Lyme Disease: Stories From the Front Lines of An Epidemic – Steve

This was written in May of this year (2016) as a late addition to the book I was still pretending to write.

Like many people with Lyme, Steve developed first leaky gut syndrome, and then the cataclysmic allergies that tend to go with that. It’s partially the disease and partially the heavy load of oral antibiotics which tend to be all that the really poor among us can afford.

I actually suffer from a slightly milder form of the Lyme allergies that Steve complains of but a job, safe housing, and a few more food choices and about 8 years separate us. Maybe that is why while I sometimes become angry or depressed I don’t seem to feel Steve’s need to share that anger with the world.

And fair warning here, Steve is angry. But you should still read this through. I think that you will find that he has every right to be.

And now, here is Steve:::

So, May is Lyme Disease Awareness Month….and I am writing this on behalf not just of myself but of the hundreds of thousands of us with Lyme Disease and it’s many co-infections and ailments. We range in age from 4- 84, we cover all colors and many nations. We are mostly poor, and mostly uninsured, but even of those of us who are rich share in the primary problem.

WE CANNOT GET HEALTH CARE.

No insurance company, no government aid, no doctor plan covers treatment for Lyme Disease. We have to pay for ALL of our treatment out of pocket, and those that cannot pay face crippling, painful lives, severe neurological illnesses, severe allergies and chemical sensitivities, depression, and death.

And Lyme doctors are hounded out of town, persecuted, and frequently charged with malpractice. So they cannot carry their own insurance at best and cannot practice at all at worst.

So there are no real long-term care options.

Some of us die from Lyme, some from the co-infections, and some give up and commit suicide rather than face this horrible disease.

What are our primary challenges other than poverty, lack of care, not eating, not sleeping, not pooping, continual pain, memory loss, depression, and suicide?

Well, frankly, our biggest challenge is most of the rest of humanity!

Ignorance, intolerance, and an unwillingness to offer any awareness or to make minor concessions.

We are frequently accused of being crazy, lazy, or rude. We are often bullied for being different. We can’t really have social lives because society makes no room for people who cannot be around perfumes or chemicals, who cannot eat the most common restaurant fare, who cannot eat due to allergies or be near a smoker. For people who have to avoid pesticides and eat wholly organic and who have trouble with electromagnetic fields. For people who literally cannot walk from their bed to their desks. For people who have not been outside in years.

AND HUNDREDS OF THOUSANDS OF OTHER PEOPLE WITH LYME ARE IN THE SAME HOLE WITH ME!

Come on, Zika is nothing compared to Lyme, but you’re all afraid of that? Lyme is transmitted by ticks and mosquitos and by having sex, and Lyme kills you nasty and slow.

Because, basically, in this youth, entertainment, and money obsessed culture where fame rules and death is taboo, we simply do not matter. There have been several rallys around the world this month and there is a huge one scheduled to occur in DC, but NOT A ONE of them has made the mainstream media, and almost no one outside the Lyme community is aware of any of this.

WAKE UP, PEOPLE! THIS IS WRONG!

No one would even think about treating a dog this way…or if they did then the law, ASPCA, and/or PETA would be all over them making their lives hell.
And yes, I have experienced all of this first-hand – as well as having collected dozens of stories from other Lymies – just today I had two problems. Both dealing with a lack of tolerance and respect. Both dealing with ignorant people who were PROUD of their ignorance.

One – a group of young (12-14?) year old children were making fun of me in the line at Ingles because I am only in my early thirties and walk slowly with a cane.

As I saw no adult present I took it upon myself to tell them that making fun of the seriously ill is not cool. One went and fetched Mom. Mom then told me that even if I was ill – which she doubted – that was no excuse for me to be rude to her children. Um, yes, okay…and this is a parent???

Item two – I had a woman at Walmart tear into me after I very politely asked her to step back from me…she was within a foot of me and she had also marinated in a very strong perfume which was DANGEROUS to me as someone with very very severe allergies.

I had explained my allergies to her when I made the request and instead of backing up she got very angry and got closer and shouted at me that people had rights in this country (apparently including the right to swim in perfume and be an ass) and demanded to know what was wrong with me. Why was I so rude?

So I spent the next thirty minutes covered in hives, upset, and waiting to see if the reaction was going to get worse and I’d have to go to the ER. I got lucky and the reaction faded after two showers and a lot of prayer. And people wonder why I don’t dare go out anymore.

On Saturday, there will be a meeting of a group I belong to – a photographer’s group – but I in all probability will not be able to go.

The meeting is being held in a restaurant where I will be unable to eat and where the table surfaces and chairs will present contact allergy issues. Where people will smoke outside and be wearing strong perfumes inside. I will not be able to afford to buy any food as I spent over three thousand dollars this month – $500 per doctor.

