Tardive Dyskinesia, Chronic Lyme Disease, and Infection

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As I was finishing this article a friend alerted me to the work of Ross Douthat, who has written a lot about his experience with Lyme disease for the New York Times. I like that this is exactly how I’ve framed our common lived experience and thus I’m letting him describe how I came to write this article:

“For chronically ill people trying desperately to get better, actual science — the world of hypothesis, experiment, result — matters in the most urgent way. It’s just that they have entered a territory where there aren’t any clear authorities, any definite consensus. And so a lot of the strange things they end up doing are just a kind of home-brew versions of the scientific method — what it looks like when ordinary people have to effectively become their own doctors and do science on themselves.”

What follows below is a scientific story based on a hypothesis because I have indeed become my own doctor and done science for myself. I have been living the experience that informs it. I have included a list of articles at the end that supports the hypothesis.

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Tardive dyskinesia (TD) is, in part, a medically induced (iatrogenic) INJURY associated with almost 2000 different drugs often used in psychiatry, gastroenterology and Parkinson’s. People are rarely told of the risk. While it’s often referred to as a drug “side effect,” grave injury and permanent disability is not a side effect. It is a life-altering, permanent change that alters peoples lives dramatically and catastrophically.

What has been unknown in psychiatric circles is that dyskinesia is also often caused by infection. The Bartonella bacteria, which is almost always associated with chronic Lyme disease, can cause dyskinesia too and it looks and is experienced the same as “tardive” dyskinesia. The “tardive” description is tacked onto the term “dyskinesia” in psychiatry because its appearance is “delayed” for some period after starting antipsychotics (and lots of other pharmaceuticals including antidepressants, as indicated above.)

The manifestations of dyskinesia vary broadly and so does severity. This blog concentrates on the phenomena as misunderstood within psychiatry and how it’s being treated in Lyme disease. Highly experienced Lyme-literate doctors know that tardive dyskinesia may be due to the infection because they routinely treat it when treating the Bartonella infection. Bartonella is one of many possible co-infections associated with Lyme disease and one of the most common.

Illustration of a brain on a blue background. A magnifying glass shows viruses inside it.

In my case, I knew that that I had Lyme long before I tested positive. I was also diagnosed with TD because of my history of being “treated” with psychiatric drugs. Yet, after testing positive for Lyme disease and being treated for it, for many years I had no choice but to use complex self-treatment for my tardive dyskinesia. I was mostly inspired by Stephen Buhner, a master herbalist whose work is used by MDs as well.

Over time, I became convinced that the tardive dyskinesia, which I had always associated with the drug withdrawal and injury, was also an expression of infection. This was an awareness that came about via somatic imperative as I was forced to learn to listen to and respond to my body in meditation so that I might heal. I had become my own doctor and scientist. I researched continually and started to put both my experience and that which I learned in reading together.

I have since found several MDs who corroborate my insight and treat TD in some of their patients as part of such Lyme-associated infections.  I’ve encountered people in Lyme disease circles who had tardive dyskinesia. One of the critical psychiatry psychiatrists I am familiar with is apparently testing all of her patients for Lyme because it’s become clear to her that Lyme is often associated with phenomena that would otherwise be treated with neurotoxic psychiatric pharmaceuticals, which will then make said “psychiatric” illness worse.

Tardive dyskinesia is both a pharmaceutical drug injury and an infection, and this appears to be the mechanism of action: the pharmaceuticals destroy the blood/brain barrier by causing oxidation. The oxidative damage of the blood/brain barrier allows bacteria, viruses, and complex biofilm to flood the brain, causing dyskinesia and potentially other forms of neurodegenerative disease and metabolic issues.

The infection that is allowed into the brain is often (at the very least) Lyme disease. As such, in many people who have been on psychiatric drugs, the path to TD may be two-fold: the drugs harm the blood-brain barrier, and then it is the invasive infectious agent that causes the dyskinesia.

