After 5 years of confusion, sadness, frustration, and now, I’m thankful for right now.
I’m thankful for God and my faith and my husband’s faith to keep us strong and always praying for answers or guidance to stay on the right path.
I’m thankful for Pinterest. (I’ll explain this one)
I’m thankful for social media. (I’ll explain this too)
I’m thankful that I don’t live in a socialist country and I can see which ever and how many ever doctors that I want.
May 2015, Livia was born. I had reached my out of pocket maximum and decided in November to finally get some testing (100% insurance paid) done on these migraine episodes I’ve had on and off for 15 years.
I saw my PCP and she coordinated with a neuro to get me in for my first MRI. After that, the confusion all started… I’ll try to keep this short and sweet… (hopefully)
Neurologist/Doc #1 read my MRI results and said I had MS (multiple sclerosis) and optic neuritis. The “optic neuritis” was actually caused by this “substitute” eye doc I had seen 2 weeks before that must’ve had an eye fetish or something because she touched my eye (like literally poked me in the eye) with her bare finger. This caused an infection so painful that I couldn’t move my eye in its socket. I had to turn my head to where I wanted to look.
So, Doc #1 put me in the hospital on the Monday before Thanksgiving. I got out on Thanksgiving 13lbs heavier of water weight from the IV steroids. I managed to eliminate all of the water weight on the 3rd night after leaving the hospital every 30 minutes. Let’s just say I didn’t sleep much that night and might’ve even fallen asleep on the toilet.
Doc #1 that put me in hospital was awful. He tried to scare me into starting MS meds when I absolutely refused because I was still wanting to breastfeed Livia for an entire year. He wanted me on MS meds that you need to inject yourself with every other day. I fired him and I got a second opinion.
February 2016, Doc #2 (in the same office as Doc #1) actually looked at my spinal tap results from my hospital stay and said that I didn’t have MS. We loved him but I hated the office. They were, and still are, incompetent (much like many doc offices these days).
So, March 2017, I found Doc #3. I trusted him briefly until he ordered a new MRI and said that in the year since my last MRI I had developed 6 new spots. When I asked him if he thinks it’s really MS, his answer was literally, “Eh” so I fired him.
August 2017, I saw Doc #4. A “world renowned MS specialist” at UTSW in the heart of Dallas. He said he was an expert on MRIs and so cockily also said that I did have MS. He said Doc #1 was wrong about the optic neuritis. He said Doc #3 was wrong about the 6 new spots. He said I was one of the best cases he’s ever seen of MS but still said I needed to be on MS meds.
With my insurance at that time Doc #4 was $600 and an hour away so they said they’d help me find a good doctor in my area to continue treating me. That never happened.
So, 3 years later I’m back at the beginning with a list of doctors I don’t want to ever see again. I did have some peace of mind that the “MS specialist” said that my MS wasn’t as advanced and scary as Doc #1 and #3 said I was.
I found the urgent need to find a new doc that could see me immediately (Doc#5) when I developed my first case of vertigo. Doc #5 said I needed another (expensive) MRI just to check the vertigo. All I wanted was a steroid pack to see if it was inflammation causing my vertigo. I overheard him say to a nurse that he thought it was just a stomach bug.
I actually took some version of Dramamine and my vertigo was gone. Turns out the vertigo was caused by a horrible flight/airline experience.
Sept 2019, 10 days before my birthday, and 2 weeks after the most stress I’ve ever had at a job, I went to the hospital with numb skin. It wasn’t completely numb/without feeling. Kind of like numb cheeks after a trip to the dentist. This weird skin sensation started at my belly button on a Friday morning and by Saturday at noon it was from my ribs to my knees. Due to my medical history they treated me with IV steroids for the MS. But I also insisted that this was not just an MS symptom and to work me up for everything.
What were my MS symptoms until now…? Stiff muscles, occasional ice prick sensations on varying parts of my body, and constant tingling hands and feet (like they’re always trying to wake up from being asleep)… that’s it. Nothing else. But those pesky 2 spots on an MRI fooled a lot of people… until they didn’t.
While in the hospital I had yet again, another MRI. I remember it was on a Sunday because the tech was updating me while in the claustrophobic tube each time the Cowboys scored (or didn’t score).
The next day, Monday, I get a visit from the hospital neuro on duty. She tells me something that turns my next 4 months into a whirlwind of more doc visits and research. Neuro says, “the radiologist is confused as to why you’ve been told you have MS.”
