Why I Regret My Lyme Disease Treatment

March 14, 2019

Several weeks ago, someone with a very ill loved one contacted me to ask who treated me for my Lyme Disease and what treatments I recommend. It’s a question I‘ve been asked countless times by friends and strangers alike. For five years, I recommended Dr. Jemsek and pulsed antibiotic therapy. 

However, the paradigm shifting experiences of these last two years have changed my answer significantly. So I think it’s time to address this publicly. 

The honest truth is, I don’t recommend Lyme Disease treatment anymore. In fact, I regret my entire Lyme Disease diagnosis. 

Let me explain why…

When I fell ill in 2012, I did what most sensible people do. I made an appointment with a family doctor, a real doctor, with MD after his name. I was diagnosed with a sinus infection and given antibiotics. I believed the doctor and took the antibiotics. I stayed sick. 

When my health continued to decline, I did what most people would do in my situation. I went back to the doctor for more tests. When the tests failed to diagnose me, I assumed I just had some extra serious sinus issues and made an appointment with an Ear, Nose and Throat specialist (ENT). Perhaps I needed surgery for these terrible sinus problems that were somehow also causing widespread body pain, extreme fatigue, post exertional malaise and brain fog in addition to serious headaches. The ENT ordered a CAT scan showing that my sinuses were perfectly clear and said I was probably having cluster headaches (a neurological problem). 

As I descended into disability, I attended many more appointments with a variety of different doctors. No one could diagnose me. The best I got was my childhood pediatrician speculating that it might be hypothyroidism even though my numbers were within the normal range. 

Then my father went to see his doctor for his annual checkup. They got to talking about me, his very ill daughter that nobody could diagnose. This doctor, also a real doctor with MD after his name, thought he knew what was wrong with me. Can you imagine the hope that gave me? Finally, someone who could put a name on this misery! 

I scheduled an appointment and was diagnosed with Lyme Disease based on symptoms and a positive Western Blot test. I couldn’t recall a tick-bite, never had a bulls-eye rash and didn’t have any major joint swelling. But I grew up in a Lyme-endemic area and was reassured that ticks are tiny and hard to spot and that the the bulls-eye rash and joint swelling don’t always occur. Sometimes the infection can hide inside the body for many years before it becomes virulent. I had a neurological manifestation of the disease and a positive blood test. The doctor put me on doxycycline and encouraged me to read up about the disease on ILADS.org. 

I was relieved! Finally! I knew what was wrong with me and could pursue effective treatment. We immediately noticed that this was a diagnosis steeped in controversy. We tried to educate ourselves on the two positions. ILADS doctors and chronic Lyme sufferers believed Lyme Disease could become a chronic condition and that the infection often survived the standard antibiotic treatment recommended by the CDC. The IDSA disagreed. They acknowledged that symptoms could persist after a 28-day course of antibiotics but didn’t believe it was due to ongoing infection. They called it Post Lyme-Disease Syndrome and offered little hope past lifelong symptom management.

We had our doubts, but we decided to trust the doctor who diagnosed me. The IDSA perspective didn’t offer any hope. At least with the ILADs perspective, there was a possibility of recovery with ongoing treatment.

As the months went by, that possibility of recovery never actualized. It wasn’t long before my doctor encouraged us to find a Lyme specialist. He openly admitted that he didn’t have much experience treating serious Lyme cases. 

The specialist we chose took an integrative approach, combining herbal treatments like the Cowden protocol with a few prescription medications. I continued to decline. By this point, I was bed bound and suffering very severe pain and sound sensitivity along with a myriad of other symptoms. My condition was worsening, but I was reassured that this was expected and only meant the treatment was working.

After six months, I became convinced the herbal treatments were not the answer and that I probably needed IV antibiotics. We ended up at the doors of the Jemsek Specialty Clinic. Dr. Jemsek is one of the top Lyme Disease specialists in the country. Dr. Horowitz is another top specialist we were seriously considering, but we chose Jemsek because he was a board-certified infectious disease specialist. Plus, I now had serious doubts about all the naturopathic treatments Horowitz was using in addition to antibiotics. I wanted “real” science and was ready for some “real” medicine.

