Lyme Files: The First Doctors

When you have Lyme or any of those "invisible" illness which a doctor cannot figure out - it is most common for the doctor to give up or blame the patient. Especially if you have seen "too many" doctors. I have heard people strongly defending their doctors when I mention this, "Not MY doctor."

Then they request the tests or asked the questions and are shocked. I have only ever found one doctor who listened to me. And my rating scales includes more than staring at me while I talked - it includes remembering, replying and explaining for however long it takes.

My father worked for a pharmaceutical company and had made friends with some of the doctors. One day at lunch, he brought up how I was struggling and each of the doctors suggested Lyme. I had already been tested for Lyme with the ELISA.

They suggested I get the Western Blot.

When I returned to my primary family doctor, I told her the story and how I would like the Western Blot. She said, "I will not test you with the Western Blot. It is not necessary, your ELISA is negative for Lyme."

And just like that - I didn't have Lyme. I could not have Lyme. Lyme was not impossible for me to have.

You can check out more details about the issue of testing in my post called Lyme Files: I Never Knew Anyone With Lyme

Spoiler Alert: I had Lyme & Reflections
I later had a Western Blot and it showed intense positives across the board. I always wondered if my story would have been different if this doctor would have tested me. I can't even tell you how disgusted and angry I was mulling over this thought. There is so much contempt and rage that when I went back (twice since 2007) to the Medical Group at Marple Commons I could neither speak about the feeling of betrayal and mistrust in these professionals. I hated how they walked with these clean, cool steps, corners of their lab coats flicking behind them. How they went home to families, ate food, took vacations and had joy while their ignorance made the entire world fall out from under my feet and cost me everything.

It's been a long, long time. I still harbor all those feelings. Those feelings never, ever go away. When I went back more recently because my liver was enlarged because I could get an appointment to get it checked out the doctor said, "Why haven't we seen you in so long?"

I. Could. Not. Speak.

So, it's been a long time.

Honestly - I do not believe if Dr. Walker had preformed the Western Blot anything would have been different. If anything, it could have been worse because I would have only gotten a few days of antibiotics and probably would have never found a doctor who could treat me. I know this, because many years later, my father went to this group and had a positive test - he was given one pill of antibiotic. I made him go to my Lyme Literate Doctor (LLD) where he got a full three months of antibiotics, had a tick found on him by the doctor and also had Bartonella.

Though I'm still very angry at being denied the test.

Doctors are rarely informed about blood-borne illnesses and they are never an advocate for patients. This is the stance you always have to take, and hope maybe there is a good doctor out there. Overall, doctor's follow Centers for Disease Control and Prevention (CDC) guidelines to avoid being sued by insurance companies. A doctor who goes against the CDC will lose everything if found out. Going against the CDC can result in jeopardy to their practice- and few doctors will do that to save a life.

If the doctor follows the guidelines, there was nothing the doctor did wrong regardless of the state or later life/death of a patient.

Check out this article Many Doctors Reluctant To Speak Publicly About Lyme Disease for more information.

Anyhow, if there was ever a "I thought we were friends" situation, it was then.

Why would a doctor prevent me from getting a simple blood test. I relented that I wanted it and that my Dad would be mad if I didn't get it. She drew my blood and ordered another ELISA. I had never known or thought doctors would outwardly lie. She did. Then she told me to go see other doctors.

The Chiropractor
Alternative medicine is full of quacks, scammers - and actually the most knowledgeable, understanding and caring people I have ever met. People who research tireless, write papers, talk to others and share resources and information. Maybe you are selling me snake oil, but, you show me the research, you talk about my issues and you suggest it.

And by snake oil, I mean Shakeology (Rim shot).

I had a couple sessions with this guy - and I can't remember his name. He was a bigger guy who loved his job and had a big  beard. He told me to give him a chance, three sessions.

I wanted to believe it worked because my friends always say how much pain they are in and they go to a chrio and feel so much better.

Nothing changed for me. If anything, I felt worse because of the effort. At best, I felt the same.

He asked me how I was and I said I was fine, he said "you lie like a rug."

He told me he wasn't going to waste my time or money on stuff that doesn't work. But, if I needed helping find someone who could help or anything, he would do everything he could to find it.

I wonder what would have happened if I wasn't so dumb and foggy and out of it and fighting to keep everyone believing I was ok and told him I needed help.

To Rheumatology

And just like that - I went from possibly have an infection to merely have a disorder of my muscles and joints. From this point on, no mainstream doctor would ever test me for an infection. I was tested once and that was all that was required.

Understand, for all Lymies , at this point, if no other disorder can be found, it is a mental condition. This is why we are told to go home and get over it. Spoiler alert: I'm still alive and I'll get into what was "in my head" in later posts!

When each and every patient with a tick-borne infection (or probably countless others) crosses to this stage of their story, there are only two directions:

• Saving grace of a doctor who flies under the CDC radar - aka, an LDD
• Slow death. 

This is the beginning of the fast track to death. Before that death, it will take away the ability to walk, think, speak and breath. The body will systematically shut down while often, you don't look sick. Friend vanish, families are destroyed, bank accounts are drained (no treatment is covered). And then you die and even in death, you will never have died of a tick-born illness, because no one can die of that. You die of heart failure or stroke.

I am not even playin' - when you get so sick you know you will die, you want your god-damn sickness to be on that government issued death certificate. But, the government already had guidelines that you couldn't have Lyme, for example, and you certainly can't die of something you don't have.

