Bad testing, not retesting, and more
It’s Lyme Disease Awareness Month, and I want to highlight common Lyme program mistakes that needlessly continue happening
In our last article, we highlighted a real patient’s story that included her years of frustration before coming to us and her eventual freedom from Lyme’s effects on her life.
We will highlight three more patients’ journeys in this article that demonstrate why testing and retesting patients with more reliable testing methods is imperative to their success and recovery.
The biggest Lyme program mistakes: Bad testing and not retesting
At the clinic, we have some patients who don’t realize that Lyme and/or co-infections are the cause of their symptoms. But most often, I’m not the first doctor in a Lyme patient’s lineup.
When people are feeling poorly, they understandably tend to go to their primary doctor. They may get sent to rheumatology or neurology after that.
After they’ve seen several specialists, most of whom don’t know what’s really going on, some patients may get sent to the Mayo Clinic or the University of Minnesota. Unfortunately, both the Mayo Clinic and the U of M still use outdated, conventional approaches when it comes to Lyme disease and tickborne illnesses.
The standard approach of administering a quick round of antibiotics and thinking that will magically cure patients of Lyme disease at any stage is foolish.
While a short round of antibiotics may be quite effective in the very beginning stage of contracting Lyme disease (not 10 percent of the time, however), once a person has had it for longer than two to three months, it has progressed into a much more difficult problem because the bacteria has entered into new stages that are much more difficult to eradicate.
The standard approach isn’t working
I often see patients who have had Lyme disease and other tickborne illnesses for years, a decade, and even longer. The common approach of simply taking an antibiotic isn’t a viable solution for the vast majority of people.
This is why, more often than not, I am looking at multiple doctor records when a patient comes in and they have chronic/post-treatment Lyme disease. Many of our patients have already tried various Lyme programs before coming to us, yet they’re still suffering. So when they come to us, we know retesting is crucial.
For those who have tried Lyme and tickborne illness programs before, besides incorporating a much more effective protocol, thorough testing and retesting are crucial because we need to know if the previous and current programs are doing anything (i.e., made bacteria levels lower, eradicated an infection, etc.). If programs aren’t being effective, we need to understand why.
Patients need doctors to help them navigate the ups and downs. When they aren’t getting the attention and strategy they feel alone, miserable, and confused. Then, they often give up, feeling like they’re a hopeless case.
It’s a doctor’s job to figure out what worked, what didn’t, and why. This is the only way a patient can get over Lyme disease and co-infections and recover.
The three-tack analogy
In many cases, past programs may have done some good, but there’s a roadblock preventing more progress. In other cases, the patient is making progress, but they can’t tell because they still have so many symptoms.
To illustrate this problem, let’s talk about the three-tack problem.
If you have three tacks stuck in your foot…
- I can’t take one out and expect you to feel 33% better.
- I can’t expect it to feel better right away if we take all three tacks out because it will still hurt, bleed, and need the proper ointment in order for the infection to stop spreading and to heal correctly and as quickly as possible.
This is an illustration of how hard it can be to track progress. Patients can become so discouraged because they don’t understand that it’s not a one-tack problem; it was three tacks lodged in the foot. Not only do you have to pull the tacks out, but you also have to heal after the tacks are out.
The four-stage approach we take
When you’re dealing with chronic or post-treatment Lyme and/or co-infections, we want to go through these four stages.
- Orange arrow: Attack biofilm and infections
We have to attack biofilms and kill the Lyme and co-infection bacteria/parasites.
- Blue arrow: Support the immune system
We must assess how we can help your immune system finish the battle.
- Green arrow: Rebuilding the body with raw materials
We need to make sure you have plenty of the raw materials (vitamins, minerals, nutrients, healthy hormones) that help your body function and recover. The disease can easily deplete the body of these essentials, so it’s imperative your body is replenished.
- Yellow arrow: Rebuilding the body by exercising
Since infections and diseases cause such a burden on the body, patients are often forced into a life of inactivity. This causes the body to become weak and out of shape. In this stage, you need to start exercising both physically and neurologically to make your body and mind stronger again.
This is the approach we take. You’ll see under each arrow a breakdown of certain things that can happen. When a Lyme patient comes into the office, I’m going to assess if we figured out what was wrong, and if they were on a protocol, what went right and wrong with it.
The healing journey may have some bumps along the way, but it’s entirely possible to heal. However, doctors need to be able to problem-solve better.
When you’ve tried something for a while, you need to retest to see how the protocol is performing. If nothing is happening, your doctor needs to reassess what may be causing roadblocks.
I’ll go through a few patient examples of how important it was to figure out what was stalling their progress in their individual cases.
Patient example No. 1: Immune system nutrient deficiencies
One of the patients we’ve been working with still had Lyme, although they had previously been through another protocol.
Through multiple tests, we realized why the protocol failed and why they weren’t lowering bacteria levels. It was due to their lacking simple immune nutrients.
We know from past Columbia research that whether you’re taking antibiotics, herbal antibiotics or both, the killing approach doesn’t finish the killing process entirely. You need your immune system to finish the job.
It’s like a relay race; you first take certain things to dissolve the biofilm, then you kill the bacteria as much as you can with killing protocols, and then it’s the immune system’s turn to finish the race and defeat the infections.
