EP02 - Metal Allergy Symptoms Resolved! Overcoming a Life Sentence of Chronic Pain

I felt like I had been sucker punched. What do I do now that I've just had both sides of my pelvis fused with metal I can't remove? 

At this point, I am pretty much thinking that I must be allergic to titanium. I had a full blown meltdown . I thought it was gonna be a life sentence and not one I would be able to bear.

I had brought my sensitivity to earrings up with my surgeons in the past. Even the surgeon who fused my SI joints. With the super low nickel content, he didn't seem to think it would affect anything that he was doing. I even went so far, before that surgery, as to contact the company that made the SI joint fusion hardware to find out the metal composition of the implants prior to implantation. When I got the documentation back, I saw that the nickel was less than one 10,000th of 1%, so I really lost the anxiety regarding the nickel in the implants. 

There was no way that I thought I would react to nickel in that small a percentage. Clearly I was dead wrong. 

My pain management doctor, my surgeon and I were continuing to try to work through my leg and pelvic pain while trying to sort everything out.

I had two smaller procedures on my SI joints, called augmentations, and they all helped. 

It's important to mention here that even though my SI joint surgeon knew about and supported the hypothesis of metal allergy, when we were discussing the possibility of the augmentations, originally, he was gonna perform those surgeries by adding a small piece of metal into the joint.

It wasn't front and center in my chart or both that I had this sensitivity suspected to metal. 

You'll come to learn that every surgeon, assistant and procedure has to be quadruple checked and more to prevent implantation of more metal if you're sensitive. 

I had some pain procedures, some radiofrequency ablations and miscellaneous injections to my tailbone, my low back and surrounding areas. Some helped, some didn't.

It was during one of these visits, pretty much occurring with my epiphany, that my pain management doctor became acutely aware that he could not even lightly touch over where my lumbar spine hardware was. 

It almost felt like we were grasping at straws regarding the pain that I had, but this was the kind of pain management doctor that really cares deeply and is invested in his patients—even calling them at home to check on them. 

When coupled with the additional systemic inflammation, which was worse after the recent SI, joint fusion surgeries, he brought up the potential of a metal allergy to my hardware. When he brought that to the table, he strongly encouraged me to gather more information and get testing if possible. 

It was a sliver of hope offered for a better quality of life, so I jumped on it immediately because who wouldn't? 

The first thing I did now that this hypothesis was gaining traction was to call my BFF. She had just gone through a bout with metal toxicity in regards to a hip replacement. She mentioned that while undergoing her ordeal that she had undergone a blood test while they were trying to prove it.

I don't remember honestly if she was the one to give me the name or if wildly Googling had something to do with it, but I turned up Orthopedic Analysis, a company located in Chicago, Illinois, in my search. 

Orthopedic Analysis is one of two companies that do LTT testing, which stands for Lymphocyte Transformation Testing. 

The other company, MELISA Diagnostics, is located in Europe and processes testing from all over the world, including the USA.

Both of them provide testing for metal allergies. They provide metal ion detection, dental panels, and MELISA is one of the front runners in providing reliable Lyme Disease testing. 

Basically, the way that the LTT testing works is that the blood sample is exposed to a variety of metals over a period of days and then from there, the cell proliferation, or immune response, is measured on a scale of reactivity. 

The downside of these tests is that they are not the standard of care in the US and this super valuable resource is not covered by insurance. That means, sadly, that they are a little pricey. 

Nevertheless, I ordered a test kit and made an appointment to see a specialized allergist to get the lab requisition signed.

It does bear mentioning that any regular practitioner can sign off on the lab order. Although many doctors and surgeons don't know these tests even exist. The tests are clinically validated and I was really excited to try to find out some answers. 

Also on my excitement list was that I had found a doctor that I just knew was going to provide a lot of answers that I had been missing. I mentioned early on that she was fellowship trained in allergy, immunology and rheumatology. She was also a board certified Internal Medicine doctor. 

