EP01 - Metal Allergies, Chronic Pain & Systemic Symptoms: A Life-Threatening & Under-Reported Reality

Hello Metalheads, and welcome to the very first episode of the Heavily Metalled Podcast! I’m so excited to have you join me on this journey deep into the hot button topic of metal allergies.

Why this podcast? I almost died from an undetected allergy to orthopedic and dental hardware. This allergy is what's known as a cell mediated, type IV, delayed hypersensitivity reaction to metal alloys. It can present as systemic pain, neurological issues, autonomic nervous system dysfunction, cardiac abnormalities, autoimmune diseases, and a whole host of other signs and symptoms.

Many patients are unaware that during routine surgeries and tests such as colonoscopies, appendectomies, hysterectomies, thyroid and gallbladder surgeries, even biopsies and more that metal clips, staples, and biopsy markers, just to name a few, are routinely left inside them without their knowledge.

If they have orthopedic procedures or dental implants, and do know that they have implanted hardware, oftentimes they're not told that metal allergies and foreign body reactions are real, nor are they told what signs and symptoms to watch for. These metal allergies are flying below the radar of physicians, surgeons, dentists, and other medical professionals. Physicians are not asking the important questions prior to surgery.

They are not advocating for or are knowledgeable regarding testing options for metal allergies. They believe that reactions are rare, instead of realizing that they are under-diagnosed and under-reported.

Surgeons and other providers have forgotten that commercially pure titanium does not exist. It is always alloyed with other metals, and many don't know that an allergy to titanium is really a thing. It's not inert. All metals corrode and degrade within the body, and many common surgical metals release toxic ions into the bloodstream. 

Patients are suffering going bankrupt and dying because they don't realize that they could be allergic to what's inside them. I'll even bring up that you can have immune reactions to the foreign body inside you, even if there is no allergy, just because the body's intelligent enough to realize it doesn't need to be there. 

But back to the metal allergy thing, physicians are not trained to recognize the vast number of signs and symptoms that this metal allergy produces.

How many cases of “fibromyalgia” are in fact reactions to metal inside of the patients that they don't realize is there, or that they don't realize that they're allergic to? 

My story is long and it's emotionally hard for me to tell. Patients that have been through what I've been through feel the same way. It is somewhat traumatic to tell our stories over and over again, so part of my goal with this podcast is to create an online repository of our stories. We'll discuss what worked and what hasn't worked in regards to recovery, and the website will provide a comprehensive list of resources to help others on their journey of diagnosing and overcoming metal allergies.

We have many patient interviews on the schedule that will show you just how not rare this allergy is. Many have made absolutely dramatic recoveries from years and even decades of severe, chronic illness. Their stories will absolutely blow your mind and make you question everything you thought you knew.

Along with patient stories, future episodes on the docket are gonna include guest appearances by surgeons, physicians, and industry experts on a variety of metal allergy related subjects such as clinical trials, testing, device manufacturing, surgical experiences, patient advocacy, metal toxicity, mental health, and even detox. We're gonna have special Q&A episodes, how-to’s on adverse event reporting—which I still need to do—advanced directive guidance and all you need to know about pre-surgical consents.

We are truly calling for a badly needed change within the medical industry , as well as improved legislation and regulation for us and others like us. 

So let's go ahead and get into it. 

First things first. What's a type IV metal allergy? A type IV, cell mediated delayed hypersensitivity reaction is a type of immune response that involves activation of T-cells, which are a type of white blood cell in response to exposure to a specific antigen. This reaction occurs several hours to a few days after exposure and results in inflammation and tissue damage at the site.

An example of a type IV reaction would be something like contact dermatitis. A type four allergic reaction is different from food allergies, different than seasonal allergies or symptoms. While both types of reactions are hypersensitivity reactions, they are different in terms of their mechanism, their time to onset, their symptoms and their triggers. 

So let's look at them. 

Type I reactions usually occur immediately after an exposure to an allergen, usually within minutes to an hour, while the time to onset for type IV reactions occurs several hours to a few days after exposure. The mechanism for type I reactions involves the release of histamine and other mediators from mast cells in response to the binding of allergen to IgE antibodies.

