Cervical Dystonia Case Review

by Robert L, Dec. 15, 2021

Philosophy and Approach

The focus of traditional medicine practitioners is to treat disease and injury, while alternative medicine practitioners focus more on what keeps us healthy.  I believe both methodologies are necessary for our long-term good health.  But there is a major variable missing in this equation, that is our personal involvement and lifestyle choices!  These lifestyle choices include, but are not limited to proper diet, exercise, sleep habits, self-education, controlling toxic exposures, and going to see the doctor when needed.

All too often, myself included, we let our health slowly decline, ignoring warning signs and self-justifying poor lifestyle habits, until a major consequence finally whacks us hard enough to wake us up.  Then we run to the doctor and ask for a miracle pill to cure us.  But even if that miracle pill exists, it usually only works for the short term.  Our bodies continue to decline, and eventually the pill stops working, and we ask for a different miracle pill.  We fail to identify and do the hard work to try to correct the root causes of the problem and are eventually doomed to the known outcomes of degenerative disease.

I was lucky, in a sense.  I had the funding to try both the alternative medicine approach and the insurance to take the traditional medicine approach to my debilitating cervical dystonia. 

The traditional medicine approach was far more expensive, with projected Botox injections billed at an incredible $30,000 — $40,000 USD annually for the rest of my life.  However, the traditional medicine bills were mostly coverable by insurance, with some persuasion.

The alternative medicine approach was also not cheap, as naturopathic doctors (NDs) are no longer covered by most  insurance carriers in the USA.  Insurance does offer greatly reduced rates for testing at national labs, and will pay for tests ordered by NDs, within some normal range.  For example, I had several manganese whole blood and RBC tests in one year ordered by an ND, and the insurance-negotiated rate was around $40 USD each test, 15% of the private-pay rate.  On the other hand, two hospitals (traditional medicine) did not offer manganese testing in their labs, so doctors couldn’t order them, and the neurologists I saw were not interested in any of my lab results at all.

Now that I’m in remission, entirely due to the alternative / systemic health approach, I only need to see my provider around twice a year to keep me on track, and I have reduced my supplementation to around $2,000 USD annually and plan to reduce it further.  Also, since I can now return to work instead of being permanently disabled, I can happily earn my living again, and pay for my supplements.

Lifestyle Choices

I have no doubt that changing my lifestyle choices was essential to my recovery.  The primary choice that helped my recovery was identifying and reducing toxic exposures, particularly air pollution.  But you don’t need to believe me. Instead please read this 2020 scientific research summary which shows that PM2.5 pollution, even in the US EPA green range (<12 mcg/m3, or AQI < 50) confers higher risk of Parkinson’s Disease and Alzheimer’s Disease [1].   In this website we will discuss practical lifestyle changes you could make to mitigate these types of risk factors in your situation.

Team

My ND diagnosed me with manganese-induced cervical dystonia after getting the first round of blood tests back.  This is quite an incredible feat since most general practitioners will only see roughly 5-6 cervical dystonia patients in their entire careers, and CD presents more like a muscle issue than a neurological issue.  Also, in many practitioner’s minds, manganese induced neurological disease can only occur when people are in high risk occupations such as welding.  I was not in a high risk occupation, so I will share research as to why even exposures to ordinary industrial air pollution can contribute to dystonia and Parkinson’s Disease progression, and what to do about it.

My “systemic health” team grew over nine months and eventually included: 

  • My primary, local ND, who ordered all the testing.  He had many years of experience as an ND, but also did research and consulted with his mentors for my case.
  • My secondary ND, who had special expertise with heavy metals toxicity and found me the genetic test and geneticist below.
  • A geneticist, who advised my NDs on slight but important adjustments to my supplementation based on my genetic detoxification profile.
  • A “holistic” MD, who provided Calcium EDTA IV chelation at her facilities
  • An acupuncturist, who was also a muscle and joint adjustment specialist willing to come to my home.

Both NDs said that we were venturing into unknown territory but were confident that I would regain some of my neck motion if we identified and corrected my systemic health issues.  They warned, however, that the road would be bumpy and my condition was likely to get worse before it got better, and there were no guarantees. 

My NDs reviewed current research, discussed my case with mentors, and would openly discuss my research without taking offense.  This was a key factor in my remission and recovery.  For example, when I found that some people in the Parkinson’s Disease community were successfully using the artificial sweetener mannitol to reduce symptoms, one ND congratulated me and the other helped me set a dosage because mannitol affects the gut biome.  In contrast, people in the Parkinson’s community report that the best reaction they get from neurologists is usually “placebo effect, but probably not harmful” so they can keep taking it. 

