I had NPR on briefly the other day and there was a segment on about trust (the brain science of it). They were taking callers on their issues/experiences with trust between … whatever it may be.
Trust, or more appropriately, the lack of it, has been a leading theme of my life since the summer of 2021. It’s something I think about often, daily even. It is well warranted and deeply rooted. It is unfortunate and unlikely to be turned around given what I’ve been through.
I have lost trust in most people (people I thought were friends mostly), but what I want to address, and in my head, if I had called in and had been able to talk about this on air (in some world), I would have discussed my (almost) complete mistrust in the medical community. No surprise, I’ve been very vocal about this on my social media. I’m not known to sugarcoat and if you know me, that’s not on my to-do list. If doctors and physicians had listened to me over the years, I would have been spared a whole lot of suffering. I’m not saying every single nurse, physician , or doctor is incompetent or uncaring. But from my experience, the majority have been. (Below: Picc line insertion gone horribly wrong)
But I’d like to thank the good ones and the ones who have held my hand (figuratively and literally) and listened to me and really heard me. My LLMD is fantastic, my ENT and my GP, and most recently my surgeon who is the kindest doctor I think I’ve met yet. A big thank you to them and the others who are out there. Without them, I’d have zero faith in the system at all. But it’s a dangerous career to have so many apathetic people walking around, misdiagnosing and mistreating folks. And in the Lyme community, this is rampant.
Even before Lyme, I had a hefty helping of bad experiences with physicians, but I’ll focus on tick-borne illnesses. I’ve been told that my debilitating pain was “in my head” numerous times or one time someone said it was “misguided feelings from my body.” “Everyone has back pain, it’s just something you have to live with.” This was in response to my first Lyme symptom- where I quite literally could not dress myself and was throwing up from pain daily, my quality of life was barely worth anything at this point.
Last summer (2021), after I was bitten and got Rocky Mountain Spotted Fever but didn’t know it yet and all my mostly dormant Lyme was reactivated, when I hit a wall and it all came crashing down, with 20+ doctor appointments in a matter of a few weeks, my hellish experience with physicians and doctors started adding up to a horrifying amount. I had 6 different kinds of “doctors” pretty much just ignore me and my symptoms and told me to carry on. One told me very confidently that I had one of two types of cancers. (Note: If I did have cancer, I’d be taken a lot more seriously by ex-friends and doctors).
Feeling like death, I went to a walk-in clinic in Taos, where a woman PA told me to “go home and youtube pain meditation videos.” I wish I had kicked her in the vagina. I wrote a couple letters and went in twice to raise some hell, knowing full well it would do nothing, but I had to do something. I’m not one to sit back and let people walk all over me, even when I feel like my body is being ripped apart. I later learned this grotesque excuse for a physician (and human) had a few other complaints under her belt and had been fired from one of the other clinics in town (so shocking).
I still hadn’t been diagnosed with Lyme or RMSF and was running around with my head cut-off, desperate. Five months later, when I was finally diagnosed by a wonderful and thoughtful PA in the ER, but still didn’t know I need a Lyme-specific doctor, I went to a neurologist.
This…horror show of a man… laughed (yes, really) at me, held his hand up in my face and told me to stop talking while I was telling him my symptoms. I again had gone in DESPERATE for relief from the nightmare I was living. He told me chronic Lyme doesn’t exist. He told me I was healthy. I wish I had kicked him in his dick.
When I later looked at my chart, this asinine fellow had actually LIED and made up symptoms that I never said I had. He said I likely had ankylosing spondylitis (I have zero symptoms of this), no mention of my CDC positive Lyme test. This man plainly made random things up and put them up in my chart. When I got the “how was your visit?” survey, you know what I did. I later had a lovely chat with the higher ups there. Did it do anything? Did this guy even get a slap on the wrist? Doubtful. All my reviews online have been removed. (Below: I spent so many wasted days at Holy Cross Medical Center last year and now I have to get weekly blood work and I have some mild PTSD every time I walk in there because of the treatment I have experienced. I dread the idea of seeing one of the nurses or doctors who have treated me like shit).