Those were all the specialties that were really in play here and relevant, and I was really stoked that I found them in one doctor. It turned out to be one of the most disappointing medical visits that I have ever experienced. 

When I went to see her, she told me she had no idea what was wrong with me, but that it couldn't be metal allergies. She was completely dismissive of my experience and said I didn't have any of the signs or symptoms pointing to metal, despite what I thought was a total mountain of anecdotal evidence. 

She didn't wanna sign off on the lab requisition because she didn't believe in the testing, despite the fact that I had brought into the office all the clinical studies— peer reviewed clinical studies—which is what doctors supposedly pay attention to.

These were downloaded from the testing company's website and she just pretty much aloofly said, “I have read them all”, which was impossible because at the time some of those studies were brand new. She stated the test could be positive one day and negative the next, and that she didn't like it, but since I drove such a long way, she would at least sign the form authorizing the test.

She clearly didn't understand how the testing works— cuz either your cells proliferate or they don’t—so I walked out the door and vowed never to see her again. 

Thankfully, Orthopedic Analysis emailed me my results and I didn't need to go back to her for anything. 

When I received my results, they were overwhelmingly positive, in the moderate category, for allergies to nickel and mildly positive for allergies to molybdenum and iron.

Thankfully, I was not presenting with an allergy to titanium, which had been my worst fear, and the metal I had the most of in my body. 

It probably does bear mentioning that nobody told me that I needed to come off the allergy medicine prior to taking the test. I was on a pretty strong amount: Allegra two to three times a day, hydroxyzine and occasionally DayQuil in addition to low-dose Naltrexone, which I have heard can skew the results—but I still tested that high, so I can only imagine what the results would've been if I had been off that medication.

From here, the tedious work began of calling all the medical centers and surgeons offices to obtain my operative reports and implant logs from my surgery. 

Once I received them, I began to reach out to the manufacturer of those pieces of hardware and corresponded with them to get the chemical compositions of each piece right down to every screw and washer.You can imagine that took a little time. 

In the meantime, I went and saw the number one rheumatologist in the whole North Texas area. He was wonderful and ran a lot of testing, but didn't really seem to know much about the metal allergy theory. He didn't tell me I was crazy or that it was impossible, but he was really more focused on the rheumatology spectrum.

I did have blood work that came back showing me mildly positive for lupus but I think he said it wasn't super accurate regarding that particular blood test that I did have. 

As I got the material composition back from the manufacturers, it was revealed that within my hardware I had a combined total of 7to 8% of material that I was allergic to.

Much of it was located within a cobalt/chrome alloy that comprised a lot of my lumbar fusion hardware. Interestingly enough, the nickel contained in those pieces was only 1%. I have since learned that small percentages of nickel—even extremely small percentages—are enough to cause the widespread symptoms that I was experiencing. Clearly, the less than one 10,000th of 1% in my SI joint fusion hardware is what put me over the edge, so my body noticed it. 

The lumbar hardware was the first place to look because the inflammation in my legs and at the base of my lumbar spine over my hardware was so great. I first called my original spine surgeon and had a tele-med appointment with him.

He thinks I'm semi-crazy at this point, and despite the results of the blood test, highly recommended against me having my hardware removed. He wouldn't be able to do it for several months anyway, so we just kind of tabled the conversation. 

My next stop was to talk to the neurosurgeon that did my SI joint surgeries. He fully believed in the metal allergy and that it was likely causing significant issues within my body. He offered to take it out the next week. He didn't feel like it was a super risky procedure and thought that it was likely a really good idea. He said it wasn't a big deal surgery, so I was totally onboard.

He might have said it wasn't a big deal surgery, but can I tell you that there is nothing like having your back muscles sliced open?! It was as painful as the original fusion, which totally caught me off guard, and I wound up in bed with mad pain for several weeks. 