Research shows that in a test tube, mannitol can break up misfolded alpha-synuclein clusters that are behind many PD cases.  However, mannitol has also been found too large to cross the blood-brain barrier.  But more recent research shows that misfolded alpha-synuclein can actually originate in the gut and travel to the brain via the vagus nerve.  Mannitol can certainly operate in the gut!

On this website we will explore substances like mannitol with the help of our research team.

Symptoms

It was easy for me to ignore many of these symptoms as normal signs of aging.  However, research shows that the rate we each age is greatly determined by our underlying systemic health.  For example, people with diabetes age much faster than normal if they don’t control their blood sugar.  

Longer term health history

  • Unstable gut / irritable bowel syndrome
  • Increasing sleep apnea events, even with CPAP
  • Fatigue / randomly falling asleep
  • Hyposmia (reduced sense of smell) for many years
  • Various dystonias in my side of family tree (genetic influence)

Initial complaints to ND

  • Neck pain
  • Neck tightness / control issues, especially in cold temperatures or high stress.
  • Head bobbing up and down while walking.  This looked much like Federico Bitti’s early symptoms of cervical dystonia shown in his TedX talk
  • Abdominal pain / gas
  • Disturbed short sleep, 1-6 hours/night, often woken up by popping sensation in my head.

Symptoms that developed in the month after I quit working (thereby reducing manganese exposure).

  • Kicking and punching during bad dreams, that woke me up.  This symptom often converts to Parkinson’s Disease (see whyrbd.com) for more info)
  • Nightmares, 1-3 / week
  • Reduced sense of balance when it was dark
  • Random twitching of muscles
  • Finger tremor in both hands

Testing

I asked my ND to lump as many blood tests together as possible instead of doing them sequentially.  Sitting in the car all twisted was extremely painful and I didn’t want to take any more trips than absolutely necessary. 

Items marked in red were flagged in testing.  Some other items were off but not to the point of being flagged.  Most of this testing was done in national labs or mail-in labs that have been in business for more than a decade.  I will share some details of the less commonly ordered tests on this website.

Initial Testing

  • RBC Mineral Profile: Chromium, Cobalt, Manganese, Molybdenum, Selenium, Zinc, Copper
  • RBC Folate, RBC Potassium, RBC Magnesium
  • Vitamin D
  • Routine CBC, Metabolic, Inflammation markers

Next Testing

  • RBC Manganese, Whole Blood Manganese (for progress  tracking)
  • Serum lead / nickel levels (to test exposure)
  • Provoked urine metals testing (for toxic metals load)
  • Organic Acids (dysbiosis markers, dopamine metabolism products)
  • Mycotoxins (from mold)

Later Testing

  • RBC Manganese, Whole Blood Manganese (for tracking)
  • Viral antibody titers (indicating activation against specific common low level infections)
  • Genetic health profile (Detoxification genes, Vitamin D metabolism, etc.)
  • Liver function
  • Oxidative stress biomarkers

Key Treatments

In retrospect, we did more treatments than I needed to achieve remission.  This is almost unavoidable because cervical dystonia and all neurodegenerative diseases can have many potential causes, and there aren’t reliable biomarkers to diagnose most of them. So instead we focused on treatments that would help my digestion, detoxification, neuroprotection, and repair systems work more like a normal person’s.  This makes sense because some people at my workplace had 50-100 times the exposure to airborne manganese than I did (but still within state workplace regulations) and most of them did not display neurologic issues. 

Somehow, my system was different and unable to handle long term very low dose exposure to manganese.  As it turns out from later research, my chronic vitamin D deficiency and dysbiosis were likely foundational in my inability to eject excess manganese.  We didn’t know this at the beginning because this information is deeply buried in research less than 10 years old.  However, since my NDs had worked on my vitamin D status and dysbiosis issues from the beginning, we were covered.

It took many months for my body to regain manganese homeostasis (control) after vitamin D levels were raised, dysbiosis was addressed, and manganese exposure was reduced.  I will explain as part of my manganese research article.

Some of the Treatments:

  • Vitamin D supplementation & monitoring to achieve high but safe levels.
  • Dysbiosis treatment using antibacterial herbs and probiotics
  • Neuroprotection using antioxidants and glutathione supports
  • System supports: Omega 3, magnesium, and other supplementation
  • IV Chelation

Some of the Lifestyle Adjustments

  • Identification and reduction of air pollution exposure
  • Low manganese, high fiber and antioxidant, moderate protein diet.
  • No multi-mineral supplements containing manganese
  • Correction of household mold sources
  • More sun, exercise (when able)
  • Home far-infrared saunas
  • Sleep adjustments, melatonin, reduced protein at dinner time.