By contrast, type IV reactions involve the activation of T-cells, which lead to inflammation and tissue damage. Regarding symptoms, type I reactions often result in symptoms such as itching, hives, swelling, and difficulty breathing. Instead, type IV reactions cause a range of symptoms, which can include skin, redness, swelling, itching.They can also result in chronic infections and autoimmune diseases. 

As far as triggers are concerned, type I reactions are triggered by allergens such as pollen, animal dander, or certain foods. Type IV reactions differ as they're triggered by antigens such as chronic infections, and contact with certain metals or chemicals.

So now that you understand which type of allergy I'm talking about within the context of the podcast, let's talk about my personal story. 

My story has a TON of ups and downs, and the short version is pretty much that I went from active, thin, healthy to a litany of health issues and surgeries. I fought a brutal battle with Lyme disease—there’s that chronic infection component—it was brought on by an immune system that literally cratered due to the reaction caused by my implanted medical hardware. I have lots of it, and it was all implanted during about half a decade, which is a relatively short period of time. Once we found out the true issue, looking back over the very long history, we were finally able to connect All. The. Dots. Not kidding. 

I learned the hard way what many doctors don't even believe is possible. Not only is metal allergy possible, but it is a huge issue occurring for many people.

As I've already mentioned, it's not something that is even on their collective radars overall. 

Just before my diagnosis, I had an appointment with a physician that was fellowship trained as an allergist, immunologist and rheumatologist.

She is board certified in internal medicine, and I just KNEW that she was going to solve all my problems. 

I paid a lot of money for her to tell me that she didn't know what was wrong with me or why I had so much pain, but that I'd pretty much just have to live with my symptoms. Literally offered me no hope whatsoever because she said I wasn't exhibiting any of the signs of an allergy to metals.

Let me tell you that I got a crash course in metal allergies and pretty quickly learned that I was exhibiting EVERY symptom of metal allergies! 

I would then utter one of my favorite quotes, about 50% of doctors graduating in the bottom half of their class. For real. In reality, the practice of medicine isn't that simple or straightforward.

So I'll go back and start at the beginning because I really want you to have the whole story and to see how a lot of seemingly very small issues added up to create one big, massive storm. Even the details I'm about to share that you may not think will tie in, I promise you will in the end and you will be shocked at the intricacies of this crazy journey.

I was always super active. I grew up in the mountains of the west where I developed my total love for the outdoors. I loved to travel and am a complete and total gypsy. I participated in professional rodeo as a barrel racer. I toured the world as a publicist for some of the world's largest rock bands, which is my throwback and hat tip to them with the Heavily Metalled Podcast, and I wrote for a popular national music magazine. 

I competed in ballroom styled country western dance. I loved to snow and water ski and even taught ski school. I loved to trail ride on horseback through the mountains, go whitewater river rafting and hiking in God's country. I cared a lot about fitness and often worked out five days a week. My motto was pretty much, “I'll sleep when I'm dead”, because I lived and played hard.

I was also pretty hard on my body and by the time I was a young adult, my body was literally already feeling 60 years old. When I was 14 years old, I flew off the back of a motorcycle at 70 miles an hour…yes, you heard that right… wearing a dress, no shoes and no helmet. 

What followed that was 48 hours in the ER where they pulled over a thousand microscopic rocks out of the bottom of my feet and scrubbed my raw skin with a wire brush to clean me up.

You can't even imagine the pain cuz I don't do pain meds. I was covered with second degree burns from the asphalt and spent over a month in bed recovering. 

I had to learn to walk again. I still have a lot of asphalt that's embedded in my leg and I was pretty lucky I lived.

I endured several serious car accidents in my twenties and had my fair share of going head over heels on snow and water skis. Once a horse I was on spooked at something and threw me straight over its head, about 20 feet, where I promptly landed flat on my tailbone. Then there was my rodeo and barrel racing hobby, which repeatedly slammed my pelvis into the saddle as my horse rounded barrels at lightning speed.