As soon as I came out of the fog, I noticed something pretty miraculous, and that was that all of the sudden I could eat higher histamine foods again! The swelling in my fingers went down immediately. The outdoor pollen didn't bother me quite as much and…wait for it…60% of the pain I had prior to the surgery in my legs was gone. It was absolutely a modern miracle. The thing that let me know that it wasn't in my head after all, was that from that moment after surgery, I was able to wear jewelry again.So now we're getting answers!

I don't think that I mentioned that prior to my surgery, I had bloodwork drawn. Part of that lab panel measured my histamine. At that time my histamine levels were off the chart. Anything over 1 was considered high. My plasma histamine level then was 3.53. We re-drew those labs approximately 10 weeks after my surgery and with no change in diet, outdoor pollen or medication, my histamine plasma level was now measuring 0.16. If that isn't evidence that I was wildly allergic to the metal inside my body, I don't know what was. 

So it was at this point that I left a scathing review online for the arrogant female allergist. I should probably send her a copy of this podcast on a flash drive. 

I'm pretty active on social media and in many Facebook groups, and as you know, the internet shows you what it wants you to see. Well, it's somewhere around this time that I became aware of a Facebook group called “Low Nickel Diet and Lifestyle”. What? There's a low nickel diet??? 

So being true to my nature, I begin to wildly research the low nickel diet. It's here that I find out that almost every single thing I have been eating—stuff they said was good for me—was extremely high in nickel. 

I'd been gluten free for 10 years to lower inflammation. I'm trying to eat paleo… brown rice, mainly vegan, lots of vegetables and nuts and coconut, everything. I noticed that I seemed to be reacting to coconut a few months prior…and pineapple. Every time I would try to eat it, I had some kind of oral allergy reaction. The roof of my mouth would blister and burn like it was on fire. Now, remember before 2014, I would tell you I didn't have an allergy to anything. 

My food was already quite restricted as in 2018. I acquired Alpha Gal Syndrome from two tick bites. That's the tick-borne allergy to red meat that is making the news. I hate ticks!

They don't tell you that the allergy doesn't only include red meat, but pretty much anything sourced from a mammal. It's also a type IV, delayed reactivity reaction. At the time, it took out collagen, dairy immunoglobulins, bone broth from mammal sources….so many of the things that I was trying to do to help myself, and now thanks to this Facebook group, here are more restrictions.

At least I didn't seem to have the anaphylactic version of the syndrome, which is the majority of people that have it. My symptoms were more GI and histamine related, but we tested it and for sure I have Alpha Gal Syndrome. Come to find out that almost every single thing I'm eating is making my condition worse. And guess what? The coconut and pineapple are some of the highest nickel foods on the list. Guess the sudden allergy was not so sudden after all One more sign that I am not in fact, crazy.

Oh, and nuts too. Like nuts from trees. Brown rice…gluten-free grains…oatmeal that I was having every morning for breakfast…What. The. Heck? 

Not only did the group point out that there were dietary concerns, whoever thinks of nickel in food, but environmental factors played heavily into the allergy as well.

Things like stainless steel cookware that I've been cooking with for years because everybody told me non-stick was toxic. The expensive stainless steel water bottles and Berkey water filter that filtered out all the toxins from the water. These were actually, in fact, leaching nickel into my food and water. 

When the histamine bucket is already full, these little exposures are enough to take the allergy over the edge.

Remember that Surgicell from my thyroid surgery that I said was related and the essential oils? They are made from plants. Plants containing nickel. 

Have you ever seen the meme where somebody is on a gluten, dairy, everything free diet, and basically they have a plate of ice cubes in front of them? That was kind of starting to feel like my life. 

So I basically got gluten back, because white flour and white bread is far friendlier to a nickel allergy than gluten-free grains. I stopped eating the problematic stuff. I started eating ice. Just kidding. I started eating stuff that was friendlier toward the allergy.

I switched from stainless steel cookware to ceramic coated. I switched the stainless steel water filter to a plastic filtering pitcher that filters nickel. 