Neurology Experience

Five months after my initial diagnosis and treatment, my condition had gotten worse after incidental exposures to almost negligible amounts of manganese (e.g. living next to an active train track). I went to see a neurologist to ensure we hadn’t missed something like a tumor, and also hopefully get some relief because by then three of my neck muscles refused to release, even when lying down.  It was so incredibly painful!  I was lying down 22 hours a day, only getting up to wolf my food down, and not even able to see what I was eating.  I thought my neck was going to break.

The first neurologist had the highest ratings of several in my area.  After a few minutes of reviewing my extensive intake forms and checking my muscle condition, he diagnosed me with idiosympathic cervical dystonia (meaning unknown or unproveable cause).  He said the treatment for it was Botox injections into the neck, guided by an EMG. 

I asked about my manganese blood tests showing high levels like a person with liver cirrhosis, and lack of homeostasis.  He left the room  for around 10 minutes.  Then he  told me that he didn’t know what to do with the manganese information, and that I was wasting my time chasing a false hope.  The only treatment for cervical dystonia was Botox.  Then he admonished me for waiting so long to see a neurologist and said that my case had become too complex for him to treat, and he would give me a referral to a nearby, well respected university research hospital which had a neuroscience branch.

There were so many things I wanted to argue, but I knew it was pointless, so I graciously thanked him for the referral.  I had lots of hope that this referral would help me, since a referral from a neurologist was the only was to get an appointment with the university hospital neuroscience center.

The neurologist at the university hospital was much friendlier.  He also diagnosed me with idiopathic cervical dystonia.  I asked him about my manganese blood tests and he said that the only way for him to diagnose manganese -induced dystonia was to do a special type of MRI called a T-1 weighted MRI, within a couple months of exposure.  This would pick up dense manganese deposited in the globus pallidus region of the basal ganglia.

There is no way I would have done an MRI in my condition because:

  • MRIs routinely involve injection of a contrast agent.  Normally it is gadolinium, a heavy metal purported to be safe and readily excreted.  However, gadolinium showed up in my recent calcium EDTA provoked urine tests, three decades after my last MRI.  Interestingly, there are talks to replace gadolinium with a “safer” alternative – manganese!  No way!
  • More than six months had passed since I quit my job – the MRI would likely have picked up nothing.
  • I have an old stainless steel surgical implant still in my body, which is made of 1-2% manganese, so I did not want to encourage its decay.  Microgram amounts matter when manganese is released directly into the bloodstream.
  • There is no approved/available treatment of manganese toxicity in traditional medicine besides chelation, which is not very effective except for possibly sodium PAS, which is no longer being manufactured.    I actually spent many hours confirming this fact through another university hospital’s second opinion program.

The neurologist and I agreed there would be little point in doing the MRI.  The neurologist also offered me counseling, because emotions are often tied to the muscle-control issues.  Think of people complaining about neck or shoulder pain after a stressful experience, for instance.  I declined the counseling since I knew it was not a primary contributor to my condition. However, in this website I will share some of my research into potential biochemical connections between dystonia, PD, sleep disorders, and OCD and depression.  These biochemical connections generally involve disturbed production of serotonin, dopamine, GABA, and other neurotransmitters, and they start in the gut.

For relieving the neck muscles, the only viable option offered was again Botox.  However in my case which included tilting back of the head, it was less likely to work [2].    The neurologist also cautioned that my Botox requirements would likely increase or change locations after a few years, as the immune system developed a resistance to the Botox.   This didn’t make sense to me, as how could the immune system recognize a simple toxin?  Also, how would increasing immunity to Botox be differentiable from the expected cervical dystonia progression over five years, thereby requiring more Botox to counteract?  At the core of this, Botox can only be expected to relieve symptoms.  It has not been shown to slow the progression of the neurological disease, but rather cover it up until it becomes a lifelong disability.  

Ultimately, I accepted a Botox injection because I was beyond desperate.  Nine days later, I ended up in the ER.  To top that off, my muscles didn’t release at all in the following months, so that was effectively the end of my neurologist treatments.  

A third neurologist I had contacted earlier by phone was interested in my manganese research, and actually had research experience into the connection between manganese and movement disorders.  Unfortunately, I was unable to get to her more distant location for an examination due to the intense pain.  Now that I am better though, I am happy to say I have made contact again and believe she can help us on our mission, to improve patient outcomes in CD and PD.