You know, I mean, doesn't that all sound like a lot of fun? It was seriously fun. I've had a really, really great life. I miss it a lot.

A joke throughout all my youth is that something always happened or hurt, and I even won an award for that at a church camp. 

The only thing really worth mentioning about my relationship to metal in my youth is that like everybody, I had a lot of trouble with earrings and cheap jewelry. 

I always just thought that this was normal. I never had braces, never had retainers, or any other dental gear, which I'm super grateful for, as I've since learned that these cause a lot of issues in patients with reaction to metals. 

My own son, when he had braces, had canker sores in his mouth repeatedly, and I'll tell you about that as we get down the road.

As I waltzed into adulthood, aging started to catch up with me. It always will. 

I married an amazing man, that we all call “Saint Walter”, 26 years ago, a few years later, near 9-11, we adopted our son Garrett, and we've been blessed to participate in the miracle of open adoption. Garrett is getting ready to start college later this year. 

We share a quaint cabin in the woods in rural north Texas with two Great Danes, a Bassett Hound, geese, ducks, chickens, sheep, and horses. It's our own little corner of paradise. We're active in our church. We love to travel, especially in the mountains or cruising, and I sing in the Dallas Millennial Choirs and Orchestra, along with enjoying a full-time career as a super busy real estate agent. I'm super blessed with that!

My surgical history began in about 2000 not long after I got married to my dear husband. Somehow I herniated a disc in my low back at L5/S1 while I was readying myself for a barrel race, and we would come to find out in the acute setting, and moreover time, that the problem really extended beyond my lumbar spine into my pelvis.

I spent about a year mostly in bed, trying to get the proper diagnosis and round up the right treatment. Conservative treatment didn't really work. Ultimately, I would fly to California for a microdiscectomy and cold laser treatment to heal up annular tears inside my disc at herniations that were located at the L5/S1 vertebrae. 

The surgery went well, but upon arriving home, I still had a ton of trouble in my pelvis with what I now know to be my SI joints. We tried medication and radio frequency ablations at the sacral nerves. Eventually I was able to return to full functioning, but that was a really rough ride. 

Things were good after that for close to eight years, but in 2009, after a pretty good bout with numbness, tingling, and weakness in my hands, I found out that I would need a cervical fusion for a damaged spinal disc. I had many episodes of whiplash during all the adventures and accidents, so it really didn't seem too out of the ordinary that my cervical spine was damaged.

I underwent all the normal amounts of testing and conservative treatments, after which the surgeon recommended a cervical fusion. So I saw a lot of spine docs, but never really found the right fit until a close friend of my mom's recommended a surgeon that they were super close with from their church.

This doctor was critically acclaimed and he was a clinical trial doc along with being one of the spine docs for the US ski team. I'm so in with that! He specialized in minimally-invasive surgery and really went the extra mile to not gaslight me, to understand me and to just really try to get me better.

I was pretty nervous before this major surgery. I mean, it is my neck and I specifically remember telling him something like, Hey, I've had allergies to jewelry my entire life. Do I need to worry about any of the metal you're putting in my body? He firmly answered no and figuring that he knew better than me.

I went down the road. That surgery was successful. It resolved the symptoms in my arms and hands, and I returned to some degree of normalcy. Somewhere during the years that followed, I had another car accident and I would need surgery to correct tennis elbow, even though I didn't ever play tennis, it did seem kind of strange looking back that so many of the conditions that only needed surgical repair in a small subset of people usually were required for me in identical circumstances.

This was kind of another clue that I would be able to knit into the whole picture. Over a decade later. In 2007, I started having trouble with my thyroid levels, and in 2012 would have my thyroid surgically removed. It was supposed to be the size of my thumb and it was the size of my hand.

Thankfully, the surgeon that removed my thyroid did so leaving no metal or foreign bodies behind. He did leave some surgicell, which is a mesh to assist in healing, which I had a really strong kind of allergic reaction to. That reaction was actually related to metal. We'll discuss why a little later as I get down the road with this story. The doctor had never seen anyone allergic to surgicell before and rarely, if ever, since, because I actually talked to him like last year.I now know some horror stories regarding doctors that used metal clips to ligate blood vessels. During this surgery, it's actually fairly common. 

