How Swine Flu Changed My Life Forever

Basic Stuff

• Name: Corey
• Country: United States
• State: Wisconsin
• City: West Bend
• Gender: Male
• Age: 40
• Education: Four Year Degree
• Primary Illness: Dysautonomia/postural orthostatic tachycardia syndrome (POTS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Fibromyalgia (FM)
  • Postural Orthostatic Tachcycardia Syndrome (POTS)
  • Irritable bowel syndrome
  • Small intestinal bowel overgrowth
  • Migraine
  • Mast Cell Activation Syndrome (MCAS)
  • Autoimmune Autonomic Neuropathy, Autoimmune Small Fiber Neuropathy, Chronically Elevated Tryptase
• Year Illness Began: 2010

Functioning Interrupted

Most Impactful Loss

I have lost the ability to do many things that I love, or doing them is very stressful and causes repercussions to my health. This impairs activities on subsequent days. I also exist in a constant state of pain and fatigue. Normalcy of life itself is lost.

My Story

I came down with the Swine Flu and never recovered. It set off an inflammatory cascade in my body which has existed to the present day, causing Dysautonomia (rapid heart rate, adrenaline dumps, brain fog, neuropathy, chronic pain, migraines, dysfunctional gastric motility and digestion, excessive sweating, fatigue, and post-exertional malaise, to name just some of my symptoms. I went from an Electrical Engineer (Top of the class in the quarter I graduated) at the beginning of a promising career, to being severely disabled almost overnight. Chronic daily migraines forced me to take a leave of absence from which I never returned. Prior to the infection, I would repair vehicles, built a huge patio, worked my job, and worked on setting up and moving into a new house. Afterward, basic chores like yard work, house work, cooking, cleaning, etc. became incredibly difficult. One could compare doing them to running a marathon for a chronic illness patient like myself. I also collected other diagnoses of ME/CFS, Fibromyalgia, Small Fiber Neuropathy, Mast Cell Activation Syndrome with chronically elevated Tryptase (negative for Hereditary Alpha Tryptasemia).

Since that time I have made a huge number of accomplishments, both for advocacy, and to improve my quality of life. This is a momentous uphill battle, and while I am considerably better off, I am still disabled and continue to advocate for more research and better scientifically indicated medical care.

I became a founding member of Racing Hearts Day in 2017 - an organization which raises awareness and funding for Dysautonomia research. We started a local patient support group that continues to this day in Southeast Wisconsin. I followed cutting edge research, and helped advocate for testing for myself and other patients for autoantibodies. This advocacy resulted in myself and other patients being given IVIg (Intravenous Immunoglobulin) which makes a significant improvement in quality of life and reduction of disability.

In 2019, I decided to raise awareness further by being featured in two news articles, one of which went viral and hit the USA Today front page as well as being featured on Apple News Top Stories:

https://www.usatoday.com/story/news/health/2019/11/19/dysautonomia-leaves-millions-undiagnosed-barely-functioning/4237075002/

https://folks.pillpack.com/chronic-illness-shouldnt-mean-chronic-poverty/

In addition to this, I have been engaged in a Battle Royale against the Social Security Administration. I initially applied back around 2012 - my application was denied without any notice being sent to me. I reapplied, and was denied all the way up the chain of command, which culminated in me filing a lawsuit against the Commissioner of Social Security. Over 40 pages of briefing finally was vindicated when the US Attorneys stated they agreed with most of what I had written, and the Administrative Law Judge's decision was patently wrong and indefensible. A second hearing after Voluntary Remand resulted in an award of benefits, but with mistakes about the onset date and with an inappropriate review period, and the ALJ playing doctor. My appeal resulted in a third hearing, where the same ALJ wrote a decision that went about face on his original due to retaliation. The Appeals Council now has 75 pages of briefing before them to end this embarrassing failure in their duty and Kafkaesque nightmare of legal filings. They have completely ignored the evidence, and so a suit has been filed in Federal Court again where I will likely receive an award that overrules the Commissioner's decision. As a Pro Se Plaintiff (self-represented, non lawyer) this shows how embarrassingly poor SSA is at following its own internal procedures and laws. A small segment of cases goes to Federal Court, and maybe 1% of them or less get an award in court due to the inability of SSA to get it right. SSA had non-examining doctors review other records including non-examining doctors, which violates precedent set by the Supreme Court for stacked hearsay. The ALJ also made all of the same mistakes as the first ALJ, so they will not be affirmed.

As a result of all I learned from this process, in Spring of 2023 I helped representing a friend from my support group at her own disability hearing. The ALJ issued a fully favorable award to her date of application.

On top the SSA nonsense, I was placed on Medicare as an SSDI recipient. SSI recipients get Medicaid, which makes a lot more sense. I became a dual eligible (Medicare / Medicaid) and that is another nightmare. My IVIg treatment was interrupted in 2022 for two months, and I fully relapsed to my prior state. It took me a year, once treatment was restarted, to get anywhere back to where I had been after 3 years of successful treatment. I lost home care, despite being homebound due to Medicare’s Demonstration Program being discriminatory against individuals with rare illnesses. After a number of months, in December 2022 I found a home care agency to use my Part D coverage. This was terminated in June 2023 when authorization time came up. I was told I needed to regain Part D coverage to get home care since I don’t have immunodeficiency. Those patients are less disabled than I am, so this law is likely unconstitutional. At present, I have returned to the clinic for close to a year. Due to the ridiculous way that Medicare and admitting privileges work, I was threatened with another lapse and had to make two visits to the Emergency Department, where IVIg isn't even normally administered.

My HHS ALJ hearing resulted in an expected denial, which was affirmed by the Appeals Council.
I presently have a (second) case pending in Federal Court. The 55 pages submitted before the ALJ, along with the 15 supplemental pages after the Part D plan doctor falsified my records and made untrue statements about my treatment history, will finally see the light of day. Given HHS/CMS policy I am trapped in a nightmare that I intend to fix. In the fall, I submitted a complaint to the Office of the Inspector General for HHS, and was contacted in April by an Investigator for the Office for Civil Rights - they are investigating my complaints independent of my Federal Court action, which is currently on a stay. The doctor who lied during the hearing has been reported to their state's licensing agency.

In the fall, I also started a trial of Xolair for whichever of MCAS or Mastocytosis that I have. It has been highly successful and moved the needle on my quality of life from IVIg alone. Oddly, however, my Tryptase has increased since treatment (in opposition to the evidence in the medical literature). I have been recently made aware that there is a small contingent of patients like myself with a negative bone marrow biopsy, negative test for Hereditary Alpha Tryptasemia, and elevated Tryptase - I am likely to be enrolled in clinical research to test genetics and see if I have one of the 8 variants they have identified. This knowledge may lead to changes in my treatment and wellness outcomes.

Additionally, this spring I also received an ADHD diagnosis, and adding stimulant medication has moved the needle on cognitive and executive function, and has had some very unintended effects such as reduction in sweating and improvement of GI function. Research has shown that impacting Dopamine could have far reaching effects on the immune system, as well as general wellness.

With this saga continuing, Patients need to mobilize and show support for the PROTECT Rare Act. It would allow the use of journal evidence instead of dated and discriminatory compendia. It would net us all access to off-label medications that are necessary to ensure equal control of disease processes and improvements in quality of life, regardless of diagnosis code.

https://www.change.org/p/pass-the-protect-rare-act-of-2023