Retrospective

People often ask me what I think was the cause of my neck condition, and what led to my recovery.  The answer is complex, and my everyone on my expert team believes that there were many variables involved, none alone which would have caused my problem.  Furthermore, each condition, including genetic differences, was not all that rare, but the combination was the systemic cause. 

A simplified description of these conditions is as follows:

  1. Genetically high dopamine levels (> 99th percentile) plus slightly elevated long-term exposure to manganese-containing air pollution.
    1. This combination increases the rate of oxidative stress damage to dopamine, which drives neurodegenerative processes that can cause dystonia, Parkinsonism, or PD [3][4].  It therefore seems especially important to control manganese and heavy metal levels when taking L-dopa to boost dopamine in PD [5].
  2. Genetic severe vitamin D deficiency resulting in slow clearance of inhaled manganese.
  3. Chronic Irritable Bowel Syndrome (dysbiosis). Dysbiosis leads to a cascade of effects due to biochemical imbalances [6].
    1. In CD, high SCFA producing dysbiosis is common, and in PD, low SCFA producing dysbiosis is common.
  4. Disturbed sleep.  Deep sleep is the brain’s primary time to detox [7].
  5. Diet [8].

In the first seven months of various treatments to try to correct the above things, my condition slowly worsened.  This is not surprising because in all the research literature I could find regarding manganese, the manganese cannot be permanently removed and the neurodegenerative condition is progressive.

Then an odd miracle happened in COVID-19!  At my wife’s prodding, in order to help protect against COVID-19, I boosted my vitamin D levels from 55 ng/mL to roughly 80 ng/mL.  This is the value that my ND originally asked me to target.  Also, the trains behind my house completely stopped running.  A month later, I slowly started experiencing my first remission, meaning a lot less pain, and some consistent control of my neck.

A month after the trains started running again, I started to relapse But in relapse my CD never got as bad as it was earlier.  Armed with this knowledge, we kept my high vitamin D levels and many of the other treatments I was doing.   We purchased additional air filters and my family shut the windows any time we heard the train coming.  I soon started a second remission, and then we moved temporarily to a coastal location with much cleaner air.  That is the remission I have today, 15 months later.

Note that although many of my genetic differences could be considered bad in terms of contributing to dystonia, I do not consider them genetic defects.  They gave me (and my father) an excellent pattern memory, high creativity, a driven “nothing is impossible” attitude, and a low need for sleep (although catnaps are common!)

Mistakes

During treatment, I made quite a few mistakes that weren’t obvious at the time.  I will share some of them below.

The first mistake was not being patient enough. I tried to rush some of my treatments (e.g. high dose) or tried to add too many new ones at the same time.  Both of my NDs had warned me that it could take two years or more to clear the conditions that had taken years or potentially decades to develop.  They also warned me that metals detox has to be a slow process, to avoid risks.  Starting on a too-high dose of some supplements threw my system off and caused me to temporarily regress.  Trying the Botox out of desperation scared the heck out of my family as an ambulance came to pick me up in the middle of the night.  I’m not saying Botox is bad, but if I had waited a few more months I might have avoided trying it altogether, and recovered faster.

The second error I made was not recognizing how my condition affected my thinking process and mood.  Vitamin D deficiency, dysbiosis, and manganese toxicity can all affect neurotransmitters, and thereby cause anxiety, irritability, obsessive thinking, poor memory, and sleep disturbances.  I pulled back from my connection with family, and that was a big mistake I will regret for a long time.  They needed my support and reassurance as much as I needed theirs.

A third mistake I made before I was diagnosed was to take a multimineral supplement containing manganese, as almost all of them do.  Manganese deficiency is almost unheard of, because there’s 20 times as much as you need in your food. A healthy gut will only absorb 2-5% of it.  But if you have any sort of systemic disorder leading to neurologic issues, you do not want to test your manganese homeostasis system!  (Later, I switched to 6 individual mineral supplements, no manganese, with the help of my NDs.)

Future Directions

Two and a half years after my ND treatment started, 90% of my motor symptoms are gone, and I feel very relaxed most of the time (this is an odd feeling for me, but I’m can get used to it!)   I can easily drive for an hour or more and have a full day of activities without needing to nap.  My thinking is much clearer, making this website easy to write.  Also, I am still experiencing slow improvements in disparate things such as my sense of smell, ability to exercise, short term memory, and overthinking / obsessiveness levels. 

I plan to continue with my supplementation and lifestyle changes.  I will also consult with experts to build a knowledgebase that I can share with all of you.