But if you’re missing simple nutrients like vitamin A, vitamin C, or some other nutrient that’s necessary for your immune system, then you can’t finish the job.
Even if those first steps work, you still need to aid the body in its recovery process.
This person had immense joint pain, so after the Lyme had been defeated, we had to help the joints heal from the damage that had been done to them.
If you’re experiencing the same situation, you may need things like collagen and manganese, and you might need to exercise all the muscles around the joints again, so all the joints can begin to function normally again.
Patient example No. 2: Biofilm protecting Lyme
In this patient’s case, they, too, still had to kill Lyme bacteria. Lyme was a big deal, but this time it wasn’t a nutrient problem. It was a biofilm problem.
In their past protocol, the doctor hadn’t done anything to get through the biofilm. This is crucial because biofilm is one of the main ways that Lyme protects itself.
Biofilm is like a shield that surrounds Lyme bacteria and prevents antibiotics, herbs and your immune system from reaching and killing the bacteria. If we don’t break down that biofilm, then a protocol can fail.
This particular person didn’t have as much joint pain as the previous patient we mentioned, but they had intense nerve problems: burning, tingling, neuropathy, etc. Once they were done killing the bug, they needed to help their nerves recover.
We’ve also found that hormones play a huge part in almost all rehab programs. You need the proper hormones to rebuild muscle, but you also need the right hormone levels to rebuild nerves. For men, testosterone is crucial for helping nerve symptoms. Estrogen and progesterone are extremely important for women as they rebuild and begin to heal irritated or damaged nerves.
You can kill the Lyme and other infections, but if you still have symptoms like joint, muscle or nerve damage, you may not realize the progress you’re making. It is possible you need more approaches to kill the Lyme, but it is also possible you need more help healing your body after the Lyme is gone.
Patient example No. 3: Co-infections and detoxification issues
This person thought they were in a Lyme fight, but they had actually gotten rid of the Lyme. However, they were dealing with a nasty co-infection.
Babesia, Bartonella, Anaplasma, and Powassan Virus are the four most common co-infections, and there are several others as well. If you don’t get rid of these co-infections, too, you’ll still feel miserable.
This particular person also had problems with detoxing. Every time they tried to do a killing protocol, they experienced so many side effects and Herxheimer reactions. This can happen for many people because as you kill the bugs, the immune system sees the dead bugs and creates more inflammation. You need to effectively clear out the bugs as they’re being killed.
As the immune system reacts to the bugs dying, your symptoms get worse as that inflammation comes up. Which is extremely unpleasant and especially hard on someone who’s already sick.
Patient No. 3 also experienced intense fatigue. They had what I call push-crash fatigue. Every time we tried to do something new, they crashed. This was due to a lack of mitochondrial nutrients. For them, taking Coq10 was vital in helping them get their energy back and for their brain function, memory, etc. to improve.
After we addressed that problem, we slowly increased their physical activity. They had spent years being minimally active because of their intense levels of fatigue. They slowly went from taking 500-1,000 steps a day to 10,000 steps, which is a good active step count to reach.
This is an example of how it takes time, even after getting rid of infections, to rebuild energy and motivation. It took us six months after we thought they were clear of everything to rebuild their stamina to a reasonable level.
Common Lyme program mistakes summary
As each of these patients illustrated, addressing tickborne infections with one, simple approach doesn’t work. Accurate retesting is urgently needed in order to track your progress and figure out what part of the program is or isn’t working. That way you can know what is successful and what needs adjusting.
Our main takeaways are the following:
- The biggest mistake I see is when doctors put patients on a Lyme protocol, yet they never retest to see progress or roadblocks; they only base it on symptoms or the CDC-recommended duration of how long it should take antibiotics to kill the infection. Those approaches don’t work.
- Tracking throughout the program is imperative for several reasons, but one of the most important reasons is this: You can be making progress, yet you don’t feel like you are, so you get discouraged when you could be feeling more hopeful. This is why only going off symptoms by themselves can really trip you up.
- It’s a doctor’s job to assess what parts of the program are working, what parts aren’t, and why. Unless you really look at some of these tests to know if things are improving or not, you’re just shooting in the dark. When you retest (with some of the more reliable tests there are today), you’ll undoubtedly find that some things are improving, but there’s still work to be done.
- We have to base success on tests and symptoms improving. I cannot stress this enough. It gives us a roadmap of each patient’s health and recovery journey.
- Remember our three-tack analogy: The cure for three tacks in your foot isn’t to just take Advil, to only take one out, or to expect to feel 100 percent immediately after taking all three out. And when all three are out, recovery and healing still need to take place.
- Following our four-stage process, we want to personalize your entire program and recovery journey based on measurable tests and your symptoms. That paints a much more accurate picture and will help you feel well again faster.
- Symptoms usually begin to leave as you get rid of infections and start adding in essential nutrients and movements your body needs to heal. When you support and fix enough things, your body can begin to function better.
Failure can turn into success
As the patient, you deserve this attention to detail so your hard work will pay off in the end and you can be successful at overcoming Lyme and tickborne diseases.
Failure is success, if we learn from it.
By Dr. Kyle Warren
Edited by Meghan Feir Walker