My GP (whom I love!), has had my back this whole wild ride. She is not Lyme literate but thankfully, she is on board with learning. Before I got my Lyme doctor, we had an appointment with a infections disease doctor. **ID doctors are a joke with tick borne illnesses and do not believe in chronic lyme and will not treat it. We did not know this at the time.** It was a phone call with the two of them, but she let me listen on the call. This man treated my GP with such utter disrespect I wanted to reach through the phone and rip his throat out. He said I do not have Lyme disease since I was being treated with antibiotics at the time (wild ignorance and incompetence, but this is what the CDC teaches and it is why so many of us are sick) and just kept yelling (actually yelling) at my GP. She was almost in tears when we talked after he hung up. I want so badly to defend those I care about, and I hated this for her, for us. She was trying to help me. I despise seeing the mistreatment of people who don’t deserve it. I don’t deal with it well.
Note: if anyone reading this is newly diagnosed with Lyme, never EVER deal with a neurologist, rheumatologist, infections disease doctor, or internal medicine person. They can’t help you, they can’t treat you. They won’t treat you. They don’t know what they are doing and most likely, they don’t care. You’re wasting your time.
My first attempt at treatment for chronic Lyme was intravenous antibiotics. (again, before I had my LLMD). Things went horribly wrong. Putting a PICC line in should be a pretty simple procedure, but it did not go well for me. They tried my left arm and what was supposed to be about a 30 minute thing ended up being almost 3 hours. They moved to my right arm, got it in but I was screaming in pain, and I have a high pain tolerance, when I was told it wasn’t supposed to hurt at all. Turns out they got it in my damn nerve instead of my vein. Incredible, horrible pain.
Someone more competent put the line in a few days later. (a PICC line is a sort of long catheter that is inserted through a peripheral vein into a larger vein. Mine went from my inner arm above elbow up near my heart). Every day I was supposed to get antibiotics this way. (It’s not uncommon to treat chronic Lyme with this approach, but it needs to be done for about 8+ months to make it work, on top of other antibiotics and herbs. I had to abort this whole thing for obvious reasons mentioned below.) PICC lines should be a bit sore for a couple days while they heal but they shouldn’t be causing you actual pain. You need to keep them dry and clean. I was obsessively meticulous about this.
So I was wondering why I was in so much agony. A few days went by and I asked the nurse why it was continuing to hurt so badly, is this normal? Also, it was leaking, which I knew I was supposed to be on the lookout for. I more or less got a “Sure, sure, sure.” Silly me, in my brain-fogged, incredibly sick state, still put some faith and trust in the system, in those who were supposed to be helping and healing me. What was I thinking? I thought they knew what they were doing, I thought they cared.
The next day, it was a different nurse who finally said “Oh shit,” and went to get the surgeon and I waited to get an ultrasound. You know the techs can’t tell you what they see on the ultrasound, but her poker face needed some fine tuning. The nurses hadn’t been flushing and taking care of the PICC line properly. They hadn’t listened to me days earlier when I told them it was hurting like hell and leaking.
So I had developed an almost 12 inch long DVT (deep vein thrombosis), which is a huge blood clot. So very rarely do they develop this quickly I was told. Unheard of said the surgeon. This was not because of any health or genetic issues of mine – this was because of pure negligence and blatant malpractice of the nurses who were not doing their job correctly. A lot of times these aren’t a huge deal and usually happen in the leg to people who are sedentary, or it is often a genetic issue. PICC or MID lines can be a risk but it’s rare because they are usually properly looked after. But for one that’s close to the heart, it’s a bit more of an not so great situation. (Below: Bruise from several missed vein attempts. This lasted and hurt for weeks. Couldn’t make a fist for a least a month)
So on top of all my Lyme, RMSF, and bartonella (still hadn’t been diagnosed with the last two) issues, feeling like my world was ending, Lucky Me got to go on blood thinners (really super extra fun for women who still get periods. I couldn’t leave the house when this happened) for 4 months, could barely move my left arm, couldn’t lift anything more than a carton of oat milk with it, couldn’t sleep on my left side for that entire time. Terrified this stupid clot was going straight to my heart. Bitter. Honestly? Still bitter. Don’t tell me not to be.
This could have easily been avoided had these people done their job.