My goal is not to cure my cervical dystonia.  Rather, it’s to have a more or less normal life, with a second chance for connection with my family and finding fun things to do.  I also want to get back into the workforce doing the things I love, which center around helping others through engineering.

My second goal, just as important to me, is to help at least one other person avoid the lifelong disability associated with the normal path of neurodegenerative disease. If you wish, please join me, or at least say hi if you can, whether you are a patient, caregiver, practitioner, or researcher.  I would love to hear from you.  Thank you.

References

1. Study Finds Significant Link Between Air Pollution and Neurological Disorders, 2020,  https://www.publichealth.columbia.edu/public-health-now/news/study-finds-significant-link-between-air-pollution-and-neurological-disorders

2. Rodrigues FB, Duarte GS, Marques RE, et al. Botulinum toxin type A therapy for cervical dystonia. Cochrane Database Syst Rev. 2020;11(11):CD003633. Published 2020 Nov 12. doi:10.1002/14651858.CD003633.pub4

3. Lin M, Colon-Perez LM, Sambo DO, Miller DR, Lebowitz JJ, Jimenez-Rondan F, Cousins RJ, Horenstein N, Aydemir TB, Febo M, Khoshbouei H. Mechanism of Manganese Dysregulation of Dopamine Neuronal Activity. J Neurosci. 2020 Jul 22;40(30):5871-5891. doi: 10.1523/JNEUROSCI.2830-19.2020. Epub 2020 Jun 23. PMID: 32576620; PMCID: PMC7380961.

4. https://www.weforum.org/agenda/2015/02/what-causes-parkinsons-disease/

5. Olanow CW. Levodopa: effect on cell death and the natural history of Parkinson’s disease. Mov Disord. 2015 Jan;30(1):37-44. doi: 10.1002/mds.26119. Epub 2014 Dec 11. PMID: 25502620.

6. Ma L, Keng J, Cheng M, Pan H, Feng B, Hu Y, Feng T, Yang F. Gut Microbiome and Serum Metabolome Alterations Associated with Isolated Dystonia. mSphere. 2021 Aug 25;6(4):e0028321. doi: 10.1128/mSphere.00283-21. Epub 2021 Aug 4. PMID: 34346706; PMCID: PMC8386414.

7. Vaccaro A, Kaplan Dor Y, Nambara K, Pollina EA, Lin C, Greenberg ME, Rogulja D. Sleep Loss Can Cause Death through Accumulation of Reactive Oxygen Species in the Gut. Cell. 2020 Jun 11;181(6):1307-1328.e15. doi: 10.1016/j.cell.2020.04.049. Epub 2020 Jun 4. PMID: 32502393.

8. Powers KM, Smith-Weller T, Franklin GM, Longstreth WT Jr, Swanson PD, Checkoway H. Parkinson’s disease risks associated with dietary iron, manganese, and other nutrient intakes. Neurology. 2003 Jun 10;60(11):1761-6. doi: 10.1212/01.wnl.0000068021.13945.7f. PMID: 12796527.

 
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fuzzydog
8 months ago

I would really appreciate if you could give me more information about the Vitamin D manganese connection. My son has had elevated rbc manganese for twelve years. He is now showing symptoms of dystonia after treatment with EDTA. Thank you.

fuzzydog
8 months ago
Reply to  admin

Thank you so much!!! We have DNA testing out through sequencing.com right now. It was $500. He’s 32 so I doubt that he has one of the identified genetic disorders but we thought we should eliminate the possibility. Apparently, manganese is normally high in the plasma for these disorders not the rbc. We lived near a train track for years when he was a child.

fuzzydog
8 months ago
Reply to  admin

Thank you. He does have low iron and we’ve been working on that. We also have done organic acids tests. We should do his stool again since it’s been a while. His doctor is going to be calling Doctor’s Data to discuss what they know about manganese. They just added manganese to their toxic metal stool test at the end of 2020. Since the vast majority of manganese is supposed to be excreted through the stool, the fecal test will give you a good idea if your body is excreting manganese. I found a case study of a young boy with manganese toxicity. They suggested that a manganese toxic person be treated once of a month with a low amount of EDTA gradually increasing as the person becomes less toxic. I know that that isn’t the route you’re using but for others who are reading this thread I hope they don’t make our mistake and go a lot slower. I suggest anyone who suspects manganese toxicity to test hair, urine, stool and blood. In my son, there are only two places where manganese shows up as elevated-his blood and urine after EDTA which is extremely concerning. So glad that you’re doing so much better.