Believe it or not, all these things really started helping, which was another piece of the puzzle to help with my pain and another validation that I was really barking up the right tree.

Finally, it was interesting to learn that this was a type IV delayed hypersensitivity reaction and it was part of what made connecting the dots so difficult initially because when I would eat bad-for-me food or have an exposure, I didn't react until the next day or many hours.

When my surgical hardware was put in, it took three to six months for my body to say, “oh, no, you didn’t!”. Finally, it's literally all starting to make sense at this point. 

I go back to the original spine surgeon-you know the guy that thought I was a little nuts? He’s still thinking I'm crazy, but because we've known each other so long, he's at least willing to hear me out.

I present him with the evidence that showed up after I removed my spinal hardware, and he got to see the lab results before and after the removal. We were having a video visit, but let me tell you that I could almost see the color drain from his face when I told him. “I told you that I reacted to jewelry before the surgery and you said there was nothing I needed to worry about.”

He asked me if they had ever patch tested me for anything prior to surgery, and the answer was no. You know, he's just a person and people make mistakes. I firmly believe in my heart of hearts that he believed what he told me at the time was true. This is what he was taught. It's also part of what's wrong with the medical narrative. 

He wanted to do some immediate imaging of my neck fusion surgeries. When the results of the CT scan came back, it showed that the C6/7 fusion was completely collapsed. The level above it, it turns out, had no hardware in it that I was allergic to, and that had healed completely. The material data sheets revealed that the lower fusion DID contain metal that I was allergic to, and in fact, it had never healed.

So remember that neck brace that I had to wear six months following the second cervical surgery? The one where we couldn't find the cause of all the pain? Inflammation due to metal allergy. 

Now, the pain there had gotten a lot better in the years that followed. My theory is that bone and tissue grew around it, so there was less exposure to the allergen, but that's just a hypothesis at this point that can't be proven. It was collapsed and completely not stable.So clearly it needed to be revised regardless. 

We made plans immediately to do so with hardware that I wasn't allergic to, or should I say less allergic to. They took the metal plate that was out at the level above and did have to put a new plate for support at the level below, so I traded a plate for a plate, but the new plate is actually gonna come out sometime later this year. It's crazy important at this point that I get as much metal out of my body as possible. 

After the surgery, I didn't really notice any immediate improvements, but the portion of metal that I was allergic to in these areas was way smaller than the ones that were located at the site of the lumbar fusion.

I would improve over time as my body corrected its course in recovery, but this also took a while to figure out. 

As I was healing from the surgery I stumbled on yet another Facebook group. I glanced at it out of curiosity, and this is where I found out that they often leave metal clips, staples, and markers inside you without your knowledge during routine procedures. Metal biopsy markers? For real? I had my gallbladder out in 2015. Did I have clips I didn't realize? 

I am one that doesn't believe any of these chance encounters are coincidence. So I of course, start chasing down my OP report for my gallbladder surgery. And guess what? Right there in black and white it said that three clips were left at my cystic bile duct stump. Are. You. Kidding me?

It was also in this group that I learned about galvanic reactions and that dissimilar metals in medical and dental hardware have different ionic charges: Some are positive and some are negative, and apparently evidence has shown that these charges could produce a measurable electric current between them.

Remember that I mentioned that electricity I felt like I had running through my body? More evidence I'm not nuts. That's where the electromagnetic frequency sensitivity came into play. I have so much metal in my body that I react to magnetic fields. 

I bought the cutest Apple watch to wear. Within days I felt like I was plugged into a light socket. When I figured out it was probably the battery in the Apple watch. I took it off and ALL the symptoms went away within 24 hours. 

This is like a Hollywood comedy at this point. I began to laugh because like literally, what good would it do me to cry?

It may seem silly to you to have three little clips taken out when I have such crazy amounts of other metals still in my body, but I knew it didn't need to be there and figured that every little bit I got out would help the galvanic current. As I understand it also speeds up implant degradation, so I certainly didn't need degrading implants in my body that was already fighting.

