“You have lupus, but don’t get too overwhelmed because I think women are living much longer than they used to with new medications that are available. Past their 50’s even.”
These were the doctor’s words that were met with my shock and confusion the day I went in to get the results of my blood work.
The doctor that had ordered the blood work actually ordered an ANA panel initially because I had complained that my eyes and mouth were always dry. Turns out that my physician (my OB/GYN) had recently returned from a conference where she learned about Sjogren’s Syndrome and when I told her of my dryness she replied “I always suspected there was something a little not right with your overall health. I’ve just learned about an autoimmune disorder that I think you may have! We’ll draw some blood and then go from there.” – or something like that, but it was almost 10 years ago, so you get the gist.
I should mention that the doctor who delivered the aforementioned pseudo-grim prognosis was not my normal OB/GYN, who ordered the tests. She wasn’t there that day, so not only was I hearing this bizarre and unexpected news, but I was hearing it from a man I’d never even met before.
He followed-up with, “If you have a family practitioner I recommend taking these results to him.” So I did. My family practitioner drew my blood and re-tested my ANA along with some other confirmatory tests. After other specialists and other tests, the final diagnosis- lupus.
During the days in between the OB/GYN’s diagnosis and my family practitioner’s diagnosis, however, I was afforded what seemed like an overwhelming amount of time to search Google for information about lupus. I also spoke with my parents (I was about 21 years old at the time and in college) who told me something previously unknown to me about my paternal grandmother; she had lupus. My Granny Lou, at the time, was still alive, but in bad shape even for a granny. She was on a TON of medication, she had side effects from all of the medication, and (like me) would have these horrible fits of uncontrollable itchy feeling that she referred to as “being terrorized by the itching”. Boy, did I relate… and now more than ever.
I’ll skip ahead a little here because the years following can be condensed down into a few sentences. I set out to determine the root cause of my lupus, because I did NOT plan on my fate going the way of my Granny Lou’s. This led me to discover I had heavy metal poisoning (which I knew the symptoms of because I also had it as a child, so I had been suspicious that I had an overload of heavy metals again, by this time). I did intravenous chelation for about 4 years, once a week, every week and each chelation visit took 3-4 hours. Sometimes it was very unpleasant and sometimes it was fine. I loved my physician’s assistant like family and grew to love my phlebotomist and fellow “Tuesday Chelators” who were mostly in their 70’s (several of which passed-away over the years that I was chelating with them). I felt a little better after a while, so I stopped only to get worse and have to start again. Then my doctor discovered that I had a polymorphism on my MTHFR gene, and I started taking high-dose methylated B vitamins, prescription MetanX.
But, the real breakthrough came when my hair started falling out.
Fast forward about 6 years and I had moved to South Carolina from Tennessee for my first “big girl” job as a nutritionist, and was living in a condo when my health got A LOT worse. My thyroid was functioning less and less, I kept getting what felt like the flu, my migraines had returned, scaly red spots covered my body from head to toe and itched and burned constantly, I could barely fall asleep at night then barely stay awake during the day, and no matter how or what I ate or how much I worked-out I had gained almost 10lbs and could not lose it.
Meanwhile, one day I decided to try and refurbish a dresser that had come from my Granny Lou’s house after she passed away. Upon opening the drawers for the first time (after having the dresser about 3 feet away from my bed for about 5 months) I saw that the inside was COVERED in mold. I mention this because it’s important. Also, during my domicile in this condo, the washing machine had leaked when the hose fell from its connection to the wall and soaked the entire downstairs which was carpeted. It took days if not weeks to fully dry even with the use of a shop vac.
After 6 months in this condo I switched to a new location within the company and accepted a traveling position which also meant I would move to a new city. I started to improve within a month of being in a new apartment with no moldy dresser and no wet carpet and a new work environment. Months go by and I’d describe my status as thriving- the best health I can ever remember.
