This post is rather hard for me to write but if I experienced this just last week ( and have many times in my life ) then I know there have got to be tons of you out there experiencing something similar.
So I will do the only thing I know how to do… talk about it in hopes to help someone out there who may be in the same position!
Many of you know that in June I was diagnosed with chronic Lyme disease, toxic mold poisoning, MCAS, parasites, severe hormone imbalances, and a handful of other health concerns. All of these are very serious, but to me Lyme disease has been the real kicker because of all of the complications that come along with it — including the 8 co-infections or “Lyme cousins” that I have developed from it.
ANYWAY, I am having a fibroid removal surgery on Friday (yes, tomorrow!) to remove the GRAPEFRUIT SIZED mass that has grown on my uterus due to Lyme & co-infections (and other hormonal issues) — and because of that surgery I have had to see many, many doctors that I wouldn’t normally see in order to get cleared for this pretty major procedure.
My general practitioner is in Sacramento, because I really haven’t had a reason to see a regular MD in the last several years. My medical team in LA consists of my functional medicine doctor, my Lyme specialist, my OBGYN, and various healers and Ayurvedic practitioners. Keep in mind… the first three I listed are MD’s!
But alas, even the wonderful MD’s that I see on the regular are not the types of doctors that I needed to see in order to get fully cleared for this surgery. I did have to get cleared from my Lyme doctor, which was a given because she knows that having a large fibroid is causing me tons of extra health complications and that it’s gotta go.
But in order to get fully cleared, I also had to see an internist from UCLA (otherwise known as a general practitioner / MD) to have a physical and also get an MRI to make sure there weren’t additional masses or issues to address during the surgery.
Here in lies my story…
Before I found my Functional Medicine Doctor and my life-saving Lyme doctor and her team, I found it incredibly difficult to find a good doctor in LA. When I was suffering from head to toe hives and eczema earlier this year, I saw a handful of urgent care doctors who were just bleh & a dermatologist who was so NOT-THOROUGH with his job that it was legitimately scarring.
Not to mention the last decade and a half of trying to get answers for my health problems from doctor after doctor with absolutely no avail, but we will save that for another day.
The Doctor’s Visit From HELL //
SO! Last week, the day finally came to go to my appointment with the MD from UCLA. My mom found him for me because with the constant brain fog I experience from Lyme, searching through UCLA’s system of thousands & thousands of doctors who may or may not be available before my surgery sounded like a very tedious task.
She found him, we booked it, the appointment came. I wasn’t particularly looking forward to it, as I feel very well taken care of by my Lyme doctor and it is always an absolute marathon and a half to share my turbulent medical history and recent diagnoses with yet another new-to-me doctor, but I went into it with a positive attitude (as I try to do with everything).
But from the moment I arrived, everything was off.
I will let it slide that I waited for an hour (!!!) in the waiting room, because I guess that’s how it goes in the medical system these days but that was frustrating point number one. Yet like I said, no big deal if the doctor was going to be great and the experience was going to be painless overall.
The nurse took my vitals and I felt like telling her, “Don’t worry, my vitals are fine and I happen to know this because I spend 2-3 full days a week in my doctor’s office receiving Lyme treatments, often hooked up to an EKG.” But I didn’t, I let her do her job. 🙂
Then, a while later, in came the doctor. He was a younger looking guy, very similar to the UCLA dermatologist I had seen, but at first I took that as a good sign!! Okay, young, cool, maybe that means you’re up to date with the Lyme epidemic and other issues of mine!
We started going through my chart, and when I told him that I had Lyme disease by way of explaining the 35+ herbal supplements that I am currently on, his response was:
“Oh, really?” *smirk smirk smirk as if to suggest I definitely don’t have this disease* “I’ve never met anyone with Lymes disease. What exactly are your symptoms?”
For one, he’d called it Lymes. Plural. That is a personal pet peeve of mine in general because its incorrect (Lyme is named after Lyme, Connecticut, the town in which it was first reported) but also…. this was a medical doctor speaking to me! Someone who should maybe know a thing or two about Lyme? One of the fastest growing epidemics in our country?
Anyway though I was very willing to chat with him and was still trying to give him the benefit of the doubt… so still, no big. Cool it, Jordan.
I told him my symptoms: “Full body rashes, chronic debilitating exhaustion, brain fog, joint pain, body aches, hormone imbalances… hence the fibroid.” And then I told him even more just to give him a little heads up about what Lyme is like and how everyone experiences it quite differently.
His next response: “Well, you can’t get Lymes on the West Coast. So SURELY you’ve spent a great deal of time on the East Coast???”