Well, all that medicine left me even sicker than before. I do believe the 9 months of IV antibiotics killed some pathogens. Probably even Lyme Disease and co-infections. But I couldn’t regret it more. My symptoms and pain levels spiked severely. It was hell on earth and I wouldn’t wish it on my worst enemy. 

Eventually, I made about a 50% recovery from my absolute lowest point. That left me right back where I started. Five years of Lyme treatment to get me back to where I started before the Lyme diagnosis! Something was not right! 

Still, we believed the doctors and continued to spread awareness about chronic Lyme Disease. We encouraged people to watch Under Our Skin and read Pamela Weintraub’s book Cure Unknown. We pointed people to ILADS and recommended Lyme-literate physicians. We were super-careful about ticks

Mercifully, I went on to develop the life-threatening mast cell disease that led me to consider mold avoidance. Mold avoidance turned out to be so effective, not only for the mast cell issues but for ALL my symptoms, that it threatened to undo our Lyme Disease paradigm. In pristine air, suddenly, I didn’t have Lyme Disease anymore. It wasn’t long before that paradigm died the death that it deserved. 

I’m not saying that chronic Lyme Disease infections don’t exist. I‘m pretty sure they do. I’m just saying that whatever infections I had, and I know I had some, they were not the root issue for me. 

From the very beginning, my illness met the criteria for a Chronic Fatigue Syndrome diagnosis (also known as ME/CFS). I was a textbook case. Unfortunately, I rejected the possibility that I had ME/CFS because the Lyme community, including doctors, said that ME/CFS was a dead-end diagnosis. And in some ways, it is. It has a trivial sounding name and no one knows how to fix it. The best the doctors can currently offer is lifelong symptom management. 

But here’s the thing. I’ve come to the conclusion that chronic Lyme Disease is also a dead-end diagnosis. Doctors offer you a solution but that solution rarely delivers. Often, as in my case, it leaves you sicker than before. I only know of one seriously ill patient who has recovered vibrant health by pursuing antibiotic treatment for chronic Lyme Disease. The two others I know who made some significant progress, later went on to relapse. 

So, I’ve decided I’d rather take a dead-end diagnosis (ME/CFS) that is now recognized by the CDC as a serious disease, accurately describes my symptom pattern, and doesn’t lead me to pursue expensive and damaging treatments than a dead-end diagnosis (Chronic Lyme Disease) that isn’t recognized by the CDC at all and leaves me in the exact same place, or worse, anyway. 

Here’s the thing. If I had accepted the diagnosis of ME/CFS to begin with, I probably wouldn’t have wasted so much time in the hellhole that is antibiotic therapy. I probably would have realized the doctors didn’t have any real answers sooner. Perhaps I would have taken responsibility for my own health sooner and maybe even discovered mold avoidance. Just because there are no CDC-approved answers doesn’t mean a disease hasn’t been accurately described and identified. Just because the doctors don’t know why things went wrong doesn’t mean there’s no value in understanding what went wrong. 

Erik Johnson was one of the first ME/CFS patients to be examined by Dr. Cheney. Erik was present during the Lake Tahoe epidemic and his observations led him to conclude that the why has something to do with toxic mold. Possibly ordinary molds becoming more toxic in the presence of certain man-made chemicals. Perhaps the toxicity from these extra bad molds accumulates in the body and causes all sorts of dysfunction that allows a variety of pathogens to take root. Maybe even Lyme and other tick-borne infections. 

Erik recovered to an almost unbelievable extent by scrupulously avoiding these problematic molds. He can work a job and climb mountains for crying out loud! If I hadn’t gone down the rabbit hole of chronic Lyme disease, maybe I would have heard about his story sooner. Maybe I wouldn’t have spent 5 years and tens-of-thousands of dollars chasing answers in the wrong direction.

In the end, the Lyme community was right that I shouldn’t settle for lifelong symptom management and that it’s important to keep searching until you identify a root cause. But I’ve come to believe they were wrong about what that root cause is. 

Of course, my story is still unfolding, so I can’t claim to know with certainty that mold avoidance is the complete solution. But I do know that it is moving me towards a real recovery in a way that nothing else ever did. This is more than symptom management and the slowing down of an inevitable decline. This is true healing.