They don't tell you when they put the stuff in that it actually corrodes. Where do the pieces go when it does that? I had the surgery to remove my gallbladder clips in late 2021. It was not a difficult surgery. I'm not sure the surgeon was convinced that it would make a huge difference, but he was willing to take them out and so I went for it.

I'm sure I'm at like 32 surgeries right now—who’s counting? 

Like my neck.  I didn't really notice anything miraculous here following surgery. I couldn't necessarily eat anything different, and it didn't really change my pain. I just knew it couldn't have hurt to get them out. 

I will tell you that I did notice a tremendous difference six months later. My hair, which had been thin and brittle and wouldn't hold a perm hardly at all, started to come back to a normal consistency. It was soft and full and really curly after a perm, and that was the first thing I noticed. Then I started to notice that when the pollen was high outside, I would maybe have 15% more systemic pain instead of 85% more systemic pain.That was a huge realization. Wow!

So those three little clips coming out in spite of all the other metals made an amazing difference. I was even noticing that I was starting to be overmedicated as far as antihistamines went, so I systematically reduced them as well. While I am still on a ton compared to somebody who's normal, I am on a third of what I used to be on. I’m able to function more and more every single day. 

So what happened to the Lyme Disease? Well, at this point, I believe that prior to the metal, it was held latent in my body, and when my immune system cratered due to the metal reactivity, that allowed Lyme and the insidious co-infections to grab hold. 

My son acquired Lyme Disease from a canoe trip some years earlier in Arkansas. It's not as rare as doctors think either. 

While searching for a treatment for him. A friend that I had also met online told me about a world famous Lyme clinic in Coeur d'Alene, Idaho called LymeStop. They have a podcast regarding their treatment on their website, and I would encourage you to listen to it if you or anyone you know suffers from Lyme. 

Because I have family living in that area, we were going to be up there at a time where I could book my son an appointment due to a non-coincidental cancellation. 

Compared to other Lyme treatments, this treatment was really quick and relatively painless for my son, which is almost unheard of in the Lyme circles. People spend hundreds of thousands of dollars to only mildly improve, as I had personally experienced.

The short version of that long story is that my son underwent LymeStop treatment and made an almost full recovery very quickly. It was almost too good to be true, so then I made myself an appointment for summer of 2021 and received my own LymeStop treatment. I was pretty worried that I would be hyper-sensitive to it as I had been to other therapies and was worried I wouldn't be able to tolerate it.

Not only was I able to tolerate it, but I feel that most of my Lyme symptoms resolved within a VERY short period of time following my visit. So, I can't say enough good things there. 

While it's not super cheap, there are far more expensive Lyme treatments out there. Once you pay and receive the initial treatment, you're usually good to go long-term. 

It was at LymeStop that I was also able to heal my chronic IgM positive Epstein Barr Virus and all the other chronic Lyme infections. The ones they weren't able to work with resolved on their own within a few months of having the gallbladder clips removed, so my body is finally healing as it was meant to.

It was around the same time period that much of the invasive insomnia resolved as well.  

I still have orthopedic problems. In fact, I'm waiting now to have my tailbone amputated. We found out that it's broken at the sacro-coccygeal joint and the severe hyper-mobility there affects how long I can sit and what I can sit on. I can actually feel it moving like a tail. 

The sacral nerves are still super inflamed and that affects my legs, really limits a lot of my walking and exercise. Or should I say what walking or exercise?

The hope is that some of this will resolve with the tailbone surgery. In the meantime, I can sit and stand with care most all day, which means I'm fairly functional.

I can clean my own house. If I do it slowly and I can get from the handicap parking space into the store.

I have an awesome mobility scooter so I can live life when needed and get from point A to point B. I use it when it's a little longer distance or when I travel. I spent so many years trying to die that even though this isn't ideal, I will never take what I'm able to do for granted.

