Meet The Patient Part 2 — Case Study on Postural Orthostatic Tachycardia Syndrome (POTS)

By: BioDesign Wellness Center Staff

November 14, 2019 | Category: Case Study

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Editor’s Note: The following blog post appears in our Meet the Patient series — case studies of BioDesign Wellness Center patients have or are currently treating. In some cases, to ensure confidentiality, patient names and other details have been changed or omitted. That said, the specifics you’ll below read about conditions, diagnoses, and treatments are accurate.

Below, we present Part 2 of Abby’s case study on her journey living with Postural Orthostatic Tachycardia Syndrome (POTS). For the first part in this post, please see Meet the Patient: Part 1 — Case Study on Postural Orthostatic Tachycardia Syndrome (POTS).

Part 2 of Abby’s story:

After some unusual lab results, Abby’s mother searched online for a doctor or medical center in Tampa with expertise in her daughter’s condition. That’s when she found us, first through Dr. Matt Lewis’ personal blog, where the first post she saw was about POTS..

After only a few minutes of talking with Dr. Lewis, Abby and her mom were convinced we could help. At their first appointment, Abby was lying on Dr. Lewis’ office floor, unable to sit upright. He asked about adrenals, water damaged buildings (WDBs), and more. Because the family’s home had previously experienced a large window leak several times in its bonus room, what Dr. Lewis said about WDBs and chronic inflammation was like a light bulb going off for Abby and her parents (though her dad took some convincing).

Abby’s diagnosis

Based on Abby’s symptoms and medical history and the fact that the family’s home was water damaged, we suspected that Abby was, in fact, suffering from POTS, but also that her adrenals were involved and that she was likely to be suffering from chronic inflammation response syndrome (CIRS). CIRS is a multi-symptom, multi-system illness caused by biotoxins or neurotoxins from a biological source, such as molds in WDBs, tick-borne illnesses such as Lyme disease, cyanobacteria, dinoflagellates such as those responsible for red tide, Pfiesteria, and poisonous spiders such as the Brown Recluse.

Initially, we recommended Abby immediately eliminate sugar, caffeine, carbs, vegetables that grow below ground (such as potatoes), and bananas. Within a few days, Abby was feeling remarkably better, as she reports in her own words:

What a huge difference this made in just a few days! I was able to celebrate my birthday on the Monday after our first meeting that previous Friday night.

We ordered numerous tests to help us identify and address the root cause of all of Abby’s ailments and put her on the path to recovery. Abby was like many patients who seek treatment for  chronic health concerns that have not been resolved with conventional methods. What she needed more than anything was for someone to take a more integrative approach, sorting out the actual cause of her conditions.

The results from the CIRS tests showed us that Abby was experiencing a high level of inflammation, which conventional testing had failed to show. Abby’s home was tested for toxic mold, and the score was off the charts. Test results also showed Abby has two genetic markers that make her unable to detox properly. Living in a toxic environment without the ability to sufficiently detox allowed biotoxins and other toxins to build up to dangerous levels in Abby’s body.

The test results provided hope to Abby and her family. The next steps were to eliminate exposure to the mold and other toxins resulting from the water damage and to get Abby on binders to help her body detox. We recommended that Abby live elsewhere for a time, but she chose to remain in the home as her family worked on remediating the water damage. Air vents were checked and sealed, the damaged window and wall were replaced, the house was cleaned from top to bottom multiple times, and furniture was removed and replaced.

Prior to and during detoxing, we worked with Abby to build her resilience. Binding toxins out of the system is a critical step in treatment, but after years of exposure and exhaustion, there is a certain level of depletion and damage that changes how the body regulates itself. To help Abby build her resilience, we provided her with very specific supplements and lifestyle changes, so that she could tolerate the treatment and start to feel better.

Taking binders can actually cause toxins to be released and it’s a slow and gradual process. We experienced some setbacks when things started to go too fast for Abby’s body to keep up. Building resilience was a key factor in getting her well.