And I know many other patients who are experiencing this same amazing healing. I have a good friend, whose adult daughter was on death’s door after years of Lyme Disease treatment. She couldn’t walk, could barely talk and struggled to eat anything. She was down to only 68lbs. When my friend, her mom and caregiver, started learning about mold avoidance, she thought, “This sounds harder than going to the moon.” Given her daughter’s critical condition, she and her husband courageously chose to pursue it anyway.

Her daughter is now walking, talking, eating and cooking. She even went for her first run last month! No one ever came back to me with a story like this after my recommendations to start Lyme treatment. Not. one. person.

Bryan Rosner, a well-known Lyme Disease author, has also discovered the power of mold avoidance. In his new book Lyme Disease Supercharge he shares that mold avoidance was the single most helpful thing he’s ever done for his health (chapter 8).

He goes on to write:

“[I’ve] realized that ‘Lyme disease and co-infections’ aren’t the primary problems in this chronic illness, but instead, mold is the primary problem. Lyme disease is just an opportunistic infection which happens to thrive in the presence of mold exposure.”

It’s not that attacking pathogens directly is never helpful or necessary. It’s just that all the antibiotics in the world aren’t going to help someone whose illness is primarily a toxicity problem. I don’t know for sure if everyone with chronic Lyme Disease has an underlying toxicity problem, but I believe strongly that those who are failing treatment would benefit from trying out a new paradigm. 

For Further Reading:

CDC Website Pages Now Mention Mold Connection and Chemical Sensitivities 

Back From The Edge: How One Man’s Discovery Brought Him From Desperately Sick with Chronic Fatigue Syndrome to the Top of Mt. Whitney in Six Months

Lyme Disease Supercharge: The Revolutionary Approach to Getting Better When All Else Fails

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19 Comments

  • Ruth Meyer

    Praying for you, Ana! It’s been amazing to see your journey through mold avoidance, and all you have learned along the way, from personal experience, and those you’ve met and seen on their own journeys. Onward to another day in the light of God’s mercy and grace!

    March 14, 2019 at 7:56 pm Reply
    • Ana Harris

      Thank you so much Ruth! ❤️

      March 18, 2019 at 10:02 am Reply
      • Kwm

        Happy for your recovery but you regret antibiotics? Why? They cut the bacterial load and allowed you to narrow down— and eliminate— the one last known obstacle to your wellness…mold toxicity.
        Our family tested positive for Lyme in 2012 and it took us 7 years to beat it. But beat it we did. Not wanting to be a slave to antibiotics, we moved to exosome infusion and that ended it.
        Interestingly the people who had rejected antibiotics in our treatment group, and went straight to exosomes, did not do as well.
        As you know, Lyme and co’s are not “a one size fits all.” But leaving antibiotics out of the equation simply leads to more stress on the body—and a replication of not just the borrelia and bartonella bacteria but all the worms and nematodes the tick injects in our bodies—which reproduce, with the Lyme in their systems! And thus in ours.
        So parasitic removal of not just Babesia but worms in general, is not going away with a mold removal protocol.
        Btw. The exosome treatment plan tested for mold toxicity, heavy metals and then a global diagnostics machine monitored how every organ and system in the human body healed.
        For those who cannot afford exosomes, at the very least follow Dr. Klinghardt’s recommendation for parasite removal.
        And please change your headline. The reason you are healed now is because your body, though it was extremely difficult, eliminated much of the bacterial infection—thanks to antibiotics.
        You tested positive for Lyme. Unless you caught it within the first week, you had years of replication of bacteria and parasites—in addition to the mold and possibly heavy metal component.
        Glad you are healthy but Lyme patients need to cover all their bases and a program like Jemsek’s or Klinghardt’s— or any other LLMD— is a good place to start.
        It is science.