Even if I could afford it, there are only 18 foods I can eat and they all have to be pure, organic, and unseasoned. Almost no restaurant can guarantee any one of those much less all three.

And when you add that my food cannot be cooked on a grill, placed in an oven or touch a plate where ANY other food has been, then that really is impossible.

I will also be exhausted and in pain from the Lyme and seriously depressed because of all my other issues…

Yes, I am still sick. That is what “chronic” means, and yes, I am going to die…either of Lyme, anaphylaxis, or starvation.

My food allergies are still insanely acute, and I am also allergic to dust, mold, pet dander, most chemicals, most vitamins, and most herbs.

My relationship is falling apart after ten wonderful years.

I cannot enter my own home, I can’t pet my cats or visit friends with cats or dogs. I can’t use soap in the shower, wash my clothes, or brush my teeth. I can’t kiss my boyfriend or hug him unless he is literally right out of the shower. I can’t shake hands. I can’t enter a barber’s shop, dry cleaners, or any place that uses or sells perfumes or chemicals.

I cannot enter a restaurant, a coffee shop or a bar. I have to wear a mask to public events because of perfume and cigarette smoke. I can’t mow my lawn. I can’t wear deodorant so I smell all the time despite showering three times a day.

I have to use my own dishware, cookware, and silverware. I cannot share with anyone.

I am allergic to most antihistamines and most medicines because it is legal to cut them with known allergens and even dangerous chemicals in this country and because I cannot afford the guaranteed pure compounded substances.

I am still losing weight, a total of 46 pounds off of what was a 5 foot 4, 148 lb frame. My skin is blotchy, I smell weird, and my hair is falling out.

People avoid me or think me rude in public situations. People call me “weirdo” or “freak” and all because I have a disease this very messed up culture is not aware of, doctors ignore or refuse to treat, and insurance companies flat out deny exists.

And again – this is a disease that affects HUNDREDS OF THOUSANDS of people like me (all seriously ill, many in danger of death, often continually in pain or developing serious neurological issues), ranging in age from 4-84 who could also all be treated for within as little as six months if proper care is given .

And, darn it, the care is actually, medically speaking, pretty simple. It would be called “basic care” for anyone with any other life threatening disease.

Here is all I need. A nurse to monitor me at meals and when I take any allergy meds (which can cause a reaction!) for the first month odd. The ability to actually pay for the food allergy tests (at $36 a food) and all the other tests to see what is causing my issues (ranging from $350-$6,700 a test).

Ideally, access to an advocate who knows the ropes, knows I are not insane, and can help me get a ride to the store, or get my air ducts cleaned, or find someone who will sit with me so I can eat safely and without the terror of doing it alone and hoping nothing bad happens and KNOWING that there is a chance you might die with every bite. Try that for food satisfaction.

Then there are the other things…the very basics of Lyme care – an ability to get mild regular exercise, access to IV antibiotics, access to an infrared sauna, access to IV vitamins and minerals for as long as it takes the system to stabilize (longest estimate I’ve heard was three years, shortest was six weeks). Access to organic foods as commercial ones are more likely to trigger allergies or illnesses due to pesticides and chemicals. Access to hypoallergenic soaps, toothpaste.

It would also help if one could find a job where one could telecommute and no one would comment on your appearance, extreme fatigue levels, furry headedness, and/or body odor.

You know how much of this I am currently doing? Or how many of the other fifty-odd recommended items? Specialists, tests, foods?

None. Nada. Zero. Zip. I literally cannot afford what very little care I am currently getting.

I am so far down the financial hole that Everest alpiners would give up any idea of climbing out.

I am in debt to family, friends, and the government, not to mention all the doctors who charged me either to tell me I was crazy or stupid, or very very sick and who all made me PAY UP FRONT because I am uninsured.

I am living – if you can call this living – off my beloved partner who I truly love and that is WAY BEYOND wrong.

I frequently get angry but there is no one I can attack, frequently get depressed but can find no comfort (and NO, I can’t afford a shrink), and have to fight just to get up every morning.

Worse, I have no recourse for helping myself, no social worker, or doctor who will stand up for me, no job as I am too ill to work, and my latest home industries have been shot down in their infancy because of rising service fees and rising costs.

I am not rich, or famous, or insured.

I am just a 32-year-old guy struggling along below the poverty line and dying by inches because I can’t get any help.

And I am also just one of many!

P.S. Please please please pass this one – you have my full permission…I have reached a point where I do not really care about myself but as noted there are so very many other than me…some very young, some very old, many very talented and all being wasted by this society as it stands!

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