Abby’s treatment protocol

To restore Abby’s health, we recommended a treatment plan that included the following:

  • Avoiding water-damaged buildings, including the local YMCA, where she often swam.
  • A strict diet, eliminating sugar, caffeine, and carbs, including starchy vegetables and sugary fruits.
  • Increased periods of rest to facilitate the detox process and help the body heal.
  • Binders to help Abby’s body detox, including Cholestyramine (CSM), GI Detox, and okra. Abby was unable to tolerate CSM for long periods of time, but she continues to take GI Detox and consume okra.
  • N-acetyl cysteine (NAC) to replenish glutathione — the most powerful antioxidant in the body.
  • Adaptocrine and Adrenacalm for adrenal support.
  • Gabatone to support the biosynthesis and metabolic degradation of GABA — a key inhibitory neurotransmitter that calms the central nervous system.
  • Magnesium and potassium to help restore Abby’s electrolytes and support healthy heart function.
  • Medicated nasal spray to control bacterial and fungal growth within Abby’s nasal passages that could be causing or contributing to her allergy symptoms. (Note: We commonly use this nasal spray to eliminate Multiple Antibiotic Resistant Coagulase Negative Staphylococci (MARCoNS). Although Abby tested negative for MARCoNS, this nasal spray helped to reduce Abby’s nasal inflammation significantly.)
  • Vasoactive Intestinal Peptide (VIP) to treat mold illness. Abby is sensitive to VIP (it makes her dizzy), so she takes it on and off as she can tolerate.

We worked closely with Abby to enable her to continue swimming because it is such an important part of her life. She wasn’t always able to make it through every practice and had an ambulance called in once, but she was able to continue practicing and competing through her senior year.

We continue to monitor Abby’s health and order follow-up tests to track her progress. Recently, she was given a stress echocardiogram, which she passed with flying colors. We also conducted visual contrast sensitive (VCS) testing to gauge the impact of neurotoxins, biotoxins, and nutritional deficiencies on Abby’s neurological function. She took VCS tests until she finally passed, indicating that the levels of toxins were under control.

Abby’s treatment outcome

Abby is starting to feel much better and has returned to many of the activities that contributed to her quality of life. In Abby’s own words:

I feel a huge improvement! I can function again like a somewhat normal 19-year-old. I am currently living in Charlotte, N.C., attending Johnson and Wales University Baking & Pastry Arts program — something that just over a year ago I never thought possible. My blood pressure readings are normal, no racing heart, few flares if any. I am now trying to overcome some anxiety related to being ill for so long, but with my move, that seems to be improving since I no longer relate certain places to my illness.

Abby continues to take Midodrine but is hoping to eliminate it soon. She no longer needs the beta blocker and has decreased her supplements to magnesium, daily vitamins, and salt and Adaptocrine as needed. She continues to take detox supplements two or three times daily — GI detox at night and okra during the day — and she is careful to stay hydrated. She maintains a strict diet, and although she has a higher tolerance for gluten, she has decided to keep it out of her diet.

Throughout treatment, Abby has remained as dedicated to her treatment protocol as possible. In her words:

Consistency is not my strength, but I am better with this treatment considering all of my distractions with traveling and hosting many out-of-town guests. I have had a difficult time adhering to the daily schedule and taking some supplements two hours away from medications or an hour before or after a meal or on an empty stomach. There have been periods that I didn’t do well at all, but I always have gotten myself back on track. I also at times will create a flow chart to help me manage.

For a teenage girl who is swimming at a high level, working, and studying, this is not easy. We give Abby a lot of credit — she is her own healer. Yes, we helped Abby by providing the treatment steps, support, and guidance along the way. But really, she is the champion!

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Disclaimer: The information in this blog post about a person living with POTS (postural orthostatic tachycardia syndrome) is provided for general informational purposes only and may not reflect current medical thinking or practices. No information contained in this post should be construed as medical advice from the medical staff at BioDesign Wellness Center, Inc., nor is this post intended to be a substitute for medical counsel on any subject matter. No reader of this post should act or refrain from acting on the basis of any information included in, or accessible through, this post without seeking the appropriate medical advice on the particular facts and circumstances at issue from a licensed medical professional in the recipient’s state, country or other appropriate licensing jurisdiction.

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