That poor on-duty neuro. I unleashed and word-vomited my entire story to her. She gets me an appointment… get this… with an “MS specialist” the same doc office I hated from Docs 1&2.
While still in the hospital, my skin wasn’t getting any better from the steroids, my back/shoulders were in so much pain that a Percocet and Hydrocodone didn’t help. The nurses got me heating pads and I even had one sweet nurse rub my shoulders. I couldn’t breathe and I had little red spots show up on my skin (that the most incompetent nurse I’ve ever had said maybe I spilled grape juice on myself). My calves were like rocks and my hips felt like they needed to be replaced.
I posted in my local online mom group looking for a new Neuro and/or to connect with local MS moms. I got many responses that were sweet, caring, and supportive. They were somewhat helpful but didn’t solve my many year dilemma.
I left the hospital worse than when I went in. I was still in pain, with numb skin, and couldn’t ever get enough air/ deep breath. And, 11 lbs heavier with steroid water weight.
A few days later, a local mom commented on my post. Ms. S said that she didn’t think it was MS at all. She thought I had Lyme. I immediately went into my Pinterest and looked at my pins I had saved that discuss mimicking diseases (MS, fibromyalgia, Lyme, RA, etc.). After all, I had multiple docs saying it was MS but I never 100% believed any of them. I sent a private message to Ms S and impatiently waited for her to respond. To be fair, she responded in 10 min but that 10 minutes felt like an eternity.
Two strangers talked on the phone for an hour. We discussed tests and treatments; her previous symptoms and my current symptoms.
I couldn’t sleep that night. Not only because of my shoulder pain and inability to catch my breath but the amount of research I was doing. My head was spinning with doubt and possibilities. I remembered reading a very lengthy article in 2016 that had way too many scientific words to keep my attention until I got to the conclusion. From MS and Lyme cadaver research, not all Lyme patients had MS but all “MS patients” had Lyme. (Or something like that…) That article had stuck with me for years.
A few days later, on my birthday, as I drove to meet my brothers to have breakfast and go to the State fair, I spoke to my dad. He said my grandmother had told her nurse neighbor about my symptoms and her neighbor, who I had never met in my life, also thought I had Lyme.
That was it. I was convinced. Two strangers that only knew my symptoms said I had Lyme. I had another month and a half before my appointment with the new “MS specialist/Doc#6” at the office I hated. So I began my mission to find my own personal Dr. Gregory House somewhere in Dallas before I had see Doc #6.
I found an internal doc in Plano that would actually look at all my symptoms. She didn’t roll her eyes when I said it was Lyme. She listened to me and sent me to the vampires at Quest. I let them suck the blood out of me and she gave me results 2 weeks later.
No Lyme. I am sensitive to wheat, beef, apples, and bananas though. I sent Ms. S all of my lab results. She reminded me that CDC testing for Lyme that’s done at Quest and Labcorp is 80% false negative.
I keep my appt with the “MS specialist” (notice I call them specialists with “quotes”). She says I have MS. She also charges me for 2 visits due of the amount time she spent with me. Actually, the visit was on average or shorter than what all my other docs had ever spent with me. I had enough. It was the holidays and I was taking a break from it all.
I met up with my youngest bro at my grandmothers house to help with Thanksgiving 2019 dinner. We worked so hard and by the time everyone was there, I was on the floor with the most fatigue I’d felt in my life. At least I could just lay there and watch the Cowboys.
Fast-forward to summer 2020. I’m still using a heating pad on my shoulders every night before bed. I went on a mini vacay with my BFF and got very ill with extreme nausea and labor type pains from a night of drinking that in the past would only have given me a slight hangover that some greasy fast food would’ve cured.
I knew the world’s worst hangover wasn’t normal. So I got off my butt and found an actual LLMD (Lyme literate MD). These docs don’t roll their eyes, look at you like you’re crazy, or call you Dr. Google when you mention Lyme.
I also transferred care in the same office from Doc #6, the “specialist”, back to Doc #2 (the doc that originally said I didn’t have MS).
Beginning of September, I went to a fitness bootcamp at my church. I’m one of the younger ones there and I was walking out of the workout with the most floppy legs than anyone else after lunges, burpees, and squats. I literally thought my legs would collapse and my knees were locking up. My legs were complete jello.
