negative at that point in time.

Antibody tests include enzyme-linked immunoassay (ELISA) and Western Blot tests. These are the ones you’re most likely to get if you to your primary care doctor and get tested.

If you’ve had negative antibody tests, then you can’t rationally rule out Lyme disease, especially if you’ve been sick for years. It also doesn’t matter if you remember being bitten or having the tell-tale bullseye rash. I had two negative Lyme antibody tests and have no memory of ever having a single tick bite or a bullseye rash, and yet I still have Lyme disease.

2. Self-assessment

Before you do too much research about Lyme disease, make sure your symptoms line up. The best self-assessment I’ve found is from Why can’t I get better? by Dr. Richard Horowitz. Dr. Horowitz is a doctor specializing in the treatment of Lyme disease, and he developed this assessment as a diagnostic tool for doctors. It’s equally useful for you to determine for yourself whether it’s worth your time and energy to investigate Lyme disease further.

You can download the assessment questionnaire here: http://www.bottomlinepublications.com/downloads/Horowitz_MISIDSLymeQuestionnaire.pdf

The last page of the questionnaire contains the scoring information and how you can determine whether Lyme disease is a possibility for you.

3. Research Topics

Assuming the self-assessment indicated that Lyme disease is a possibility for you, the next thing to do is to do some research on your own. The unfortunate truth about Lyme disease is that you will be battling not just the disease, but the perception of the disease in the medical community. Both points can be overwhelming if you don’t take the time to do some research on your own.

Disease Process

The best way to wrap your head around why you feel certain symptoms and why some standard treatments and testing don’t work is to get a good understanding of how Lyme disease works.

Lyme disease is caused by a bacteria from the genus Borrelia. There are many different Borrelia bacteria that are capable of causing Lyme disease, and they are often thought to be geographically bound based on the ticks that are carriers. As such, you’ll read different Borrelia bacteria are responsible for Lyme disease in different parts of the world (source: Wikipedia). Regardless of the specific type of Borrelia infection, the disease progresses in the same way.

Recommendation: The best book I’ve read on the disease process is Healing Lyme by Stephen Harrod Buhner. Buhner is not a medical doctor, but rather an herbalist who devised an herbal treatment plan for Lyme that is used worldwide as an alternative or an addition to antibiotic treatment.

The first half of the book is about the disease process, how the tick picks up the bacteria, and how it gets introduced into a human body. After that, Buhner describes how the bacteria take root in the body, causing certain symptoms and evading detection. In my mind, this is must-read material for anyone fighting Lyme disease.

The second half of the book contains his protocol for fighting Lyme disease with herbs. If you aren’t interested in herbs, then you can feel free to skip this part of the book. If you are even a little bit curious, then it’s definitely worth a read. Buhner does a great job describing exactly how the various herbs interrupt the disease process.

Coinfections

The part of the puzzle that is often most difficult for people to grasp is that having Lyme disease typically means you are infected not just with Borrelia, but also with one or more additional bacteria, viruses, or parasites. That’s because the same ticks that carry Borrelia also carry these other diseases. Indeed, a large part of the diagnostic problem is determining which symptoms relate to which infections.

Adding to the trouble, once Lyme gets deep in your body and has negatively affected the immune system, this makes you more susceptible to other diseases. So even if the initial transmission of Borrelia wasn’t accompanied by something else, you can just as easily pick up another infection that your body isn’t capable of fighting off on its own. A healthy immune system encounters and fights off viruses and bacteria quite frequently, without ever causing symptoms; an unhealthy immune system, as is the case with Lyme disease, is left unable to defend itself against what would otherwise be everyday attacks.

There are a large number of coinfections that are possible to have along with Lyme disease. Some of the common ones include:

In my case, I have both Bartonella and Babesia infections on top of Lyme disease.

Recommendations: Once again, Healing Lyme by Stephen Harrod Buhner is an excellent resource. It covers several of the common coinfections and briefly explains their different behaviors and symptoms. Buhner’s followup book, Healing Lyme Disease Coinfections focuses specifically on Bartonella and mycoplasma, with a deep investigation into each as well as herbal protocols for treatment. Why can’t I get better? by Dr. Horowitz, the book from which the symptom survey I mentioned above is published, is also a good source of information on coinfections (note: Horowitz’s book contains a lot of information and can be overwhelming, which is why I recommend reading Buhner’s books first).

Biochemistry and Imbalances

The part that took me the longest to understand is how Lyme disease affects your body’s biochemistry. The longer Lyme disease is present in the body, the more out of balance your internal ecosystem becomes. It may become difficult to identify symptoms caused by infection vs. symptoms caused by an imbalance in the body.

For example, many Lyme disease patients have a lot of trouble sleeping. This can take the form of insomnia, unrestful sleep, and many other types of sleep disturbance. Sleep deprivation can cause a number of symptoms on its own, so where do the Lyme symptoms start and the sleep deprivation symptoms stop?