In my experience networking with hundreds of people in both populations—those with a diagnosis of Lyme disease and those with a psychiatric diagnosis—I am struck by how similar the dyskinesias are.

Moreover—and this is the tragedy—people who develop “tardive” dyskinesia are told they have little hope of getting better and are not offered treatments that heal. Instead, they are told they can take yet more drugs to treat the TD.

The two most popular pharmaceuticals (Austedo and Ingrezza) are associated with further degenerative diseases that include “parkinsonism.” Yes. They make the condition worse. Here we see that on one hand, pharma causes TD in those with psych diagnoses, who then take more pharma that cause “Parkinsonism.” On the other hand, those with Parkinson’s are given pharma that then cause TD!

There are some people whose TD disappears after they stop taking the offending pharmaceuticals, but this is rare and generally only in instances of brief pharmaceutical use.

I’m finding that highly experienced Lyme MDs know that dyskinesia associated with Lyme disease is part of the disease. I’m not alone in coming to this insight. The thing is, Lyme and other systemic infections—I’m guessing most chronic illnesses have some aspect of this as microbiome issues—are the most neglected serious, disabling diseases in Western medicine. Yet, many MDs deny their existence and psychiatry calls those who have these infections delusional. My sister, a Stanford-trained surgeon, has never shown an interest in what has happened to me and I can only assume she is among those MDs who do not acknowledge these crippling diseases.

Functionally and in terms of pain, it can be much like cancer. People end up bedridden in agony for years at a time. Many of us feel this up close and personal as society and medicine neglects what is becoming a segment of society: the chronically ill. There are more and more Lyme-literate and Functional Medicine doctors who do recognize the impact of infections and parasites on the human body. It is marginally easier to find care now than it was when I was first faced with this, but it’s still almost impossible to get good care if one is not very wealthy. Lyme doctors, if they are going to do a good job, can’t really afford to accept insurance, and thus most people, except the financially very well off, will eventually be wiped out.

Lyme disease and co-infections routinely destroy people financially and many have to go without professional care at all. I have done that for many years and just recently thanks to the rise of telemedicine I have found two different people I’m consulting with for support, validation and prescriptions as necessary that I was having a hard time getting without an MD.

Infections that are locked up in biofilm don’t show up in labs. It does not make them any less real but it does allow most medicine to tell people nothing is wrong with them and send them on their way in despair. Biofilm-encased infections can vary from completely harmless and contained to raging chaos and disability. Pharma in my instance (and the ensuing withdrawal illness) created outrageous opportunistic infections. The stuff in biofilm is, in general, antibiotic-resistant; hence, chronicity of all sorts can develop. In my case I didn’t test positive for Lyme until I’d been detoxing and taking dozens of herbs for the Lyme I knew I had . . . that finally blew open the biofilms. I then tested positive for six different infections including Lyme.

I recently learned from a Lyme-literate MD that only 70% of people currently understood to have Lyme will test positive for Lyme because the tests are simply not reliable. I can imagine there are many more people who would fall into that grey zone. Repeated false negatives are not unusual. This is critically important to understand as it’s currently being mishandled from every angle.

Infection causes oxidative stress, and detoxification is a huge problem for those with Lyme disease and often for those of us coming off psychiatric drugs who encounter protracted withdrawal syndrome. Multiple sensitivities to foods and substances are caused by detoxification issues and those are caused by underlying serious microbiome issues including systemic infections. Therefore, I think it’s worth testing for Lyme in cases of protracted psychiatric drug withdrawal as well. Unfortunately, this isn’t discussed in psychiatric circles, nor is it being discussed in withdrawal circles.

It took me about seven years of knowing I had Lyme before I tested positive. In my case it seems I had to bust open the biofilm first. I had a somatic experience during detoxification with antimicrobial herbs which made it clear to me that I had ruptured the infectious container that is the biofilm.

The microbiome is foundational in all human health and well-being. Our health is a kaleidoscopic complex of all the things in our unique lives and circumstances.