I don't take any pain medication or psych medication except for compounded Low-Dose Naltrexone or LDN. That helps with immune system modulation and blocks the opiate receptor sites. It's not a miracle cure, but every little bit helps. 

The final frontier in the recent past of my recovery was to do limbic system retraining. 

Basically, when you're chronically ill and in chronic pain, it becomes all that your brain pays attention to. The body can get stuck in chronic fight or flight and exhibit a maladaptive stress response. Believe it or not, the brain actually can perpetuate the symptoms that you think you're mentally trying to avoid.

So I had to learn how to train my brain to see pain differently and to train myself out of being chronically ill. I did exercises, meditations, and basically just stopped fighting so hard to get well. I let the hard days come. I let the hard feelings come and I just didn't fight it, and it was then that I felt the energy move.

This actually does take a change in mindset and quite a bit of practice, but "if you build it, they will come” and “as a man thinks, he is”… there really is something to that. I used several tools to retrain my brain. I used a program called the Dynamic Neural Retraining System, or DNRS, which you can find at RetrainingTheBrain.com.

I am a HUGE fan of the work of Dr. Kim D'Eramo from the Institute of Mind Body Medicine. She has a great page on Facebook and a lot of free meditations and some really, really great programs. 

I strongly feel that anybody who is chronically ill must consider making these practices part of their daily routine. I can swear to you that it changes lives. Our brains are so much more powerful than we know! I am truly grateful to the providers who have shown me that.

There are plenty that say that Facebook and social media is a waste of time, but let me tell you that these Facebook groups and some of the friendships that I have made on social media have changed my life and saved my life. They have helped me save and change other lives as I have tried to pay it forward.

I've networked my way to people. People have networked their way to me. One of the associations that came through a Facebook connection was that of Dr. Scott Schroeder. Dr. Schroeder is a podiatrist and foot surgeon. He now lectures professionals in the medical industry worldwide on metal allergies.

The craziest part is that you would think he would have credibility among his own peers, but there are many that don't believe him, and he's a doctor with firsthand experience! 

Because he lives up in the Pacific Northwest, near my brother, my husband and I were able to go out to dinner with he and his wife. We're gonna be teaming up to bring you some really great material as this podcast rolls on. If you look at YouTube, you can see his presentation to the FDA and you will drop your jaw in disbelief at the things he will share.

The craziest thing happened when we went out to dinner with Dr. Schroeder and his wife! I was asking him what food he was most reactionary to, and he told me it was soy. He then added that he could tell within seconds of putting something in his mouth if he was going to react to it. The only person I have ever heard say that in my entire life was my son, who has been throwing up a good portion of his food since he was a baby.

I thought he was allergic to soy, but there were other foods and we never could seem to connect the dots. A light bulb went off in my head during my conversation with Dr. Schroeder and I would come home and tell my son to take all the nickel containing foods out of his diet. 

Guess what? His chronic pain greatly reduced, and he has finally stopped throwing up his food!

He was also allergic to nickel. Dr. Schroeder helped me solve a 20 year mystery with my kiddo! No other doctor or surgeon had been able to figure this out. It also explained another mystery where my son had an old, healed scar that erupted when he got Lyme Disease. Kind of like a boil. We had it froze off at the doctor's office. 

She never really knew what it was, but my son, prior to that, had a blacksmith forge and loved to work with metal. The location of the scar was a place where he had some metal imbed itself years before. Of course, it healed and he didn't think anything else about it. So now we know why the scar erupted: Metal equals inflammation. Mind. Blown. 

So this is the point where I literally had a spiritual epiphany and knew that I needed to launch this podcast. All of the sudden, so many things in my life made perfect sense, from working as a journalist to the stars right outta high school, to my desire and enrollment in college, right before I got sick, to continue into medical school, I literally feel that God and the universe were leading me to this space and time in my life for this very purpose. 

I can't tell you how many random people I meet that are suffering with chronic pain. I dig a little. I find out they've always had jewelry reactions and that they have bodies full of metal. It happens over and over again. It's got to be 50% of the people I know with chronic pain. 

