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What is the Case with Post-Treatment Lyme Disease Syndrome?

Maybe you have heard of this or maybe not. Maybe you deal with fatigue on a daily basis or you have achy joints. I know many of you are tired and mostly likely tired of being tired. You wake up from a full night’s sleep and feel like you can sleep another 8 hours. You drain the pots of coffee hoping for relief but find little. You probably have been to multiple doctors with little results. They may say it is stress or they will say it is all in your head. Maybe they will chalk it up to genetics and say there is nothing you can do about it. I have heard many of these stories. Truth is some things need a deeper investigation from a broader viewpoint and Lyme disease is one that should be on your radar.

One of the causes to so many of our problems today is Lyme disease. You may have already seen our other posts on this topic. However, there is one I want to focus on today and that is post-treatment Lyme disease syndrome. It is a controversial topic. Lyme is a controversial topic in of itself. Many will say it doesn’t exist in our area, Arkansas. The CDC shows the main areas are the upper Midwest and New England, however the map also shows isolated areas throughout the United States. Furthermore, they are finding different species of Borrelia and our tests need to compensate for it. Some have moved from using only the Western Blot to a newer a test called the Immunoblot. IGeneX offers several panels that include both tests and others to test for co-infections.

Co-infections are quite common with Borrelia and they need to be treated as well. However, treatment is part of the main topic today. Usually Lyme is treated with a strong course of antibiotics. Unfortunately, this often doesn’t eradicate the bacteria. It can suppress and evade the immune system through a variety of methods. (1) This is one of the significant reasons behind post-treatment lyme disease syndrome (PTLDS).

PTLDS is also known as chronic Lyme disease. The CDC has stated the cause of PTLDS is unknown however, the studies are showing that Borrelia can evade and suppress the immune system as well as protect itself against antibiotics. This is why so many call it chronic Lyme disease. The bacteria is still around. Another factor in all of this is the failure of our testing regimen to pick up the infection. The first test we recommend, the ELISA test, has a false negative rate of 52%! Many people are never diagnosed because of this regimen. Chronic Lyme disease becomes a more fitting term for those who are suffering because the group is made up of those never diagnosed properly and those who received a failed treatment.

The study I cited above found that a few of the test subjects did not test for Lyme, but upon further investigation it was found in the organs. This has led some researchers and clinicians to develop questionnaires to help their clients. A few factors come into play.

  • Do you live in an area populated with ticks?
  • What is the likelihood of you being bitten?
  • Do you remember having a tick bite?
  • If so, did you develop a rash?
  • Do you have any of the following symptoms? (fatigue, joint pain, muscle pain, sleep issues, brain fog, headaches, depression, neck pain, fever)

These questionnaires include more questions but you get the idea. Furthermore, do not think you have to have all the symptoms. That is not the case at all. You may only have one of them! The bull’s eye rash that is so commonly associated with it is relatively rare. Lyme is also known as the great mimicker. It looks like a lot of other diseases making it slide under the radar.

So How Prevalent is Chronic Lyme Disease?

At least from the standpoint of post-treatment, 36% continue to have symptoms. (2) Another study has found treatments for early Lyme disease to fail between 16% to 39% of the time. And for patients suffering with chronic Lyme it is between 26% to 50% failure. (3) The CDC states there are about 30,000 cases of Lyme each year. So take the percentages above, the amount cases each year, and the number of undiagnosed cases and you have a disease that is affecting many, many people. One doctor, Dr. Nicola McFadzean Ducharme, has stated that it may be the fastest growing infection in the US.

And this is not a little bit of fatigue or other symptoms when we talk about many of the Lyme patients. Often times it is debilitating. 72% of chronic Lyme patients suffer from a worse quality of life when compared to other chronic diseases! (4) That is ahead of those suffering from heart failure, diabetes, and multiple sclerosis!

So What Can Be Done?

I always recommend finding a holistic doctor who specializes in a natural approach. There is a lot of truth in what Hippocrates said long ago, “Healing is a matter of time, but it is sometimes a matter of opportunity.” Treatment takes time for sure, but it also is a matter of opportunity. The opportunity to find the right treatment for you and the opportunity for your body to heal. We can get in the way of both of those things.

Often times it is hard to find the right treatment because of the lack of exposure to doctors who approach the disease in the right way. Due to biochemical individuality, each patient must be treated individually not in relation to others. Of course some things correlate between patients, we are humans, but due to our differing environments we may need different treatments. Even those who live in the same home have a different genetic makeup, gut flora, and bodies. We eat different things and are exposed to different things. So what helps one patient may not help the next. I hope that makes sense. It is a crucial point.

Here is an example, I suffered from migraines. After navigating many avenues, I found out that I was sensitive to gluten. I removed gluten from my diet and the migraines ceased. Now if I would go and shout from the rooftops that gluten causes migraines, it would fail miserably. I have treated many patients with migraines and found that they have different causes. One was casein, another is soy and estrogen, and yet another is corn. Everyone is different. So the same goes with Lyme support which I have also gone through. Here is a little snippet of my story.

I never ran a blood test on myself, but I had many of the symptoms. I had struggled with fatigue and headaches for many years in addition to migraines. I also grew up in southwest Missouri, so I was exposed to many ticks. I grew up on 30 acres with lots of tick bites. So according to the questionnaires I had a high likelihood of having Lyme. After some testing sure enough I did and some of the other co-infections. After some support with several different herbs including neem leaf and an essential oil blend, I have more energy than I have had in a long time! However, my support regimen was quite different from other clients. Again, the variation.

Many who see us already have a Lyme diagnosis, if not we can run the necessary labs to confirm our suspicions. Our suspicions usually come from a long list of symptoms a client presents with and because we live in the Ozarks Lyme stays on our radar. So if someone comes in with those symptoms, we are thinking of Lyme as one of our differential diagnoses. This is confirmed through blood tests and muscle testing too. We are thorough investigators.

Once it has been pinpointed we search for herbs that have been tested to provide excellent support to client’s with Lyme. Many of these herbs have great antimicrobial properties, some specifically against spirochetes like Borrelia. They also may help the body against co-infections. We do test for co-infections in our office too. We cannot forget about those. Some of the herbs we use are neem leaf, houttuynia, and noni fruit. These are just meant as examples not actually advice for treatment.

Along with focusing on the infection and helping the body heal we have to look at other toxins that are affecting the body. Diseases are multifactorial. Lyme disease may be caused by a Borrelia but the healing process can be hindered by other toxins, infections, and food sensitivities. So we check for those too. We also require an anti-inflammatory diet consisting of whole foods to help nourish the body. Just as Hippocrates said, “Let food be thy medicine, and medicine be thy food,” we follow suit. It was true in his day and it is true today.

The treatment process can take several months but we work with each of our clients each step of the way to ensure they are well looked after. We don’t want to leave one stone unturned and we don’t want to leave anyone hanging.

Well, if you haven’t checked it out go check out our other articles on Lyme. There is some additional information there. Otherwise, you can always come talk to us. We love talking about this stuff. We have a free 15 min consultation. I hope this helps!

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