It was in 2014 that all the fun really started. In January of 2014, I suddenly developed a large, painful ovarian cyst. Being faced with surgery before, again, I sought out the most local recommended physician for the specialty. He was holistic and forward thinking, and he had a great bedside manner. He agreed to take out the cyst, no problem, but also because I was no longer of childbearing ears, he suggested that I allow him to remove my uterus, as well as a remaining damaged fallopian tube.I wasn't using them.

My spouse and I decided becoming pregnant was still not a good idea for us…I had an elevated risk of an ectopic pregnancy, so it was just kind of a no-brainer. Thankfully, this doctor used no metal anything in this surgery either, but he actually did set off a firestorm.                                                                                                                                

Stay with me. 

A few weeks after my recovery from the hysterectomy I set off on a power walk close to my home with my 130 pound Great Dane named Chip. Chip is a big boy, saw the neighbor's dog, got excited and lunged to run, pulling me flat on my face. This simple fall turned out to be not simple at all. It set off a cascade of symptoms and sent me into a spiral that I would not pull out of for eight years, to be exact.

I assure you the history's all pretty relevant, so keep hanging on. I had an abnormal amount of pain from the fall with the dog, but also during this time, I was having some hormonal issues caused by the hysterectomy and the ovary that they left, which decided not to wake up pretty much now. I had no estrogen challenging, but made more challenging by the fact that I also had no thyroid.

So the story here is that estrogen binds thyroid hormone, and when the estrogen was removed, I wound up with too much thyroid hormone and literally went physically and mentally nuts. Doctors couldn't figure this one out either. So guess who did? That's right. Yours truly. I took a month or so to recover from that and we finally figured out that the problem was chemical and that I wasn't, in fact, crazier than I had ever been. 

It was during this time that my lumbar spine began presenting more and more issues. What followed at this point was testing and injections and appointments…all the insurance company hoops…until the diagnosis was sure, and it was determined that I would require lumbar fusion surgery. 

The amazing thing is that prior to this surgery, with absolute sheer determination, I took a month long bucket-list trip to Germany, Switzerland, and Austria to see castles and eat chocolate and fondue— that did not do my girlish figure any favors!

I had to lay down at least half of every day, including on the floor of the plane at my family's feet, on the way over the ocean. I managed to make the rest work by wearing three large, 12 hour lidocaine patches daily. That's a lot y’all! 

I was able to hike up to regal ice caves, to wander German castles, to go down, slides in the Austrian salt mines and stroll the picturesque Swiss villages for more time than I can even imagine now that was possible. 

Where there's a will there is totally a way. I suppose the best was hiking the hills high above Zermatt, with postcard views of the Matterhorn. On a blue-sky day, we met friends on the trail and hiked until my legs would literally not go anymore. It was right at this time that we found a restaurant called “Chez Vrony” with seating that reclined.What?! Like I'm talking zero gravity! 

Remember that I could barely sit and I couldn't stand very well, but I could lay down. So by some stroke of luck, we're able to score a reservation at the spur of the moment at this restaurant where they're like normally sold out for six months. We sat out there on this patio, with a view through the restaurant's framed entrance of the Matterhorn, and ate the best fondue with the best company.It was truly a bucket list experience, and I honestly cannot tell you how I did it. 

When I look back, when I returned, the same doctor that performed my cervical fusion in 2009 also performed my 365 degree lumbar fusion. He had all the newest technologies and even used stem cells in my surgery. It was the most painful surgery I have ever had, but after I got past the initial first week, I kind of got better by leaps and bounds pretty quick. I felt I was super fortunate to have one of the best surgeons in the world with all the latest and greatest progressive techniques. I pretty much considered myself way above the curve and just went quickly down the road. That particular surgery would implant 13 pieces of metal hardware into my lumbar spine between the front and the back. 

Somewhere between the fall with my dog and going to Europe I had reached back between my car seat, kinda like that, and picked up something super heavy. It was a pretty awkward angle, and I heard something tear in front of my shoulder.