        September 19, 2020 at 10:22 pm Reply
  • Abby M Hartman

    Thank you for sharing your story! I’m so sorry you went through all that. I was also pushed toward MCA and mold diagnoses, but that was more of the same pseudoscience that got me in trouble in the first place.
    Please take care. https://www.itstrainingcatsanddogs.com/blog/2019/2/11/lyme-warrior-no-more

    March 14, 2019 at 10:45 pm Reply
    • Ana Harris

      I’m so sorry you also endured similar treatments. Though, depending on how you define “pseudo-science” I probably wouldn’t agree that the primary problem is “pseudo-science.” Though certainly there are medical professionals who are too confident in their own intellegence and treat their unproven theories as though they are facts. That’s definitely a problem. Certainly there are lies that masquerade as scientific facts. That’s a problem too. There’s good science, there’s bad science, and there’s information about these illnesses that hasn’t been discovered yet. I don’t think what got me into trouble was pseudo-science… it was trusting the experts and ignoring my body’s clear signals.

      March 18, 2019 at 10:13 am Reply
  • Anna

    Thank you for sharing your story! I have really appreciated your mold journey story. I have recovered from chronic Lyme disease but without any antibiotics. Fortunately, I am not living in a moldy environment although I had exposure in childhood. From your story and many other stories, I think many people should be very wary of multiple, long-term antibiotic treatment. I think the power of the herxheimer effect is vastly underestimated. Medical professionals and patients alike need to understand that these effects can be life-threatening and deadly.

    March 15, 2019 at 7:43 am Reply
    • Ana Harris

      Exactly, Anna! I completely agree with you!

      March 18, 2019 at 10:14 am Reply
    • brian

      Hi Anna. What did you do to recover from your chronic lymes?

      February 24, 2020 at 6:17 pm Reply
  • Whit

    So proud of you for always pursuing what is best for you! You are amazing & i’m So honored to be your friend!
    I love you so much!

    March 15, 2019 at 4:29 pm Reply
    • Ana Harris

      I love you so much too Whit! I miss you! 💕

      March 18, 2019 at 10:15 am Reply
  • Robert christ

    I got sick in 1997 so it’s something like 22 years now. I tore my house apart and found black mold in the sub-flooring, Fuzzy black mold inside the wall where the ac drip pan leaked, and green black mold on the joist’s (wood beam’s or supports) under the floor where the kitchen had once flooded. I camped in the back yard under a carport roughly a year and a half after I took ill suspecting the house and specifically the mold in the house. Eventually sold the house at way under market value but still struggle to this day with symptoms that seem to be driven not just by mold but other things. Like medications and alcohol, and nicotine, for instance. The purchaser of the home rented it out did very little remediation despite my fully disclosing the problems. My theory is that mold sensitivity is the result of some type of underlying illness as opposed to the cause of CFS. I practice what I call “common sense avoidance”. Or in other words I only avoid mold that can be detected by testing. I don’t throw anything away unless I can see visible mold on it. I don’t worry about bringing “contamination” into my home. I live in a metal building insulated with fiberglass batting and sheet styrofoam. Unlike in ordinary housing. I can pull everything out and inspect it for water intrusion and subsequent mold. I still struggle with the illness and my activity level is probably only 1/5th to 1/2 of what I was pre illness. There are so many variables. Like I can sit in front of the computer or watch tv all day. If I were to go out in my yard and work I can do a couple of hours of light work. If I push myself I might crash the next day. My crashes are much lighter than they have been in years past. I’m coming out of a PEM crash right not from drinking about 2 shots of whisky at night before bed and working out in my yard for 6 or 7 hours. Crashes are still much lighter than years past. When I stay with my dad in his 20 year old home I get sick but not bed ridden. So I don’t even trust conventional housing. Especially when they are closed up. I didn’t even mention gluten. I posted on phoenix rising about that under the handle of “antares4141”

    March 29, 2019 at 7:26 pm Reply
  • robert christ

    So many variables and confounders. I had a whole array of symptoms that disappeared when I quit gluten 8 years ago. About 6 months ago I started eating gluten again and it doesn’t seem to bother me. None of the symptoms came back.
    The point I got started on but didn’t convey with the house is that none of the renters ever to my knowledge got sick. I lived in it for 14 years without issues. I was exposed to pesticides occupationally. And think that might have had something to do with my condition. But then it could be lyme, herpies, eptein barr? Some other yet to be discovered pathogen? I doubt I’ll ever know the truth.

