HELP GREG HEAL

Hi!

My name is Greg Hagerman. My good friend Jennifer Wysocki urged me to start this campain.

SUMMARY

 I've been battling severe health issues since I was 26 (in 1998).  I have a white blood cell syndrome that causes stomach, sinus and central nervous system issues. There are two major autoimmune markers suggestive of Lupusn. I have low Gamma Globulin levels that make me immunocompromised and suffer from neurotixicity from two antibiotics in the same class taken in 1998 and 2003(Cipro & Levaquin).  This has caused extreme treatment depression making life increasingly difficult.

MY STORY

In 1997 at 25, lower stomach trouble initally misdiagnosed as a bowel disease later revealed to be an allergic condition. Early theories if mono or CFS would be dismissed after 2 yrars.

The following year I had an onset of neurological symptoms that made me feel extremely dazed, detached. I was seeing stars, was weak, cognitive and memory issues. It also left my skin partially numb. These symptoms improved in sync over a 9 month period with only a 50 percent recivery.

Eventually, abnormal blood markers, biopsies shoed some abnormalities.  I have a white blood cell (eosiniphil) disorder which is neurotoxic to my body.

I have a consistently high eosinophil count and are found in my stomach biopsies. These cells often do more damage than good.

2001

Tests for autoimmune activity showed positive for ANA (antinuclear antibody and (Anti-dsDNA), often associated with Lupus. 

2003

After septum surgery I got frequent sinus infections. Allergy medicines were not effective. Weeks later , I got infected with a bacteria indicating my immune system is compromised.

Testing shows deficient IgG levels (Gamma Globulin).

This explained the frequent infections. The Dr. said Gamma Globulin infusions were hard to get and reserved for the military. My sinus issues remain severe and  have led to three more surgeries.

The chronic sinusitis, allergy-driven stomach problems and neurological symptoms turned out to be linked.

I bought a book on Eosinophils. I ran across a disease called Churg-Strauss Syndrome. This seemed to explain all my symptoms, the neurological, gastrointestinal and sinus. It’s rare and often hard to diagnose. Eosinophil below:

Some doctors think Churg-Strauss is plausible, given the evidence. A doctor at the Cleveland Clinic in 2016 didn't think I had Churg-Strauss, but definitely have an eosinophilic syndrome.

There is no cure. Steroids help some but  can be harmful. There were no anti-eosinophilic medications on the market, but there would be later!

All this took a harder toll as the years went by just living life trying to endure symptoms which affects my ability to do a lot of things and enjoy life.

Fluuoroquinolone antibiotics

I took in 1998 and 2003 had toxic effects. Levaquin, in 2003, made me extremely nervous, and I could only sleep 2-3 hours per night and had a permanent effect. This required strong medicines to control depression and anxiety. The FDA in 2013 determined these drugs cause anxiety issues, central nervous system and peripheral nervous system problems in some people. FDA warning label is below.

The eosinophilia, my compromised immune system, and the damage from the two antibiotics paint a picture of my condition.

2018

I had a sudden onset of severe insomnia. There has been little success in fixing this.  Frequently I stay awake all night or wake up adter only a few hours of sleep.

My symptoms and inability to get decent rest is why I have severe anxiety and depression, bordering on anhedonia. It's considered treatment resistant. This and the central nervous system problems affect what kind/level work I can do. 

For 3+ months, I've had a sinus infection.  Despite multiple antibiotics, including two weeks of antibiotic IV infusion. I'm taking another now, but it’s not working well.

But there is encoraging news!

New drugs have come out for eosinophilia. My ENT prescribed Nucala, a once-monthly injectable. I did my first self injection recently and should expect results in a few months.

My doctor wants me on Gamma Globulin infusions. Currently, it's available. Insurance may or may not approve it, yet I'm cautiously optimistic to see if Nucala helps. When I get approved for Gamma Globulin, I hope the two meds are effective.

This journey has been expensive. I have lived paycheck to paycheck most of my life but being underemployed, paying COBRA premiums with a large deductible, this is something I cannot bear. Previously when I was making more money, it was more feasible to take on the debt and pay it off over time.

This journey has led to despair, feeling hopeless and generally crushed. But I am hopeful new treatments will lead to healing and some happiness. Please consider donating. It would mean a lot to me and make a big impact to help me make ends meet and get the treatment I need.

Feel free to contact me. I am open and transparent how it affects my everyday life and ability to work. 

Thanks,

Greg