Then my hair began falling out. It was terrifying. About ¼ to maybe 1/3 of my hair was gone and the shedding wasn’t showing any signs of letting up. I was almost certain the cause of my hair-loss was related to a mega dose of B5 that I took 3 months prior in an effort to improve my cystic acne (yes, during the best health of my life I still had a ton of minor issues including cystic acne). So I figured, I have a bachelor’s degree in nutrition and chemistry… I can figure this out. I just have to follow B5 through the biochemical pathways to figure out what I upregulated, downregulated and depleted.
Ah-ha! That was what it felt like when I decided to Google MTHFR a little more closely to see if this defect could be playing a role in my B5-induced hair-loss or, even better yet, my lupus. I found a Pandora’s Box of information about single nucleotide polymorphisms (SNP’s, like MTHFR) and their impact on the processing of B vitamins, synthesis of DNA, and their modulatory effects on detoxification capacity.
After 3 months of exploring PubMed for information on methylation pathway defects and playing around with targeted nutrient supplementation, my hair stopped falling out. Some of it even grew back, although not all of it. I got better in other ways, too. I started to feel super human compared to the shotty health I’d come to know as normal throughout my life. My migraines decreased in frequency and severity, my mental energy and IQ felt like they were peaking, and my mood was stable.
This next part is still a bit of mystery for me, but I slowly started to get worse. I was prompted by unresolved digestive issues to take an all bifidobacteria probiotic that ended up causing diarrhea, and after realizing the probiotic was the cause and stopping it, the diarrhea persisted. All of the problems I had in the moldy condo returned. My thyroid functioning was lower, my digestion was awful, adequate energy level gone, focus gone, weight began climbing back up again, skin rashes and migraines returned, and my cycle became irregular once again.
I had already decided I was going to grad school before my health had taken this recent turn for the worse, so I ended up in Florida at one of the nation’s top research universities as a graduate student in Nutrition Science with uncontrollably failing health. Things only got worse from there. I went to University Health Services where the physician ordered another ANA test. Over the years, every new doctor I saw ordered another ANA despite the vast history of positive ones. And every ANA result was more positive at a higher dilution. This time, however, my ANA was negative. WHAT?
Yea… I was in the worst health of my life and my ANA was finally negative. Mind you, all of the “bio-hacking” with diet and targeted nutrient therapy I had been doing over the past year had been aimed at healing my lupus, so I wasn’t sure if I had succeeded or if there was some kind of mistake because I didn’t feel like I was healed. Also, you can imagine how helpful this physician was after me, a complete crazy-pants stranger with 18 different symptoms, telling her I had lupus and then my lupus test coming back negative. Yea… not very.
Months go by and I get a private physician who orders all kinds of new blood work. What we found was that all of my hormones were below reference range. ALL of them. Estrogen, progesterone, testosterone, pregnenolone, DHEA, and thyroid, along with several other biomarkers, were all completely messed up including a high copper/zinc ratio, but low bio-available copper. How did I get to this point? What the hell was going on? All in all, I had chronic diarrhea for about one entire year, so I thought maybe this had some connection. We did hormone replacement creams, anti-microbial treatments for my digestion, and I even started IV chelation again.
Nothing gave me any long-term improvement, although there was something I did on my own that gave me about a month’s reprieve from symptoms.
I knew that I was sensitive to mold, because when I was a child I had been “terrorized by the itching” every time it rained and the mildew behind a bookcase in my bedroom grew back. I suspected mold had been the cause of my worsening of symptoms in the condo. I also suspected that my apartment in Tallahassee had mold, as well as the building at the university where I spent 8-12 hours 5 days a week. So I Googled it and found a protocol to heal mold illness.
During Christmas break, while visiting my parents, I did the protocol which consisted of taking a bile acid sequestrant (Cholestyramine) 4 times daily away from food (I had been prescribed the bile acid sequestrant back in South Carolina since it’s off-label use is for diarrhea, but not being one to take a medication to just fix the symptom instead of finding the root cause, I had decided not to take it back when it was first prescribed). I also ate a hormone-balancing diet void of sugar, grains, and dairy but with 5 cups of vegetables daily.