Imaging would concur that I did in fact tear something. I was able to get an injection to calm it down, but it really didn't solve the problem, and it was determined that I would need a surgery to my shoulder to repair some of those tears. Technically, the surgery was called a biceps tenodesis and a subchromial decompression of the AC joint.

This was the same year as my lumbar fusion surgery, just a couple months later, and this would be surgery number three for the year. I didn't know it at the time, but during this surgery they would insert a small metal clip just above my biceps muscle, I believe it was to anchor a tendon. I recovered well from the surgery ultimately, but it was pretty painful and the one thing we weren't able to figure out until much later.

Is that why just above my bicep tendon, I was not only numb, but I had a crazy amount of pain? Many days, at least for six months post-op, it would affect me to the point that I couldn't lift my arm. My surgeon thought that it was super strange and never really had an answer for it. Of course, I was a unicorn! Nobody else ever had this kind of trouble, just me. Of course, it was just me. 

In August, 2015, I started having severe GI pain. This was unfamiliar to me and not something I had ever dealt with in the past. We thought it was my gallbladder, and as a result, had my gallbladder removed. Come to find out some number of months later, the pain had nothing to do with my gallbladder. It was being caused by a supplement that I was taking that I was super sensitive to. It turns out that I don't tolerate supplements that use a pathway in the body called the sulfur pathway. Apparently this is really common.

In reality, this wound up being a surgery that I didn't need to have. During the gallbladder surgery. Unbeknownst to me, they left three metal hemoclips at the cystic bile duct stump. This is routine practice during cholecystectomy, and most times, the patients are never told about the foreign body that was left inside them.

My pain continued for months after the surgery until somebody made a totally random connection with the supplement. I quit taking the supplement… the symptoms went away completely overnight. I wouldn't learn about the clips left inside me until 2021, which was six years later. 

Somewhere around the end of 2015, I started having neck pain again, I don't remember the specific symptoms, but again I go back to my same spine doc again. I go through the series of imaging and injections and ultimately decided that I needed a second fusion at C6/7, which is below the first one. Again, hyper-mobility was blamed, of the spine segment, and I wound up having that surgery in December, 2015.

Again, in a reasonable amount of time, I seemed to recover from the symptoms I was having prior to the surgery. It seemed to indicate the surgery was needed, but here's where it starts to come to a head and get real interesting. So by now the little numb area in my right shoulder was a little better and it only acted up on certain days.

So it's now the summer of 2016 and clear outta left field I started having severe insomnia. I didn't think anything about it for the first week or so. I'm a pretty good sleeper, so I would just take some NyQuil….some melatonin…and just didn't sleep very well. I chalked it up to old age or maybe to hormones. I didn't know what, but it was really becoming a factor that would actually grow worse over the months that followed and persist for years. 

Following the insomnia in the last quarter of 2016, again, completely out of the blue, I started having really severe neck pain with no provocation. I had to actually make an emergency appointment to go back to my surgeon because I was having unrelenting cramping, stabbing, and shooting pains in my neck down between my shoulder blades.

I couldn't handle the weight of my head on my spine for more than a few short hours of any given day. My surgeon thought that I had a non-union of my fusion and sent me for an emergency CT scan, everything would come back completely normal. It wasn't normal. I tried everything.

I tried ice, heat, rest, acupuncture, PRP injections, stem cell injections, and nothing almost would relieve the incessant pain. I wound up having to wear a hard neck brace for six months for at least half of every day. 

We wouldn't have an explanation for this either for almost several years I didn't know what else to do, but to function with the neck brace, at least I could function that way. I kind of had to get over people looking at me and being self-conscious because it was literally the only way I could get through life for so long.

I started having trouble walking also at the end of 2016 with a lot of focused pain at my knee. After some imaging, it was determined that I had some kind of strange bone growth on the inside of my knee, just like a little ball. Surgeon removed that…no metal inserted. We're still kind of unsure what caused that.It was just another weird thing that developed randomly without much of an explanation. 