I've been fortunate enough to know some of them before and after their surgeries, and I've watched them make full recoveries when the metal allergy was discovered and the offending metals were removed. I can't be silent anymore. It's too common, and many times it is not even crazy difficult to fix.

Don't get me wrong, there are many people that have metal in their body like me that they can't remove. It's difficult to know. I've developed extreme compassion and empathy for everybody in this situation, including myself. In spite of that fact, I am sure that there are issues that will be discussed on this podcast that will contribute to a better quality of life for even those with the greatest suffering. 

We have to start having a discussion with our doctors, our families, our friends, and all who are around us, because there is always hope, there is always help. 

I just met somebody under dire circumstances. She had decades of severe pelvic pain and was told by multiple doctors, gynecologists, radiologists, that she didn't have any female clips or staples.

She got conflicting information from a different medical provider and had surgery two weeks ago here in Texas and they removed over 130 pieces of metal from her pelvic floor and abdominal area!

Decades of begging for relief and trying to get doctors to listen. She is now pain free with the exception of surgical pain. 

She saw rust on some of those clips that came out of her body. Can you imagine what that was doing inside her body? She now has two forms of cancer. I am trying to get her on the podcast in short order, but the moral of the story is that sadly, there are doctors who lie. The proof has to be on US for our wellness!

As I tell you this, I am currently seeing that same surgeon and triple checking that I don't have clips or staples in my abdomen that nobody has uncovered yet. I found out that the tendon anchor above my biceps tendon is much larger than I thought it was. I was prepared to let that lie, but now I feel an urgency to meet with a surgeon or three and literally see what's involved in getting that removed.

It has been so crazy. I won't even get into my feelings about the companies offering full mouth dental implants, but we can't ignore dental. 

Let me tell you about the woman I know who can't eat due to the unbearable pain from hers….

So where am I today? Well, I still have orthopedic issues, as I mentioned. I was put on medication to control my heart rate and sinus rhythm, which was a little schitzy, due to the metal reactions. So, I feel normal as far as that goes. Normal-ish. 

Remember that I still have a lot of metal in my body that I’m still allergic to, and that can’t be removed. Some of it can. I’m lookin’ forward to that, and I should continue to get better when that happens, but for now, it is what it is. 

I can sit and stand most all day, and I can walk short distances…maybe a combined total of about a mile per day. This is probably due to the tailbone issue and kinda some of the nerves in my pelvis. Nothing to do with having or not having the metal….I just was hard on my body. 

I have significantly less pain in my legs and body, though I do have to control the allergic reaction and inflammation with Allegra and other antihistamines. Some days are better than others. 

My brain doesn’t burn anymore. Cognitively, I think I’m still above average for my age. I would say I get through life well about 90% of the time. 

I can function as a real estate agent and show houses. I can drive myself anywhere I need to go. I can take long trips. I do have a mobility scooter for when I travel for places where you would need to walk a long distance, since that’s not possible. 

I can stand and sing with my choir for performances and I don’t have to lay down off the side of the stage anymore. So hey, it’s not perfect, but its LIGHT YEARS better than what it was. 

The insomnia is pretty much resolved and as long as I follow a low-nickel diet, which has been really significant, I do pretty well. I pay for it when I don’t. For all I’ve been through, I’m just happy to be here, and I will never take a day I wake up for granted. 

What’s important going forward to me is to make sure I keep my medical directives in place, up to date, and VERY specific.

Yes, I have to spell out that there's nickel in stainless steel, because you will not believe how many in the medical profession don't realize that even one clip or one staple can set off a cascade of chronic symptoms that I will NEVER be ready to go back to. 

It is scary to think that I am probably not going to be able to get a new hip or a new knee or a new shoulder if I ever need it. Also, a cardiac stent or a pacemaker. It scares me, spitless, if I think about it. 