The entire week following the first bootcamp workout, my legs were in excruciating pain. My knees kept buckling when walking and I actually tried to not drink too much water because lifting myself on and off toilet to pee was difficult without leg muscles. (Think the 2nd day after “leg day” x 100) I paced the floor at night trying to make myself so tired that the pain doesn’t keep me awake in bed. I refused to take just one pill from my stash of hydrocodone because since ACA passed, docs are terrified to prescribe more.
Six days after the first bootcamp meeting, my skin is numb just like a year ago. I go to Doc #2 and he starts doing more testing. I tell him I’m seeing a functional medicine/Lyme doc in October. I contact Ms. S and whine and moan to her. She meets me for an extended lunch and tells me more about Lyme. I tell her that I have an appointment with a Lyme doc in 2 weeks. I get my grandmother’s nurse friend’s phone number to ask her why she thought I had Lyme. She couldn’t really remember the exact reasons why but coincidentally at the time I was in the hospital she was doing a lot of research about Lyme. She said as my grandmother listed my symptoms to her, she just had the strong feeling it was Lyme. The numb skin went away in about 10 days.
On October 13, I leave early in the morning and drive 4 hours to Texas Hill country to see Doc Lyme. She listens to everything. She nods her head when I mention all my symptoms. She conducts a questionnaire that any score above a 40 is high probability of Lyme. I scored an 86. While there, they conduct one of the expensive tests that Ms S told me about a year ago. They also tested me for mold as Lyme patients are very sensitive to mold. I get done at 5pm and drive 4 hours back home the same day, exhausted.
A week later, my skin is numb again. The worst it’s ever been. I had the feeling of nails piercing my feet when walking and it was like duct tape was stuck on them when laying in bed. I can’t wear clothes without my numb skin crawling. I literally couldn’t feel when I was done peeing.
I finally realized that my first skin episode happened after a very hard leg workout with a personal trainer. My second numb skin episode was after the bootcamp at the church. And the latest and worst skin episode was a week after spending 4 hours outside painting fence poles essentially doing squats to paint the bottom. Good thing is, I have an excuse to not do squats.
October 25, Doc Lyme calls and says the tests confirm I have Lyme. Not “CDC Lyme” but I have the alternative IGM antibodies (which means they are old antibodies). So, I’ve had Lyme for a very long time.
So, why was I worse after leaving the hospital in Sept 2019? Because Lyme hates, or loves depending on the way you think about it, steroids. It will make Lyme symptoms thousands times worse. And I had extremely high dose steroids shoved in me via IV. After you leave the hospital they give you more steroids to taper your system down from the IV.
They say don’t shop while hungry. They say don’t drink and drive. I realized during my steroid taper to not shop or drive or go to work on steroids. Don’t shop? Yeah, well, maybe. I bought some new glasses that I’d been eyeballing at Target for months but they weren’t my usual little small face frames. I boldly put on my new light purple Coach frames and went to work and everyone loved them. Don’t drive? Well, I have a radar detector, so there’s that… (I’m a very good driver and aware of my surroundings unlike many that I encounter)
Don’t go to work? Let’s just say steroids make me feel high. Like euphorically happy but can cry at anything at anytime. I was to lead a series of JIRA training calls for hundreds of people the week after I was in the hospital. When I came back to work, high on steroids, I couldn’t create one coherent thought let alone take screenshots for a procedure document. I couldn’t, or shouldn’t have, actually lead a live training call.
I did one of these calls (I feel sorry for the people that listened and watched my mouse randomly flash all over my screen) and afterwards I went to my boss’s boss and a few tears fell down my face (see, I cried at everything) as I explained I’m not 100%. I can do this better. I need to be off these steroids. He understood completely and told me to just get better.
After the Lyme diagnoses, all these years of late night research and prayer and feeling that something wasn’t adding up rushed over me. All these years of weird symptoms and no true answer and I finally had an answer. I felt relief but also instant anger. How many other people had my previous doctors misdiagnosed? Two “specialists” said I had MS. Even looking back at the documents from Doc #6 showed a list of common MS symptoms. This list was completed with the word “none” next to 99% of them. Meaning, I had only the tingling hands and feet as an MS symptom. How many of the doctors just went by what the 1st radiologist’s report said? It was the radiologist from my 1st through 4th MRIs that said it was MS. Did these doctors even think for themselves? I wanted to send the hospital radiologist (that said I didn’t have MS) a million dollars, or just bake him a lot of cookies. I wanted to send emails to all of the dumb doctors that said this was MS telling them they were stupid. I probably will just send them this and just tell them which doctor number they are.
