Dear friends, I am forced to seek your help to pay for the treatments for a second relapse of my chronic Lyme disease, contracted while working as a naturalist at Greenwich Audubon, Connecticut in 1998. The CDC (Center for Disease Control) still doesn’t fully recognize chronic Lyme in the United States. This provides the health insurance companies with a reason to not pay for extended treatments. It is virtually impossible to find in-network doctors.
After 7 weeks of IV antibiotics (intravenous ceftriaxone), which used up my savings, I started Gamunex (IVIG) which is a tier 7 drug. I must pay %25 of $25,000 this December. This includes the cost of lab work, medical tests, attending nurse, supplies and doctor visits. Gamunex-C (immunoglobulin therapy – IVIG) is can be used to fix the neurological problems. Three months of Gamunex did wonders in 2010. I tried using an in-network neurologist but he quit on me after being asked to jump through hoops by the insurance company (AARP Medicare Complete), so I went back to the out-of-network neurologist I saw in 2010 for the prescription. I was told by the pharmacy that in 2017 I need to find another in-network doctor in order to continue the Gamunex.
“Until this recent illness my wife was an avid birder and did volunteer work for local conservation groups such as NY autobahn. (we use to do habitat restoration and tree planting) and the NY Linnaean society, where she applies her extensive computer skills in managing and creating their web site. Before her illness she would be up before the sun at her PC doing graphic and editing work. That is when she was not dragging me out of bed and up to Central Park or where ever there was a bird sighting. It is upsetting to see my wife who was once so active and involved in the community, now so debilitated—first by the Lyme virus and then the struggle to get treated by a money driven medical Industry. Twenty-five years ago our son moved to the U.K. where like much of Europe the care of people comes before the profits of insurance companies. Sherry finds it embarrassing to have to turn to this method of trying to get funds to treat her illness. All these financial struggles with doctors and insurers has taken an emotional toll on her almost as debilitating as the disease itself.” Marc (husband)
My symptoms are so severe I have not been able to enjoy or partake in my normal activities. I love to photograph wildlife. I’ve had to give up birdwatching except for one or two very short trips to local parks. It is extremely painful to get up and down stairs and I can only go out for a couple of hours at a time and when I do I have to recuperate for a couple of days after. I spend much of my time sleeping and lying in bed exhausted. I am retired and on a fixed income from Social Security (I can’t work now anyway). I thank my husband for looking after me.
My neurological symptoms include: brain fog; difficulty concentrating; anxiety; depression; memory problems; hot and cold flashes; heart palpitations; urinary problems with sharp pains; numbness and tingling in my hands and feet; shooting nerve pains in feet and legs; severe muscle weakness, stiffness and soreness; and extreme fatigue. Also sinus and throat irritation with mucous; dry mouth and eyes.
My treatments for January are up in the air. My script for Gamunex may cost $20,000 if I can’t find a new in-network doctor. I was told that Medicare has a new ruling: No scripts written by out-of-network doctors will be honored.
Thank you all from the bottom of my heart for your help. Marc and Sherry