Looking back over this incredibly difficult story I've told…thanks for hearing it all the way through by the way…what would I have done differently?

I would have liked to have known what to look for if a reaction was going to occur. I needed the surgeries, but I would've liked the doctors to warn me about what potentials in this area could be and how they might be manifest.They aren't trained in that. 

I still think I needed almost every surgery I ever had, with the exception of my gallbladder surgery. 

It seems pretty easy to say that I wish I would've tested for metal allergies prior to my surgery, but I've learned that the problem with testing ahead of surgery…you’ll find this out…is that you don't often show reactive to a substance until you have the exposure. So it might not have done me any good at all. 

I might have been able to find out earlier in the process and that would've been great, because at least we could have used friendlier hardware at the outset, instead of having to go back for second surgeries to correct the first. 

Did you know that the hardware manufacturers always suggest having the hardware removed when it's no longer needed?

Why is the burden of that expense on the patient? I'm not sure? I have great answers here. I can't go back, so I just go forward. 

So what's next? I need to file my own adverse event reports. I have been so busy correcting, healing and living again that I have not taken the crazy important steps to do that yet. We're gonna learn together how to do that on this podcast. 

We’re gonna learn how to navigate surgical consents so that we know what is getting placed in our bodies and what it's made of.

People ask me if I'm going to sue any of my doctors or if they can sue theirs for leaving metal in them without their knowledge, or if they can sue the clip manufacturers for the huge wreckage to their lives. 

I know people that have done that. A few of 'em have done it successfully, but it's taken them years of hard work and in their opinion, it's usually not worth the time it takes. It's bad energy time that could be spent in other, more rewarding pursuits, in my opinion. 

Tort reform changed the civil justice system and reduced the number of lawsuits and the amount of damages awarded in them. There usually isn't enough money to go around for anyone to make it worth going after those responsible. 

I feel, along with others who have been through lawsuits, that time is better spent on patient advocacy and spreading the word about this horrific problem plaguing the medical industry.That's my story, and I am sticking to it. 

I have heard some real horror stories about doctors. I am blessed that my doctors believe me and support me, but many don't. They won't believe until there are clinical trials to support the evidence, and we need those. I'm gonna be talking to some groundbreaking doctors who are doing those trials.

The vast mountains of anecdotal evidence are apparently not enough. They should be, but they're not. 

I do think we can use them to fan the smoke into a flame. Don't let them tell you. It's rare. 

I can tell you more than one story where a patient has gone back to a doctor. after a literal, miraculous recovery post hardware removal, and the doctors still think it was just a fluke…they’ve gone into remission from whatever they had, or that it's not related. 

I've also heard trivial excuses like, “well, maybe you're just under less stress, or maybe you're just not as anxious anymore”.  

Many people I know experiencing the side effects of metal allergies have master's degrees, medical degrees, doctorate degrees, and they are dismissed and treated like they are cuckoo for Coco Puffs.

This has to stop!

I want to make doctors who listen and doctors who learn the standard. I want to make testing the standard. I want to be a force in improving medical device regulation. 

Incidentally, we will be talking to somebody that works with the FDA in device development. We'll learn about that process too.

I aim to make living with metal allergies better for me, you and those that will come after us. My story matters and my life matters. Your life matters. Stay here with us, learn with us, grow with us, and help us get the word out to save lives. Every life is precious. Every day above ground can be a good day, even when it's hard and borderline impossible.

I know this was a lot. Trust me, it's a lot for me to re-live, but I am just getting started. 

Please stay for the miracle. Together we can improve the quality of life for so many—I’m just one voice. We need MANY voices. 

Please like, share, and subscribe to help share this most vital message.

If you want to see my before, during, and after photos and imaging and test results, there will be a link to those in the show notes on HeavilyMetalled.com. 

We'll also be putting up a great page full of links and resources on the website.

From the bottom of my heart. Thank you for tuning in. 

Now… let's go tell the medical industry ‘We’re not gonna take it anymore’!