I’m happy to report I started a natural tincture 3 weeks ago with a binder to flush out the bugs that the tincture kills. It puts me on a “can’t eat 2 hours before or after the binder/no snacking whenever you want” type diet but the up-side is you lose weight when you can’t go randomly grab a handful of your kid’s teddy grahams. I also can’t eat wheat, chocolate, coffee, beans, rice, or cheese due to the 5 different kinds of mold in me too.
No more piercing heart pains and insanely tense muscles. The tingling is still there but it will probably be there forever because of the little bugs that attacked my spinal cord. My hair is still falling out but good news is it has slowed and it’s not my thyroid’s fault.
As of today, 5.5 weeks after the start of the latest skin episode, my skin is almost back to normal. Something as little as numb skin all over and the inability to feel your feet as you walk will test your sanity exponentially more than most life experiences. It’ll make you feel like a terrible mom because your kids are now afraid to touch you.
So, again, I’m thankful for Pinterest and the ability to save and organize websites so I can find them when I need them. I’m thankful for social media groups for connecting me to Ms S. (I need to think of a really good Christmas present for her-even though she can totally read this)…
I’m thankful for the ability to fire doctors when I just don’t trust them or their ability to do anything besides what big pharma tells them to do.
I’m thankful for my husband when he said I think you should hold off on the MS meds until we are 100% sure that you have MS. He said it on the same day I started the meds and I didn’t like the bathroom side effects myself.
I’m thankful for my sweet daughters that understand sometimes I can’t control the anxiety and mood swings that not only the diagnostic process had caused but the Lyme has caused. I won’t even list all the neurological symptoms that Lyme has gifted me with. There are some things that I just can’t remember or comprehend the first, or second or third, time due to focus issues. Others,like change management and process improvement, is thankfully still very much intact.
I’m thankful for God’s path to where I am now. It was Him that had shown the light on these doctors and gave me the insight to know that they were all so wrong. It was Him that gave me and my husband gut feelings that it was not MS.
I’m thankful for anyone who read this far and that truly cares. I hope that my story, whether you’re a personal friend of mine or an MS sufferer, helps you or someone you know. If you have RA or fibromyalgia, you might want to take a second look at your symptoms. If a doctor diagnosed you with “chronic fatigue syndrome” please, please do your research. From a functional doctors perspective, there is no such thing as chronic fatigue. You need to find the source.
There are thousands of stories like mine where the patient ended up with Lyme. Kris Kristopherson is a perfect example and his long dementia misdiagnosis experience. I watched a video of a mom that kept going to the doc and they just kept dismissing her symptoms as “just being tired” from being a mom. (This also happened to me)
Lyme is diagnosed statistically more than breast cancer but it’s not profitable for pharma so Lyme is still thought of as taboo. Most people don’t know they were bitten by a tick or see a rash. Most people don’t even know to get the tick tested when they pull one off. Most PCP doctors think that Lyme is only an issue in the North US. Most PCPs will just send people for tests that are 80% false negative. And almost everyone doesn’t know that you don’t only get Lyme from a tick.
I have no idea where I got my Lyme from. I have no idea where I got the black mold in my system from as we thankfully learned it’s not in our house after testing. Lyme and mold treatment is usually not covered by insurance nor are the doc visits or the expensive testing. Treatments for Lyme or Mold or both range from antibiotics to natural antifungals to bee venom therapy to hyperbaric chamber treatments. Also, not all Lyme is “curable”. My friends and family have been elated that it’s not MS and were thinking that Lyme can be cured. Lyme can usually be “cured” if it’s caught early. My tingling hands and feet and heart pricks tell me that I can feel better soon, but killing these bugs buried deep inside me somewhere will be a journey. And of course, we’ll praying for healing.
While I’m not a doctor at all, it is my belief that Multiple Sclerosis is slightly a lazy diagnosis. Multiple Sclerosis means many lesions. It’s like the person that coined that term gave up on finding out what is actually causing the lesions.
Doc #2 was in the process of finding out what had caused my lesions until I went to a Lyme doc. Lesions can come from cluster headaches or trauma or many other reasons than just “MS”.
In the end, one Lyme doc in Austin proved 3 neurologists, 2 MS specialists, and 1 radiologist wrong. And they were profoundly wrong on something that could’ve changed (and briefly did change) my life forever.