By Dr. Kyle Warren
Edited by Meghan Feir Walker

In 2022, the Centers for Disease Control and Prevention (CDC) made some notable updates to their website addressing the reality of chronic Lyme disease, aka “post-treatment Lyme disease syndrome.”

In this article, we’ll go through each of the CDC’s published updates and stances, along with how this may affect chronic Lyme sufferers and other Lyme practitioners. To watch the accompanying video, click here.

CDC acknowledges chronic Lyme disease 

After 40 years of ignoring chronic Lyme disease sufferers and their experiences, the CDC has added a section to their website’s Lyme disease pages addressing chronic Lyme disease or “post-treatment Lyme disease syndrome,” as they call it.

CDC Acknowledges Chronic Lyme Disease
CDC Acknowledges Chronic Lyme Disease

When you go to this area (seen above) of the CDC’s website, you can see there is now a section added about post-treatment Lyme disease syndrome.

Seeing this step in the right direction made me happy and hopeful. For decades, those suffering with Lyme disease and its co-infections haven’t been taken seriously. Now they’ll slowly start getting more recognized by medical practitioners. 

CDC Acknowledges Chronic Lyme Disease

When you click on the treatment section, they acknowledge that some patients report persistent symptoms of pain, fatigue, and difficulty thinking, even after treatment for Lyme disease. There are, of course, many other difficult symptoms that aren’t mentioned, but this is a start. 

CDC Acknowledges Chronic Lyme Disease. Now your doctor should too.

When doctors are wrong

Many patients who have these and many other types of lingering symptoms have not been acknowledged. They’ve been demeaned by the medical system, and have often been accused of making up symptoms that don’t exist. 

When my family first encountered Lyme, our doctor said they didn’t believe in Lyme. Therefore, it wasn’t a cause for concern. It was a demeaning experience when the doctor wrote us off and said it must be in our heads. My patients have told extremely similar stories. They’ve experienced the same demeaning, patronizing, uneducated responses from many in the medical community. 

After caring for thousands of my patients who have had to fight against this miserable disease, previously alone, and having firsthand experience with it in my family, it’s incredibly gratifying to have the CDC finally acknowledge its existence.

Doctors need to approach difficult cases with compassion and humility. They need to apologize for failing to find a reason, instead of insinuating the patient is making it up because their labs are normal (because they’re testing the wrong things). 

If your doctor is telling you that Lyme disease doesn’t cause chronic problems or that you only have to address it if you developed a bullseye rash, they’re wrong. If they tell you it doesn’t cause nerve symptoms, heart problems, arthritis, and long-term problems for some people, they’re wrong. Now the CDC even extends some acknowledgment to thousands of peoples’ suffering. 

Why the Lyme community is still upset.

Why this is exciting, but people are still angry

By admitting to the reality of chronic Lyme, this could open the door for some exciting developments. Having this CDC page on chronic Lyme published could lead to wider-read and better-funded research, for guidelines to be rewritten, for doctors to start taking chronic Lyme patients seriously, for patients to receive better and immediate care, and even for insurance companies to eventually start covering treatments for this illness. 

But there are still two sides to this coin. On one hand, it’s exciting to see the CDC is finally acknowledging that Lyme disease can become a chronic problem. This could lead to great changes, as I mentioned. But on the other hand, there are still inaccurate statements on their website that will still infuriate chronic Lyme sufferers. 

While the CDC now acknowledges chronic Lyme disease, they're still enraging the Lyme community.

Some of the misinformation continues

While this update to their website and stance on the chronic Lyme subject is a great step in the right direction, there is still some information that needs correcting.

A few of the problematic statements published on their website include the following:

  • “Why some patients experience PTLDS (post-treatment Lyme disease syndrome) is not known.”
  • “Unfortunately, there is no proven treatment for PTLDS.”
  • “Patients with PTLDS usually get better over time, but it can take many months to feel completely well.” 

Once again, acknowledging that chronic Lyme or post-treatment Lyme exists is a huge deal for the Lyme community. Unfortunately, the CDC is basically saying “We don’t know what causes it, and we don’t know there’s a proven treatment.” 

The last paragraph is especially upsetting when it says, “Patients with post-treatment Lyme disease syndrome usually get better over time. It can take many months to feel completely well.” 

In other words, they’re saying this goes away, if you just wait for a few months. That was not true for my family, nor has it been the case for the vast majority of patients we speak with and encounter. This disease, its symptoms, and its major effects on a person’s body do not just disappear in a number of months. 

So, while the Lyme community and their Lyme doctors are excited for this acknowledgement that’s been 40 years in the making, there are still harmful statements being made that can lead to ineffective treatment and patient care.

The CDC is still behind in treatment guidelines.

The CDC’s recommended approach makes me sad/angry

The CDC’s listed approach toward post-treatment Lyme disease is to have patients take antibiotics for two to four weeks and then take other medications to manage symptoms. So, if you have pain, take something for pain. If you have anxiety, get an antidepressant or anti-anxiety medication. If you have neuropathy, take nerve blockers. 

Their approach of using medications to slightly manage symptoms only masks the root cause of the problems. This is how standard medicine approaches far too many illnesses.

Columbia University, Johns Hopkins, Harvard, ILADS, and a myriad of other healthcare practitioners have been working on multifaceted approaches that could help heal people from Lyme. 

For over a decade, Restorative Health Solutions has been helping people suffering from this brutal disease heal. There is so much that can be done to help patients heal that’s just not being stated.

At our clinic, we take a three-fold approach. We help patients’ immune and detoxification systems, kill the bugs, and repair the body. In other videos and articles, we focus on how we try to help people heal. That’s what the discussion really needs to focus on now across the globe. 

This is one step for progress.

One step for progress

Although these statements from the CDC still have a long way to go in their accuracy, their acknowledgement of chronic Lyme will be an instigator of some change. Since most standard medicine practitioners stand by CDC regulations closely, if your doctor tells you they don’t believe in Lyme, you now have the power to point to the CDC website and show them they’re wrong. 

The argument of its existence can be over, which will hopefully result in more press being given to Lyme disease, more research being funded, and fewer patients’ problems going unresolved. But the statements included on their website are still extremely disappointing because we do know root causes and there are ways to help patients heal without just masking symptoms with medications.

This development will hopefully save time and heartache for patients and their families plagued by this devastating disease. All members of the medical community need to rally around their patients, not argue about whether their symptoms are real or imagined. Having this acknowledgement is exciting and necessary progress in our fight against Lyme disease and its co-infections. 

I hope you found this article helpful. We wish you the best on your journey toward health.

Watch the video

To view a video on this very topic, click here to hear from Dr. Warren.

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