Ok, back to the story of my life.

I went to two rheumatologist. They were rated very highly in all the books and stuff. Five stars!

I have to give them a bit of credit and offer a warning - when you see specialists, they do not understand anything outside their specialty. That's a good thing if you have a specific problem they are trained on, it is a bad thing if you have a specific problem that they wouldn't know about. They will try to fit you into their known box of problems.

Guess what club anyone with a raging tick-borne illness is in for a rheumatologist? Eep.

This first one I went to, Dr, Thomas Whalen. He order X-rays of my spine and neck. I remember how painful it was to stand with the lead vest on while the thing worked.

URG. SO PAINFUL. I couldn't function for about two days after. It's like I couldn't take off the lead vest and I had a huge-bad case of the dumb from the effort.

Anyhow, he looked over the first page of my file and circled the "nothing wrong" summery and said, "Your tests are fine."

Then he looked at me with a once-over of suspicion and contempt, as if I was wasting his time. "You're pretty. Do you think you just want attention?"

I had no voice to reply, only shame and disbelief. It wasn't bad enough my life and body was decaying around me, the person I was seeking help from thought I was faking it.

In later years, I wanted to believe I said, "If I wanted attention I would take off my clothes, no fake sick, ass." Then demand my money back from the appointment because he was pointless. Keep in mind, I was paying everything out of pocket because I had no health insurance.

It also stung because my family often told me maybe I was just getting old. Maybe I just needed to go to the gym more. The hints of being lazy, being wussy. . .they were there. I was told, "Wait until you get old!"

I actually, in my sick, desperate mind, wondered if I was so crazy I didn't know it, and I was doing this for attention. Then I replied to myself saying I was the kind of person who would have a lot of sex for attention because sick people are icky.

The second rheumatoligist I went to was Dr. Pierre Minerva. He IS a good doctor. He was a specialist and I was not in the box of what he knew.

He did all the same tests and even called Dr. Whalen. I'm sure Whalen said I was a pretty girl with money wanting attention. Minerva didn't let that stop him. I didn't have insurance so he charged me on a sliding scale and gave me samples of painkillers, anti-seizure medication and antidepressants. He and I agreed to hold off on expensive tests in favor of a medication band-aid until I could get insurance through employment.

He believed I was in pain and figured while I didn't have insurance, he would do what he could to get me some relief.

He gave me samples of Lyrica and then some orange pill. The Lyrica did nothing but I felt better on the orange pill.

It was an opiate and my mother did not want me to take it because to her, the pain I was suffering was probably better than taking a dangerous drug.

It cost me $600 for a month's supply of the drug. After a week, it didn't work. I know that this was the last time I had fear about putting stuff in my body. I was taking pain killers, muscle relaters, anti-seizure medication and antidepressants all at one time. They were pretty pills but I felt no different on this cocktail. But I worried that I would lose control of something. I was an avid user - even when I stopped caring about existence - of Drug Interactions Checker. From this point, I made it a procedure to always run everything I was taking through that site.

My last visit he told me, "I think you might be in pain. But there is nothing I can do."

Neurology

I saw a neurologist because a neighbor doctor recommended it. He came over one day, sat at our kitchen table, read my paper (you can read it again here: Lyme Files: The Paper) and then asked me some questions.

He even recommended Dr. Christopher Reid. He knew him and said he was a top guy at Bryn Mawr Hospital. Well, I don't know who said that actually, but, when you are really sick and someone recommends a doctor, they always say, "top doctor!"

I sat on the other side of Dr. Reid's his desk in a complete brain fog. Thankfully, my mother was there because I was losing my memory at an alarming rate and I wasn't strong enough to deal with "are you faking it?" again. Thankfully, I had my parents who stood by me - most Lymies do not have that luxury. My parents, who I was living with, could see me breaking down and they could see my personality changing.

The doctor looked over the information I brought, looked at me and talked with my Mom a little. He suggested a sleep study, so I did that. After all, I wasn't sleeping. I was always tired. I had all the symptoms of someone with an inability to sleep.

There is a very big different between fatigue and being tired. Parents of young children are tired. They can sleep off being tired. Fatigue does not allow you to sleep - it is the drain on your system so deep you have no energy to move and there is nothing you can do to fix it. You just live in this fog of exhaustion with your eyes wide open. 

I remember being so anxious during the sleep study, I did not sleep. The nurse who ran the study told me all they needed was fraction of a second of sleep to get the information they needed. The sleep study only records data from all these cords and stuff, no one looks at a sleep study as how much you slept. The nurse who hooked me up to all these electrodes said they mostly get obese, older people with sleep apnea. He didn't have a heart monitor band small enough to go around my chest so he had to tape a big pinch in one.

This nurse was one of the rare people in the medical community who was  tender with me. He even said, "Is that a normal night for you?" and I laughed and said sometimes.

I knew better than to tell him how I would lay in bed feeling drunken-pukin'-dizzy and unable to close my eyes. When you drink way to much and you are waiting to throw up because the room is spinning out of control. That's how I went to bed every night. What I never told anyone was how I had felt this way since I was ten years old (1990).

. . although, to be fair, with tubes up your nose and electrodes and geln all over your head, it's not easy to get comfortable. I did go home and sleep.

When I returned to hear the results, the neurologist said everything was normal and questioned the amount of pain I was in. Then he just looked at me - something he couldn't solve - and said, "I guess you really want me to put metal under your skin an electrocute you, huh?"

I did not return.