It was around this time that I started having some pretty significant pain in my pelvic area. Ultimately, it was my SI joints, but we wouldn't figure this out for several years either. 

I started physical therapy and after some provocative testing at my first appointment, I had some kind of really major flare that nobody could explain. This time it was my thighs that had cramping and shooting pains, and my legs felt like literally they weighed 3000 pounds. If I walked or sat hardly at all, I would get pains that would almost send me to the emergency room.

So first it was my neck that went and now it was my legs. I legitimately told my husband that I seriously thought something was eating my body a little bit at a time. I went to the emergency room several times in really uncontrollable pain, and every single time they could find nothing at all. And my testing was completely normal.I'm an intelligent girl and I started to feel like I was going completely insane. 

Every doctor and nurse looked at me like I was crazy. I knew I wasn't crazy. I couldn't take most pain medications, so pretty much just had to live with the pain that was pretty much a nine or 10 outta 10 all day, every day.

Couldn't sleep almost at all at this point, and literally could barely walk five feet. I could get myself to the bathroom and back to the bed, and that was about it. Literally, there was no explanation. Oh, and when I stood up, my heart rate would rise to 130 beats per minute. Within five minutes of standing, no exertion…we’re talking just doing the dishes. My resting heart rate was well over a hundred super comfortable-NOT!

Doctors told me that I was just stressed or I was anxious. I was having about 40 PVCs, which are heart palpations, per minute. I remember I made my sweet husband take me in the middle of the night one night to a major hospital that was about an hour and a half away, and I remember screaming in the ER out of pain.

This is a hospital that was known for their work with nerve issues. Figured this is what I need at this point since couldn't figure out what else was going on. They put me through a bunch of rigorous testing after admitting me, but again, everything came back spot-on normal. They wouldn't find anything.

By this point, I'm not sleeping at all. We're talking maybe 30 minutes out of every 24 hours. I was completely wired for no reason-none with an explanation anyway. I couldn't walk and nobody could explain it mechanically. I could walk, but I couldn't tolerate walking without all my muscles seizing. I had burning sensations, especially inside my brain.

I don't know how else to describe it. I was having what I called “brain zaps”, or what felt like little mini-seizures. I felt like I had electricity running through my body from head to toe. They did MRI’s, CT scans, spinal taps, where they removed and analyzed my CSF, which is my cerebral spinal fluid.

Ultimately they would discharge me because every single thing came back normal. You can’t imagine the despair when, a little bit at a time, your whole body is completely shutting down, and on paper you look like you're completely normal. No wonder everybody thought I was crazy!

We don't get to the metal allergy diagnosis for several years, and there's still a little bit of a story between here and there, but every detail I'm telling you is completely relevant and you are gonna be amazed to see how this all comes together. So please keep hanging out.

From well before I was ill, I had an amazing doctor who I say is the closest thing to a spiritual experience I've ever had at a doctor's office. He runs a holistic wellness clinic and spent so many hours with me during this time over so many months. His clinic was two hours away from my home and literally the only way I could get there was to have a friend who's a retired nurse drive me laying down on the floor of my car.

This is pretty much how I was transported through my life for several years because it was the only way I could get anywhere. Talk about humiliating and what a sacrifice for my sweet friends. I had to depend on everybody but myself for so long, and that was not at all how I was raised or how I function as a type-A personality. I was determined to live somehow, so they're just like literally had to be an answer. 

My driver would for real carry a cot into the practice for me, where I had spent many days hooked up to this or that IV because I couldn't sit or stand. I called it my throne. 

I would eat my food laying on this, or the floor, for the same reason I even rehearsed laying down for years with my choir-and on performance dates in really large performance venues. They even kept a cot for me just off the risers backstage so I could get on and off quickly and back to a position I was comfortable.

What a blessing that was. It saved me during those years,

I had to buy two seats in movie theaters just to tolerate a movie and had to lay completely flat pretty quickly. 

Within a few weeks this amazing doctor diagnosed me with Lyme Disease. It was an accurate diagnosis, in part, at the time. 

