The following was written by a dear friend, Yemaya Theresa Von Antropoff. She tells us of her feelings as she goes through this journey called, “Lyme.” I thought it was so touching that we needed to share it in the “Patient’s View” area.
“My kids and I have had a very long battle with Chronic illness, too long..Multi systemic illnesses start out with a Bacteria called Borrelia burgdorferi better known as Lyme Disease. It often comes along with other Bacteria infections such as Bartonella, Babesia, and so many more.
You go so long with being misdiagnosed & not believed by Doctors it eventually becomes Chronic. Your immune system is so beaten down that that opportunistic Viruses start to take over your already war torn body. You have symptoms like Chronic Fatigue/ME, Fibromyalgia, Multiple sclerosis,Cognitive difficulty to name just a few.
Since it is multisystemic it attacks every organ and system in your body. Your Central Nervous System & eventually your Brain. Some like me end up with Chronic Neurological Lyme Disease. You suffer through years of body & nerve pain, seizures, fatigue, and illness upon illness. Then years of your body fighting to survive your own body turns on you and you develop autoimmune issues.
By being misdiagnosed and ignored by the medical system you don’t realize when you become pregnant you pass it onto your children. But they don’t believe that either so as you watch your children suffer with pain and illness. Trying desperately to find help for them. But many are afraid they will call you a Munchhausen Mom. That your children are not really ill & that you are just making them believe they are.
It is hard to find Doctors who treat these diseases. Because mainstream medicine won’t treat because they are afraid to or don’t believe these diseases exist in Chronic form. Insurances don’t pay for them. The Infectious Disease Society of America are threatening, suing, & taking the Licenses of Doctors who do treat patients away .Screwing patients over and by not letting these Diseases be known because they own the patent to the Disease. Just like the AIDS epidemic back in the 80’s.
You are left to find real Lyme Literate Doctors ( there are many quacks out there trying to make a buck off of peoples misery) who Specialize in these disease. Or if you cannot find one near you, you turn to Alternative Practitioners. You are left to have pay out of pocket. Many of us cannot afford to get treatment or travel to find a Doc who does treat. So you refinance your house, max out all your credit cards and in the end you lose everything. House, a normal life, family, friends.
So you research and try to treat yourselves inexpensively with Rife, Herbs, Supplements the best that you can. As paying out of pocket for Doctor Bills is impossible.
Having Invisible Chronic illness is not like having Cancer. When someone has Cancer people rally around them and support them. Throw fundraisers for treatment, cook meals, go shopping for them, help with house work, etc. Because yes Cancer victims can die but so can Lyme victims.
With Lyme there are many who are left to suffer alone. As so many people lose so called family and friends as they don’t believe that you are really sick. Or just don’t want to deal with it as the years drag on, or just don’t care.They either walk out of your lives or you walk away from them. Because you get tired of hearing the whispers of being lazy or crazy and seeing the eye rolls. Or the indifference they show.
I have made many friends here online in the Lyme Community and some not. Some who have become very important to me. I appreciate the emotional support they have given to me. April, Robin, Lynn, Lisa Hilton, Joyce, Betty, Jessica, Mamak, Liz, Dawn, Rhonda, Jeanne, Gary, Bradley, Jen Jenn, Catherine, Pat, Sylvia, Stacey, Peggy. Please forgive if I have forgotten anyone.
I have run online support groups. I have heard many stories. I have many of my own. I am one of the lucky ones as I have a Loving, Kind, husband. He and my children & I are very close we support each other. He works full time to support us and helps me with most of the household chores. We all pitch in. What gets done gets done & what doesn’t doesn’t. But it has been hard over the years as we have basically been on our own.
We have had to do everything ourselves one way or another. Including raising two kids. As we have had very little family support since I got really sick. Very few friends left. Thank you Lilly Kaya, Farah, Nathalie,.I cherish & and I am grateful for those very few. Like I said at least we have had each other.
There are others who end up with nobody.over the years. I have seen so many fellow Lymies lose their lives. Either through complications from the disease or they just can’t take it anymore and their lives are lost at their own hands. One in particular who will always be in my heart, Heather. ♥
If you know or love someone with Invisible Chronic Illnesses. Think about these words that I have written here. Please Support them. This is terrible hand to be dealt. It is no less important then Cancer.” ~ Yemaya