So of course I told him, “Why yes, I lived in New York for a year and spent a lot of time in the Hamptons and Upstate.” Although in my head I was thinking: You can get Lyme anywhere, dude. It’s a rampant problem right here in Los Angeles.
Then he said, “Well, if you have LYMES, then I guess you should have been given an antibiotic and you’d be better by now, so that shouldn’t be a concern.”
*OK RAGE THROUGH THE ROOF IS STARTING TO ENSUE*
I calmly tried to tell him that there is not an antibiotic that cures Lyme, especially not for someone who has likely had it for many years. He decided to drop this point because he was bored and didn’t like not knowing anything about this disease.
So we moved on to the next subject.
“Well then Jordan, what other complications do you have from LYMES?”
“Well unfortunately I also suffer from mold poisoning due to my weakened immune system from Lyme,” I told him.
“Mold poisoning?” – Him
“Yes…. mycotoxin illness?” – Me, confused as to why I am now having to use the medical term for mold poisoning, talking to a doctor.
“Interesting,” *smirk smirk smirk smirk* “I’ve never heard of it.”
By now I was just over it. I was filled with anger of course, but not even for me (well okay yes for me but for so much more than just me). For the hundreds of thousands or rather millions of people who are wronged by the medical system every year — by doctors like this one who are fresh out of medical school but somehow completely uneducated about various issues that are becoming a HUGE problem in our toxic world.
And this is not to say that I don’t respect the medical system. I have dear friends and family members who have gone through the intense & profound process of receiving a medical school education and they are doing fabulous things for the world: surgery, anesthesia, vaccinations, pediatrics! But I seriously believe that something in this system has to change… doctors should not be graduating from medical school and treating patients with absolutely no knowledge of the symptoms of Lyme disease or the possible co-infections.
So of course my response to him was: “You’ve….. never heard of people getting sick from mold? Black mold poisoning? It is a very common issue for people with Lyme, but also just for people in general.”
I didn’t even go into the MTFHR gene or the other multi-susceptibility genes that make mold illness absolutely debilitating and life threatening for many people.
“Yeah, well I’ve never met or treated anyone with Lymes. We live in California.” – he reiterated.
From there on out I had given up on this guy. Of course I wanted to get cleared for my surgery, which was what I came for, but that was it. I didn’t feel he was even remotely adequate enough to clear me for this surgery, given that he was 100% unfamiliar with every single one of my health concerns, but I had already been cleared by my Lyme doctor so I just needed his sign off.
He proceeded to also have no idea about…
+ testosterone cream, another thing I have to take for my “broken” hormones due to Lyme (he proceeded to insist that testosterone CREAM does not exist so I just went with it to assuage his ego)
+ curcumin, which is the most anti-inflammatory component in turmeric. I will let that one go but honestly as a doctor, get with it!
+ MCAS, which I really avoided telling him about to be honest but he was very confused about what I was saying in regards to my histamine levels being off the charts so I had to explain it in the end
+ blogging as a career, LOL but really that one does not bother me but it was icing on the cake with this guy!
SO THERE YA HAVE IT YOU GUYS, my doctor’s appointment from hell!
It breaks my heart that Lyme disease, with over 300,000 diagnoses each YEAR (so imagine all the people going undiagnosed), which brings it to one of the most rapidly growing epidemics of our time.
UCLA is a teaching hospital! A research hospital! A top hospital in the world! Excuse my language but why in the actual f*ck is this doctor allowed to do his job with such little knowledge about these health concerns? I understand that Lyme is perhaps not prevalent enough for most doctors to become experts in, but a brief education about *what it’s called* and what the SYMPTOMS are would be nice… ya know, so people can get diagnosed if they have it?
It was a very sore subject for me because I spent so many years seeing SO many different doctors to try to figure out what was wrong with my health. Time and time and time again, I was given no answers.
As a young child I was given endoscopies and colonoscopies only to be told that my entire body was clean as a whistle — no disease, no ulcers, no issues.
I spent MANY years that I will never get back being extremely ill, with no one to believe me except for my own family who saw the pain I was in every day.
I will continue to write and share about this, because the people suffering from Lyme disease, mold, and other co-infections, and ALL other hard to treat and diagnose diseases deserve SO. MUCH. BETTER.
If you suspect that you have any symptoms that could be Lyme or even mold poisoning or MCAS, find a Lyme Literate MD (LLMD) and get tested! And if you too have horror stories with doctors, share them below. <3 You are not alone — you never were, and you never are.
Thank you so much for listening my loves & send me good vibes for my surgery tomorrow! I will be updating you like crazy, and we will even be documenting for YouTube — so subscribe if you haven’t yet!! XO