Lyme is a clinical diagnosis based on a conglomeration of symptoms. Testing in the US is completely inaccurate. There are over a hundred strands of Lyme and the primary labs here, Quest and LabCorp, test for three. That's why most patients with Lyme have a negative Lyme test. There are labs that specialize in tick testing that are more reliable, but still not perfect, and many doctors don't know of them or know how to use them.

For so many years, we thought it was just Lyme Disease and started doing everything we could to aggressively treat it. 

It's very difficult to treat Lyme because when you kill the bacteria, they give off toxins that make all the original symptoms worse, called a “Herxheimer reaction” or herx” for short. 

In the Lyme community, you can't just treat Lyme in a few short days or weeks and have it go away. It's really difficult to tolerate the treatment, and many patients treat their Lyme their whole lives to only get marginally better.

I tried PICC line antibiotics, essential oils, herbs, infrared saunas, ozone, and finally settled on what worked best for me, which was a rife machine. But more on that in another episode, once I had a doctor tell me that if he had to choose between Lyme and cancer, he would choose cancer because it was easier to treat. I'm thinking he's not wrong. although I haven't had cancer and I hope not to, 

Lyme usually doesn't come alone either. Patients that are infected are usually co-infected with three to six additional bacterium and chronic viruses many times more. The other difficult thing about Lyme is that the medical community, by-and-large doesn't know how to recognize or treat it, and so they deny and ignore it.

Most patients are left diagnosing themselves and footing really expensive bills for treatment by themselves…f they can afford to do that. Many can't. Many are too sick to figure it out, and even if they could, they tragically wind up dying by suicide. Lyme disease is one of the great worldwide tragedies.

The closest thing that I can compare it to would be like trying to diagnose and treat yourself for cancer. Lyme can lay dormant in the body until it's triggered by an event that lowers the immune system such as a metal allergy or a trauma or a severe illness. The story of Lyme does have a place within the story of metal allergies. At some point, it's likely gonna be a podcast episode, but pretty much once the immune system is compromised, it makes a perfect breeding ground for Lyme and co-infections to flourish, as well as a whole host of other chronic viruses and syndromes. Our bodies were totally designed to heal, but when the immune system is completely overwhelmed, it just can't do that. So a lot of things happen while it's down, and Lyme happened to me. 

So going back to treatment, I was treating my Lyme regularly and was getting somewhat better. Maybe 20%, 30%. It's probably worth mentioning that during this time I was doing a lot to treat my Lyme with essential oils, taking a certain line of essential oils internally and frequently every day. One of the oils I was taking was called “Thieves” or “OnGuard”. 

Suddenly, outta nowhere, I broke out in hives all over my face and I went from taking it four times a day for like seven or eight months, to not ever being able to touch it again without this kind of reaction…and many other essential oils.

Just another pathway in my body shutting down-pretty discouraging! Almost everything I'm trying to do to help it during those days turned against me. 

There was a reason for this that was also related to metal. We'll get there. 

I also had a great pain management doctor that kept me going with injections and compassion, but we were still looking for answers.

There still had to be an answer for why I couldn't walk. Every time I tried, I would get these stabbing shooting pains down my thighs and wind up in bed for weeks on end. Same old story. Everything looks normal on my imaging and testing. Nobody's ever heard of what's happening to me happening to anybody else.

So my pain management doctor starting to suspect I was having trouble with my SI joints, which are joints on either side of the pelvis below my lumbar fusion. Many times when you fuse a segment of the spine, the segments above it and below it can become hyper-mobile. This causes all kinds of pain and symptoms and SI joint pain.

Treatment is controversial and relatively new in the world of spinal surgery. Many doctors were not trained. To look at pain that originated in the SI joints. And until recently, there haven't been treatments that have worked to address the pain, even if the diagnosis was entertained. My pain management doctor had a relationship with a clinical trial doctor that specialized in a new surgery to fixate the SI joints in the pelvis.

Many patients that had tried and failed at other therapies were getting a lot of pain resolution with this type of surgery. This was something we definitely needed to explore!

So I go to see the surgeon, I get the tests, and it was determined, of course, that I'm pretty much a slam dunk for SI joint surgery.