When you add in the effect of coinfections on the body, it’s likely that there are any number of imbalances that make you feel worse than you would otherwise. This happens because the infections scavenge nutrients and hormones from your body into to stay alive. Naturally, that means less for your body. Your body, constantly trying to get back into balance, starts trying to piece together vital needs by taking from other parts, which creates a further imbalance.

Some of the imbalances I currently have include:

It’s important to understand that this part of the disease process, and also why simply treating the infections won’t necessarily result in feeling better quickly. Especially in chronic cases, it will take a while for all of the imbalances in the body to resolve.

Recommendations: The two previously-mentioned Buhner books have a lot of good information in them about the biochemistry problems that Lyme and the related coinfections cause. Horowitz’s book digs even further as he explains case studies of patients he has seen and the various secondary issues they’ve had.

4.Other Things You Should Know


Medical Controversy

Unfortunately, if you have Lyme disease, you are going to be affected by an ongoing controversy in the medical profession surrounding the disease. Let me start by saying that, if you have Lyme disease, your priority should be getting better and I strongly recommend you avoid getting too involved with the controversy directly. You are likely to find doctors on both sides of the argument — just find a doctor you can trust and don’t worry too much about the larger struggle. That said, here’s the minimum you need to know about the controversy.

First, no one denies the existence of Lyme disease, the bacteria that causes it, or that treatment for acute Lyme disease (within weeks of infection) is a relatively straightforward process. The controversy has to do with what is called “chronic Lyme disease.”

The Centers for Disease Control (CDC) more or less says that chronic Lyme disease doesn’t exist. There may be cases of Lyme disease that are caught in later stages, however, the standard treatment of up to a month on antibiotics (usually doxycycline) is proven to irradicate the infection. After that, any Lyme-related symptoms should resolve. If they don’t, then you are deemed to have “post-treatment Lyme disease syndrome,” for which there is no real treatment or cure and the cause of which is still unknown.

An opposition group, International Lyme and Associated Diseases Society (ILADS), challenges the conventional thinking around Lyme disease. They question the accuracy and outcomes of a lot of Lyme disease research and generally believe that a month of antibiotics is not enough to cure Lyme disease once it has moved beyond the acute stage. They reject the idea of post-treatment Lyme disease syndrome and instead believe that a continuation of symptoms indicates ongoing infection. Quite simply, if you still feel sick, then you still have Lyme disease, regardless of what antibody tests tell you. That necessarily means a longer course of treatment.

This leaves patients precariously in the middle of two medical opinions. Any doctor you seek out will subscribe to one of these two theories of Lyme disease, and that will unquestionably affect the treatment you receive and the outcome. ILADS doctors, for instance, tend to prescribe long-term antibiotics as treatment for Lyme disease while non-ILADS doctors will go with the standard treatment length recommended by the CDC.

Doctors who don’t subscribe to the conventional thinking around Lyme disease are called Lyme-literate doctors (or LLMDs for short). Not all LLMDs are part of ILADS, and there’s no certification for LLMDs. Further complicating matters, many doctors don’t like advertising themselves as LLMDs due to the Lyme controversy. There are a number of articles labeling all LLMDs as quacks, and while I’m sure there are some who take advantage of the sick, I’m equally sure there are caring, compassionate, rational LLMDs who just honestly want to help people.

Recommendation: Try to stay away from the controversy as much as possible. Ultimately, any dogmatic belief system is not as important as you getting better. Find a doctor you trust, and if you don’t like the results, go to another doctor. Many Lyme disease patients end up seeing several doctors before they find one that they both want to work with and who can help them heal. The best places to start your search are with other Lyme disease patients in your area. Seek out a Lyme disease support group or message board to get personal recommendations. Do research before making an appointment with any doctor and be sure to check your state or local medical board to ensure there have been no complaints filed.

Jarisch-Herxheimer Reactions

For many, the most difficult part of Lyme disease recovery is struggling through Jarisch-Herxheimer reactions (often shortened to Herxheimer reactions or just “a herx”). Herxing is the reaction of your body to an increase in toxin load. You’ve probably experienced something similar to this in your lifetime on days when you describe yourself as feeling “run down.”

Though the exact symptoms of a herx can vary from person to person, they frequently include flu-like symptoms such as body aches, chills, and nausea. This is the result of your body fighting to rid itself of the extra toxin load but being unable to do so at a fast enough rate.

Herxes occur during Lyme disease treatment as the result of bacteria dying. Some (not all) bacteria release endotoxins into your system upon dying — a final horrible gift to you on the way out. If bacteria are being killed at a sufficiently fast enough rate, your body may not be able to keep up with toxic load and so you end up feeling sick.

As a result, any comprehensive treatment plan involves some kind of herx management. You definitely want the bacteria to die, but you need to do it in such a way that it doesn’t make you feel incredibly sick. Herxing for too long is dangerous as it puts your body under a lot of stress so care must be taken to manage herxes while still making progress on your treatment.

Adding to the complexity of this situation is your body’s innate ability to detoxify. Some people are born with a genetic mutation to the MTHFR gene that adversely affects their ability to detoxify. The MTHFR gene contains instructions for creating enzymes that are important for processing B vitamins. The B vitamins, in turn, are an important aspect of the detoxification process. If you’re starting treatment for Lyme disease, it’s a good idea to know if your MTHFR gene has any mutations that could negative affect your ability to detoxify. Treatment for this defect is very simple: you just need to take the active form of each B-vitamin as a supplement.