Hippocrates said that all disease begins in the gut. This is starting to be widely recognized/remembered. The gut, however, is not the only part of the body with a microbiome. We are microbiome. The human being is more micro-organism than not. The human microbiota consists of the 10-100 trillion symbiotic microbial cells harbored by each person. When the brain has an infection due to a leaky blood/brain barrier, it is part of our greater microbiome as well.

Chronic “Lyme” is always associated with co-infections. Many go untreated and unrecognized. People with Lyme are medically gas-lit, much like folks with psychiatric diagnoses.

Biofilms are formed with toxins from the environment, including heavy metals and chemicals in foods and pharmaceuticals as well as microorganisms that include yeast, molds, viruses and bacteria. These little beings are not stupid. They are wickedly smart and highly adapted to taking advantage of opportunity. Many people do not succumb to the same micro-organisms if their pharma histories are minimal and they don’t have significant trauma. The variables that make people more or less vulnerable are endless. You can have these bacteria in your body and not get sick if their populations are not taking over the body and brain. This all is only beginning to be researched in the scientific study of the microbiome.

In medicine nothing should be presumed. You want to know the actual cause. Testing for infection makes good sense and it’s negligent to not rule it out. That said, there are a lot of problems with testing and many people have to start treating on their own given the lack of medical interest. There is much more that needs to be considered when testing and that will have to be another paper.

The microbiome is foundational to all well-being and disease. This has become clear in the research. This is what medicine needs to get on board with and lags dangerously behind much emerging and documented science.

References

Tardive dyskinesia: treatments, associated drugs and conditions (47,808 reports) – eHealthMe https://www.ehealthme.com/condition/tardive-dyskinesia/

Defining the Human Microbiome https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3426293/

Oxidative stress and tardive dyskinesia: pharmacogenetic evidence – PubMed https://pubmed.ncbi.nlm.nih.gov/23123399/

Oxidative Stress in Infection and Consequent Disease – PMC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5309413/

“Neurological Manifestations of Bartonellosis in Immunocompetent Patients: A Composite of Reports from 2005–2012 | OMICS International” https://www.omicsonline.org/open-access/neurological-manifestations-of-bartonellosis-in-immunocompetent-patients-a-composite-of-reports-from-2314-7326-3-124.php?aid=15914

Bartonella and Connective Tissue Disorders https://www.battlingbartonellosis.com/post/bartonella-and-connective-tissue-disorders

Bart and other infections and TD in children “Behavior Outbursts, Orofacial Dyskinesias, and CSF Pleocytosis in a Healthy Child” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3124105/

“Study Finds Evidence of Bartonella Infection in Blood of Patients With Schizophrenia” https://www.hmpgloballearningnetwork.com/site/pcn/article/study-finds-evidence-bartonella-infection-blood-patients-schizophrenia

Lyme Disease Diagnosis | LymeDisease.org https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

Options and Limitations in Clinical Investigation of Bacterial Biofilms – PMC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6056845/

Healing Lyme Disease Coinfections https://www.simonandschuster.com/books/Healing-Lyme-Disease-Coinfections/Stephen-Harrod-Buhner/9781620550083www.simonandschuster.com/books/Healing-Lyme-Disease-Coinfections/Stephen-Harrod-Buhner/9781620550083

Clinician Barriers to Providing Care: Why Patients Can’t Get the Care They Need https://www.globallymealliance.org/blog/clinician-barriers-to-providing-care-why-patients-cant-get-the-care-they-need

Options and Limitations in Clinical Investigation of Bacterial Biofilms – PMC https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6056845/

Healing Lyme Disease Coinfections https://www.simonandschuster.com/books/Healing-Lyme-Disease-Coinfections/Stephen-Harrod-Buhner/9781620550083www.simonandschuster.com/books/Healing-Lyme-Disease-Coinfections/Stephen-Harrod-Buhner/9781620550083

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

12 COMMENTS

  1. Really interesting stuff! I admire your ability to trust yourself within such a crushing system; your clearly profound, informative and insight-producing relationship to your body; and your ability to weave together your independent and collaborative research with your lived experience.