I spent all day before Christmas Eve last year in the ER with another put-a-bullet-in-my-head migraine and skull crushing ear pain. I had already lost hearing in my left ear from tick borne infections and was terrified that was happening again (turns out it was, but no one would help me or listen to me or fucking believe me). I came in with my list of symptoms (I have learned to not do this anymore with new doctors and to only trust my LLMD and aforementioned doctors) and fears and honesty about Lyme (I was diagnosed in the same hospital where I was in the ER). The MD had the nerve to go to my infusion nurse ( I was still being treated with intravenous antibiotics, just not through the PICC line) and ask her point blank if I was crazy (I know because I was later told this). Some idiot male nurse came in at some point and stood across to me as I was crying from pain and concern about my hearing, crossed his arms and said “So you think you have Lyme’s (it’s LYME disease, you ignorant fool, find yourself a new career, one that possibly involves portable toilets maybe and I hope you drown in the swirling shit while you’re at it) disease?” I wish I would have ripped his dick off.
Needless to say, the 9 hours I spent in the ER were a complete waste of my time but it did solidify my disgust and distrust of the medical system and it’s practitioners. I jump started my search of Lyme literate medical doctors after that thankfully, I chose someone who doesn’t disrespect me, he listens to me, doesn’t belittle me, and someone I actually trust. Someone who can eventually make me feel like a person again. Someone who TREATS me like a person.
My experience is far from unique. When a (no longer) friend of 20+ years told me I was making all of the above up, telling me this was maybe “my reality,” but it wasn’t reality and this wasn’t what “really happened” …what an incredible slap in the face, what an insulting pile of steaming nonsense to come out of her imbecilic mouth. She and others who share her mindset need to learn to keep their mouths shut. I suggest therapy (and a lot of it) and maybe a self help book on basic empathy and compassion. Stare in the mirror every day and really examine the sad person you are.
A while back, I asked on one of the Lyme groups I’m on what was the worst thing that people have been told by a medical “professional.” I received hundreds of comments, because like I said, in this community and in the chronic illness community in general – this is unfortunate norm. We are treated horribly. It is sickening and it should not be tolerated and it needs to be addressed. For those who have received this type of treatment, please call these doctors and physicians out. Please, pretty please. It take some energy- energy a lot of us barely can muster- and it may not even do any good, but maybe it will. (Below: Evolution of PICC line bruise. Turned it into a bull. A bull I’d love to use as a metaphor to butt out this bullshit that we receive)
Here are just a few responses from people who responded (I asked if I could share them, and thank you to those who responded). *There were a ton of responses about doctors telling us that Lyme doesn’t exists where we live which is just maddening and ignorant. I didn’t include those because there were so many.*
“You’re overworked, stressed, married, kids you’re a female…go to the gym and exercise.”
“You’re probably just getting old.”
“Well your test results show positive for Lyme disease, but I know you already had doxycycline last year. I could prescribe you some antidepressants if you want.”
“I was told not to read about Lyme and to eat an apple everyday and it would just go away. This was an infectious disease specialist with four positive Lyme tests in his hands.”
“I was told by a pompous male cardiologist that Lyme was a fad and I don’t have it.”
“ You have an obsessive compulsive disorder towards pain”
“Neurologist in reputable hospital in Switzerland when I came for weakness in legs and twitching all over: “Its just a tic. Do some yoga and you will be fine. If you are coming again, we will refer you to psychologist. Good luck.”
“Have you thought about having a baby? Having a baby usually straightens your health out.”
“I was asked to leave for asking too many questions. I was just trying to be my best patient advocate after being ill for so long.”
“I was told my bullseye bite on my arm 25 years ago was a coldsore. Finally had my blood work sent to California. As I suspected it’s Lyme. Years & years of unnecessarily illness.”
“I was in major leg and groin, back pain. Family dr put me on morphine and Gabapentin. Kept increasing dose, but didn’t help. She then said “maybe it’s all in your head.”
Our demands, our desires, our basic human wants aren’t unreasonable. We aren’t asking for much. We want respect. We want to be listened to, we want to be heard.
Most of all, we want to heal. It is not too much to ask. It is barely asking anything at all.