The surgeon said usually when they do one side, they don't need to do the other because doing the one side often stabilizes both sides. So I thought that was pretty good news.

Doing the one side supposedly worked in about 90% of cases, so I'm thinking this is pretty good odds. I talked to a few patients who had their SI joints fused prior, and they were able to get completely back to what had been their prior mobility. Most of them did not have regrets about the surgery and said it was fairly well tolerated.

So I was pretty sure at this point that this was the answer that I was looking for in January, 2020. Right at the start of covid, I had my right SI joint fused. This surgery required me to stay off the affected leg for two to three weeks, requiring the use of a walker. I could tell that I was improved immediately following the surgery as I was able to sit almost all day. Prior to surgery, by comparison, I hadn't been able to sit almost at all. 

As the recovery progressed, I was increasingly able to bear weight on that leg and pretty much able to stand much, much longer than I was able to before my surgery. So initially, the surgery seemed like a slam dunk. Mechanically I was way better and no longer really confined to bed. 

A few weeks after I started weight-bearing, I started trying to walk again. I started with a walk up my driveway to the mailbox, and this walk is about an eighth of a mile round trip. Because I used to be so active prior to my surgery and I was convinced that this surgery was the rest of the story to end the mobility issues, I set a goal to begin to walk every day. 

At the end of day one, I was pretty sore, but I'm recovering from surgery, so I just thought that this is a normal part of the process. At the end of my walk on the second day, within 30 minutes, I had severe pain that literally put me back in the bed.

In the days to come, I would consult with my surgeon who was pretty convinced that if it continued to be painful, I’d need to have the other side done as well—Of course. Here’s where it all starts to come together and make sense. 

Though I was mechanically better from the surgery, I was physically worse. I had more pain and mild flu-like symptoms, more joint pain, more food sensitivities. I had more seasonal allergies and just thought perhaps I had a virus. 

This is about the time covid started, so I thought maybe I had long covid, even though I don't think I ever had covid. I just…I didn't know. . I kept forging ahead because by now I had learned how to deal with pain day in and day out. It was a sad reality, but it was what it was. I had two options, quit or continue, and believe me, I thought about quitting more than once. I wish I could say that the pain got better as I recovered, but it didn't, and after months of it not changing, my surgeon and I determined the best course of action was to fuse the other side of my pelvis as well.

I did get a ton of relief from the first surgery, so there was no indication at that time that we weren't moving in the right direction to get me back up and mobile again. In July, 2020, we fused the left SI joint. This surgery was much like the right side in terms of the procedure and in terms of the recovery.

The surgery went as planned and my recovery afterward was about the same. It was at this juncture that something pivotal happened that would change the course of my life: I started having a tremendous amount of systemic pain about two weeks after surgery. Instead of continuing the trajectory to get better as I had been doing now for years with Lyme, I literally was just going downhill as far as pain went, completely moving in the wrong direction.

Every single cell…fiber…muscle in my entire being hurt from head to toe. You cannot imagine that a body can hold that much pain! I noticed now that I really couldn't eat any high histamine foods without breaking out in hives and having even more severe systemic pain. 

In the hours and days that followed, particularly painful-and this was new-were the joints in my fingers. The joints were red and swollen, and if I ever hit my hand on anything, even lightly, it was absolutely excruciating. On the days that the pollen was extremely high outside, which is really common where I live in Texas, everything was so much worse. I could hardly move.

It was right at this juncture that I was starting to notice that I was having a major histamine problem. Within days of this realization, something else happened: I put on a piece of jewelry that I had worn for more than 20 years without any issue. The minute it touched my skin, I broke out in a huge welty rash and I also had a metal taste in my mouth-clear outta nowhere.

It was right then that the light bulb went off, and I had the biggest epiphany of my entire life. My brain just went round and round. I was thinking “more pollen, more pain…high histamine food, more pain. Histamine equals pain?!?! Why now? What's changed? More metal!

In that second, I was filled with dread. I knew in that moment that I was allergic to my metal hardware. I was as sure of it as I am sure of my name. This was the elusive “why".