    For my part I am just now learning about the blood/brain barrier compromise that these drugs and others cause. I have been almost unbelievably sensitive to all drugs and susceptible to all kinds of withdrawal symptoms in a way that doctors tended to dismiss or discount. But intense early exposures to antibiotics, traumatic abuse and psychiatric drugs would explain this I gather.

    • insane amounts of sensitivity was my first issue too. I came off drugs years ago and thought it was just psych drug withdrawal…turned out it was these infections as well…made much worse via the drug injury. My best to you that you find your way through the quagmire. We certainly all have our very individual journeys.

  2. Monica, thank you for this article. I am glad to see you writing more, and this particular article is very educational for me. It is interesting but alarming to read how unconcerned and ignorant non-psychiatric doctors are, but hey, we are patients of the U.S. health care system, which as we know is ranked as one of the worst of the more developed countries.

    • hey Ted, great to see you. I’m glad you appreciated the article. Lyme is so mishandled that a lot of people with Lyme get psychiatrized just because they have Lyme and doctors are trained to disbelieve them…it’s a gaslighting machine. So there is a lot of cross-over between the two populations I’ve found…Yeah. MDs remain highly dangerous for me and so many of us! Peace to you.

    • the purpose of the article was to suggest that both dyskinesias are essentially the same thing. I can tell you that all these one item nutrional “fixes” for TD (including manganese) rarely if ever get much of a result in serious or longterm TD. In general and at best there might be brief or very small improvements. Having interacted with 100s of those with TD now in health groups dedicated to such I can say that no one I’ve interacted with has reported that manganese does much of anything at all. Manganese is an important mineral however and I’m sure there are times when people simply feel better in general for adding it to their diet if that is what that particular person needs. I’ve personally tried all such “fixes” and I also tend to nutritional issues in my own body in a profoundly holistic way across the board. Something like manganese may, in fact, be helpful as part of a holistically oriented treatment and well rounded diet etc.

  3. Thank you for such a relatable article.

    If you feel comfortable sharing personal experience that will not be taken as advice:

    What has worked for you, and those in your experience, in mitigating Lyme/TD and moving the “life needle” in the other direction?

    If not, thank you for all you have helped in just this article alone, as well as for the work you do and who you are.

    • oh wow, it’s not that I don’t feel comfortable sharing but it’s been a really long haul and so many things take part. I don’t know if you’re familiar with my work but the title of my site is “Everything Matters” because I approach everything in a profoundly holistic way. I haven’t written much in the last few years as I dove into learning about this phase of my healing but there is still quite alot about even my more recent healing journey on that site. I will write more about what I’m up to on my site perhaps now as I did go back to pharmaceuticals briefly after tending to my body with herbals for many years. I didn’t tolerate any pharma for a long time. The antibiotics and antihemetics I’ve taken recently have helped a lot and I still have a long way to go before I can know how much they’ve helped me functionally (in other words, I’m still sick and it’s clear they’ve helped both) … I went off all the pharma recently when my body said ENOUGH and now I’m still tending to my body with herbals, movement and diet as I ever am. It’s possible I’ll do other rounds of the pharmaceuticals. These infections are nasty and all I can say is I”m grateful to have found people and doctors who understand this. It’s a rarity to find truly competent people and I’m still looking for people who can really keep up with me! ha ha…I’ve been at this a long time and learned a whole lot in a world that is only beginning to understand systemic chronic infections and how the microbiome is affected.

      my website is https://beyondmeds.com/

  4. Monica

    So glad you are still writing and advocating for those harmed (including yourself) by the medical model and other weaknesses in our medical institutions.

    You’ve done the research on many levels, and crafted a very comprehensive scientific body of work. I always learn so much from your writing.

    Carry on! Richard