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
Sherry Felix - port4u 
I’m so sorry to read this, Sherry. I hope you can find funding.
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If you click on the link you can see I almost did – about 75%. That was for December. I should continue, but can’t afford to. The treatments helped a lot.
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Sherry I wish you all the best in your battle with the health care system and this awful disease! Blessings!!
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Reblogged this on Midwestern Plants and commented:
Sherry is a wonderful artist and photographer. We’ve been following each other for a while now. I’m so glad she’s reading my posts and catching photo mistakes and my bird ID blunders! 😉
Sadly, while enjoying the outdoors, she contracted chronic Lymes disease. Even worse, her insurance doesn’t recognize the disease as a disease and won’t pay for her treatment! This is ridiculous!
Please help a wonderful, fellow blogger pay for her December treatment and hope her new 2017 insurance has some sense of humanity, and covers her treatments! Thank you!
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Thanks for the repost. It is the CDC (Center for Disease Control) that doesn’t acknowledge chronic Lyme, resulting in Insurance companies not paying. For the second part of my treatment I am being treated for the neurological problems, so it isn’t called Lyme. This affects everyone with long-term Lyme. Unfortunately, Medicare has a new ruling starting in 2017 not allowing prescriptions from any out-of-network doctor which means I have to find an new doctor. I tried an in-network one yesterday – no good – he doesn’t understand the disease or my treatments. If I have to pay out of pocket treatments for January will cost $20,000.
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That’s just a big pile of BS!! >:-|
I get how hard it is to find a Dr that understands non-common issues. I have Hidradenitis Suppurativa, while not a deadly issue, its pretty much a pain in my kester. I had to tell my doctor what it was after she didn’t know and I went home and researched it. I went to a dermatologist and she wouldn’t even touch me… I’m not a leper! These skin Dr’s only want botox clients, not anyone with a true, medical condition.
Dare I suggest cheating the system…. Is there any other condition that uses the same treatment you’d get for the neurological problems, that IS covered by insurance? I’d wonder if its all in the ‘medical coding’. IE they will cover code 101 and not 102… I would then say I have issue 101 and not 102. Yes, I’m saying to lie.
If it came down to my life, I’d lie like a rug.
Sorry to be that way. It just really frustrates me.
Have you tried to get charity from the treatment center, or the drug company that supplies the treatment drugs? I’ve had luck through hospitals on their bills. Sometimes getting over 2/3rds off.
I really, really hope you can get a doctor that gets it before January.
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Thanks. I am rolling stones and turning over logs. Will try everything.
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I just don’t get insurance companies. Do they not accept you are sick? Who cares what caused it, insurance needs to cover it, period! Gesh.
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That would be just. It would also be nice if doctors upheld the hippocratic oath.
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Thank you, Sherry! She has severe dystonia, requiring frequent botox muscle injections, plus a bad skin disorder due to the penicillamine that she used to be on for the Wilson’s, bad arthritis, and eats through a stomach tube, but she is doing rather well considering.
Never blame God (i.e., the sacred); that immensity has nothing to do with it.
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I pray that her healthcare is covering the expenses. Unfortunately, mine is not.
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I feel for you! My wife has severe Wilson’s Disease… and we have more than our share of problems too.
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Thank you. Sorry to hear of your wife’s problems. I looked up Wilson’s disease.
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