My Sophie’s Choice of Lyme Disease Treatments

I am scared. My neurological Lyme Disease symptoms are worsening just a week before my 64th birthday. My back pain is scary because it is completely disabling. I was in a recliner chair all summer after I went to ER by ambulance in JULY 2015. So I wake up early on Thursday October 20, 2022 and plan on going to the West Roxbury VA ER and demand treatment. I demand it! You god-damned incompetent fools.

On the way to Boston I get a text from a VA nurse named Lisa and she is helping me to get outside Lyme Neurological treatment after 3 previous ER visits. But the appointment is months away. I know showing up very ill will not be enough to get the ignorant VA doctors to competently treat me today. But Lisa assures me they will. She tells me to tell them I am in pain from head to toe as I had told her. I tell her I am so sick from never ending pain; my physical and neurological pain is worsening. I cryed all day every day this summer just from pain. When I got antibiotics in August the crying stopped and I was all smiles. I tell them it helped but they will not give me anymore antibiotics after the initial dose. But in October I know I’ll soon be unable to get into bed. I do not want to be this sick anymore.

I tell her I think of suicide. I cannot believe it has come to that. That I have to say that to get their attention and arise any competence (I am hoping). They would have me kill myself before they treat me. I call Lisa and she assures me she will help. I tell her I will jump off the fucking building this time if they do not help me. I demand it. She asks “Do I have a plan?” Of course I have no plan – but after I state my demand I then get the question again – so I tell them I will come up with a plan. I tell her I will jump off the Causewat Street VA building and splat myself on the sidewalk. But first I would call Gayle Cahoon to look out the window. I am in that much pain to say that. Physical pain so severe I would rather be dead than to take that pain any longer.

Gayle Cahoon is responsible for much of my demise from her denial and delay of any treatment. Even though I was in her office for my appointment just 2 weeks after a new deer tick bite. I was crying (with tears) in pain in her office. I am immuno-deficient, have chronic lyme and was bitten 2 weeks before the visit. She said “Ahh My K it is okay’, and then did NOTHING. Five weeks later I am in an ambulance with the worst pain of my life. I have metal implants in my spine for painful injuries so I KNOW PAIN and I can take PAIN. 10 years of neck pain from a crushed and desiccated disc. But the implant was not a good choice. The VA placed a ball bearing in my spine; a metal implant that was an experimental surgery. The Dr really sold me the procedure, but it too was a mistake. Almost everything from the VA was a mistake. The Lyme would later attack this implant and cause awful neurological pain.

I so sick and scared. This pain is 4-5 times worse than the crushed disc. That means it is off the map. The most pain of my life and it is only on the right side. No left sided pain. Severe right sided pain from head to toe. I’ve been seeking help from the VA for 3 years but my Primary Care Doctor (Gayle, an NP) outright refuses to help. Gayle’s most common answer to my needed medical care is that “the VA can’t do that”. Without ever checking or trying. Now my endocrine system is injured, and I’m scared I will die of that. So I decide I will fight for treatment.

I arrive at the VA W Roxbury ER and tell them I am so sick from delayed and denied competent treatment, treatments that other sick people receive; I read their stories online and then they recover. My story is of the VA delay and denial of medical help.

And that brings me to my Sophie’s choice. After sitting the ER all day in pain, The Psychiatrist says she wants to hospitalize me for my mind illness. They refuse to admit and treat my right sided pain and numbness. A neurologist (resident) and an infectious disease doctor decide I do not need any Lyme Disease treatment. But Dr Wu tells me she will not write the prescription unless I agree to sign a document that I need mental health care. My truest problems are in my mind! So I agree and it’s like jail for me.