Recommendation: Be sure your treatment plan involves a plan for managing detoxification and herxes. They will certainly occur, but it’s how you react to them that will determine your overall comfort level during the treatment. My doctor told me at the start, “you’re going to feel worse before you feel better.” It’s a lousy thing to go through, but if managed correctly, you can deal with it.

Treatment Cost

This is really where things get ugly. Most LLMDs do not accept insurance, which means you’ll be paying out-of-pocket for each visit and, frequently, for tests. If you have a PPO insurance plan, you will be able to submit claims at an out-of-network rate; check with your insurance plan for details.

It’s not uncommon for an initial consultation with a LLMD in the United States to cost around $2000 for the visit and testing. Mine came to about $1600, which covered a two-hour consultation (~$600) and a bunch of tests. If you’re used to having a U.S. health insurance company paying for your doctor visits, this amount may seem exorbitant because you never end up seeing how much most doctors charge for their services. My last 15-minute visit with my primary care doctor cost $200 (I paid only $30 out-of-pocket). Taken in that light, the cost of my initial visit with my LLMD seems much more reasonable.

If you are prescribed antibiotics (or other conventional treatments), then your insurance should kick in for those…at least initially. Insurance companies generally don’t like to cover long-term antibiotics, so it may be a struggle after a certain point to get it covered. The end result is that you can end up paying for antibiotics out-of-pocket if the treatment continues over a long period of time.

So why don’t most LLMDs take insurance, and why won’t insurance cover long-term antibiotic treatment? Since the treatments and diagnostic tests LLMDs use are non-conventional, they would end up needing to battle with insurance companies frequently (Dr. Horowitz describes this in his book). Doing so would involve more time and more cost to the doctor, which would then result in more cost to the patient as well as being able to see fewer patients.

Likewise, health insurance companies in the U.S. typically only cover conventional Lyme disease treatments. That makes sense, since the cost of a month of antibiotics is a lot more reasonable than several years of antibiotics. The difference in treatment cost is, naturally, a very big part of the overall controversy.

Unfortunately, any way you look at the situation, Lyme patients end up paying a lot more out-of-pocket for their treatment than patients with more “conventional” problems. This is extremely unfortunate and unfair, but a hard fact of the treatment.

Adding to the cost will be additional vitamins, hormones, and other supplements you’ll need to address the biochemistry issues and herxing. These you’ll frequently be able to pick up either at a local health store or online.

Recommendation: Put some money aside each month for health-related expenses. Depending on your course of treatment, it could be hundreds or even thousands of dollars. There’s really no better way to spend money than on your health, and even though the total amount is depressingly high, it will be money well spent once you’re feeling healthy.

Treatment Options

There are a lot of different treatment options for Lyme, but they all boil down to three main parts:

  1. Killing the bacteria (and viruses, and parasites)
  2. Correcting any body chemistry issues
  3. Aiding detoxification and managing herxes

You can accomplish killing the bacteria in a couple of different ways. The first way is, obviously, to take conventional antibiotics. Doctors will disagree as to whether oral or IV antibiotics are appropriate based on your symptoms and their severity. If you go this route, you’ll likely need several different antibiotics at the same time, and you may even need to rotate to a different set of antibiotics later.

Another route to kill the bacteria is to take herbs. There are several herbal protocols for treating Lyme disease. The ones you’ll see mentioned most are:

  • Buhner protocol — this comes directly from the books by Buhner I mentioned earlier. This is the protocol I am following.
  • Cowden protocol — the creation of Dr. Lee Cowden, this protocol features a different set of herbs than Buhner’s and includes supplements to aid in detoxification and imbalances.
  • Zhang protocol — Dr. Zhang creates custom herbal remedies based on the principles of traditional Chinese medicine for patients based on their symptoms.

Each of these protocols has both proponents and opponents, and it’s hard to compare one to another because they take slightly different approaches to treating Lyme disease. The best advice I’ve read is from Buhner, who recommends that any protocol only be used as a starting point, and that patients should experiment to find what works best for them.

Recommendation: The decision of using antibiotics or herbs, or a combination (as many patients do), is a discussion that you should have with your doctor. Make sure to do research before you’re sitting in the doctor’s office.

Any complete treatment program should also include treating the body imbalances and managing herxes. As with killing the bacteria, this can be done in any number of ways and needs to be based on what’s going on in your body. Not everyone will have the same reactions or imbalances, so these need to be tailored to the individual.

Conclusion

Facing the prospect of having chronic Lyme disease is a daunting one. For those who have been sick for a long time, becoming a part of the Lyme disease community can be quite overwhelming. There’s a lot to understand in order to choose the right path forward for yourself. The good news is that people do get better, and your best weapon in the battle against Lyme disease is to be as educated about it and your treatment options as possible. I hope this post helps.

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Written by Nicholas C. Zakas

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