    March 29, 2019 at 7:32 pm Reply
  • Emily Stallings

    Ana,
    We’ve been following you for awhile now. Your story is so similar to our son’s it’s eery. Chronic fatigue, pain, disability– a Lyme diagnosis out of the blue. Treatments that made him more sick, not better. Thousands of dollars down the drain. Dropping out of school, stuck on a couch wrapped in a blanket for years on end. Then, a decision to try mold avoidance which led to miracles and more insight as to what the root cause really was. Like I said, I read your story and weep for sorrow for your pain but also for relief that we are not the only ones going through this. We have recently moved from the midwest to the dry southwest as well. Hugs to you!

    April 25, 2019 at 4:21 pm Reply
  • Lorene Peetz

    Excellent! Thank you for your honesty. It is important to be a student /steward of our own health. We seek wise counsel, but ultimately seek the Lord and His wisdom. So much to be said. So much needs to be redeemed, reclaimed in the area of healthcare. As we seek and trust the Lord through it all, He will give wisdom. (James 1:5-6)
    We will grow in our relationship with Him as we learn about His marvelous design and incredible mercy.
    Your witness to God’s faithfulness is great!
    Praying for you and Brett. 😌

    April 29, 2019 at 6:59 am Reply
  • D McDonald

    I have just read your story. I am a friend to people who have mold and Lyme concerns as well as mites. I am a nurse and I do full-time ministry work and my heart goes out to you. I have had two children who had very unique problems but have been Overcomers and are on the other side and well now. Their concerns look very different from yours but had a great struggle as well. We feel like we’ve been through the war and won. I do want to encourage you and let you know that Jesus loves you very much. You were created in God’s own image to have a personal relationship with Jesus. If you are not already I would implore you to pray every day and to read the Bible. Start and Matthew are John. Pray and invite Jesus to into your life yo live your life for you and pray and invite the Holy Spirit to help you because He will. May the Lord bless you and keep you close to Him.

    October 21, 2019 at 10:35 am Reply
  • Casper

    You write: “I’ve come to the conclusion that chronic Lyme Disease is also a dead-end diagnosis. Doctors offer you a solution but that solution rarely delivers.”

    Actually I don’t think Lyme doctors offer any complete solutions, nor do they promise that you will be cured. On the contrary, they are extremely aware that chronic Lyme treatment is difficult, extremely long-term, that nobody has the perfect protocol (yet), there is no wonder drug, side effects and difficulties are more common than not, and more would claim that Lyme is probably un-eradicatable than those who would claim it can be removed completely from your body. Also, many Lyme-litterate doctors completely recognize the role of mold, viral co-infections, mast cell activity etc etc.

    We are all different and if a patient has specific symptoms, then special attention must be given to specific conditions such as liver stress, mold, histamine or whatever.

    Thus, I don’t think you can dismiss chronic Lyme as a concept just based on your personal case. It’s possible that you have been misdiagnosed, or that you had it and got better due to the treatment, and/or that the treatment lasted longer than necessary, and/or that you had a mold issue along with Lyme (and possibly that more attention should have between given to that issue), or that you developed mold sensitivity and mast cell activation alongside or as a side effect of the treatment. It’s all very complex.

    December 11, 2019 at 7:20 pm Reply
  • Erica

    I have Lyme and went to Dr. Jemsek for treatment, I also got so much worse. Since then I’ve only found relief from the book Medical Medium. He explains that Lyme isn’t a bacterial infection (hence why antibiotics don’t help) he shares how to change your diet to starve the virus that causes Lyme. Please do give it a read, it saved my life. Thank you for sharing your story, it’s nice to know we’re not alone, sending love and healing to you!

    December 29, 2019 at 11:09 am Reply
  • KAM

    Only able to scan this one. But, I have come to the same conclusion. I do not know if the abx helped or not. I do not know how i would be if i had not taken them. I do know i no longer test positive for neuroborreosis (sp?) . I still am positive for bart and babs.

    But, I no longer want to take abx I want to get out in clean air first.

    March 10, 2020 at 9:47 am Reply
  • Rich

    Hi Anna! I have a quick question for you:

    Per your ME/CFS diagnosis, do you (did you*) experience the classical PEM symtpom that is the hallmark of ME/CFS? As in full on autoimmune, flu-like sickness response after exertion? Not like “my muscles hurt”, but more of a “I’m coming down with a sickness” type of response.

    November 28, 2020 at 10:20 am Reply
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