I was me again… for about a month. Once I went back to my apartment and back to the building where I was doing research for my graduate degree everything slowly began to worsen, again. I became even worse than before Christmas break, and that’s pretty freaking bad. I gained about 20lbs in one month without changing my diet or level of physical activity whatsoever. I was, by this time, emboldened in my conviction that mold had something to do with my health’s decline. I moved apartments, dropped my thesis so that I could minimize my time spent in that environment, and started looking for a doctor that specialized in mold illness.
Long story short, I wasn’t able to find a physician who specialized in mold illness AND who was accepting new patients. I did, however, find some information. At this point I knew in my heart that I had biotoxin illness caused by exposure to mycotoxins produced by mold, and that my autoimmunity was a result of it. I just needed to prove it. I found a list of lab orders published by the leading researcher and physician in biotoxin illness and was able to talk my nurse practitioner into doing some of the testing and lo and behold!!!!! I was right!
The lab work showed that I had a defect in my innate immunity which caused my body to be unable to recognize mycotoxins as a biotoxin and therefore I could not adequately detoxify on my own. About .01% of the healthy population have this unique haplotype, but about 25% of the chronically ill population have this susceptible haplotype. As a result, the mycotoxins were just being recirculated in my bile over and over. And because of my chronic exposure I had developed Chronic Inflammatory Response Syndrome (CIRS) and autoimmunity issues (lupus and guttate psoriasis). The blood work also confirmed neurological inflammation that is a hallmark of CIRS symptoms and leads to developing autoimmune disorders. My NP was also wonderful enough to order a urine mycotoxin analysis, which showed high levels of mycotoxins belonging to the two most pathogenic mold species and most carcinogenic toxins known to man (AKA black mold mycotoxins).
It’s important to make the connection that we are talking about epigenetics at this point. My genes met up with my environment and caused chronic illness. Genes that I inherited from my mother and my father. Genes that they inherited from their mothers and their fathers… Granny Lou… lupus, itching, mold… it’s all coming together now.
What people without chronic illness don’t understand is that this may sound like ravings from a conspiracy theorist, but this is the inconvenient truth. We cannot treat chronic illness the same way in which Western medicine always has and expect to ever see any long-term improvement. We have to move on. We have to dig deep down into the disease pathway and hammer it out over long days and even longer nights. We have to be diligent and a little obsessive if we want to get well.
I’m not well, yet. But I am getting better every day. And as fellow chronic disease sufferers know, there are good days and bad days. What we also know is that you have to gauge your improvement by the number of good days relative to the number of bad days.
My advice to those suffering from chronic illness:
If your illness has a name/a diagnosis, don’t accept that as gospel. Don’t accept the treatments of Western medicine as your only option, or your only hope. Don’t accept that some people just get ill, and others don’t- it’s not just luck of the draw. Don’t accept that your disease is incurable. Don’t accept that your environment can’t be the cause of your illness just because you’re the only one ill from it. And finally, just because something is common does not make it normal!
Why? Your genes carry nuanced differences that when met with environmental variables will be modulated (environment includes what you put into your body too, not just what exists outside of your body). Each individual gene codes for something meaningful whether it’s an enzyme or the size/shape of a receptor site and your DNA can either be constricted or expanded to upregulate or downregulate its enzymatic activity- your gene expression. Your environment is what controls that activity, but your genes determined the impact of that activity on your health.
If I had listened to any of the tens of doctors who were, despite their expertise and good intensions, telling me to take biologics, anti-histamines and steroids I may have ended-up like Granny Lou and millions of other women whose quality of life decreases every day. If I had been discouraged by my friends, family, teachers, bosses, coworkers… you name it… who tried to convince me that I just needed to relax and not get too stressed-out, then I would have not come this far. I certainly would not have ever improved.
That is the fact of the matter.
Without the proper diagnosis and proper intervention I would not have ever improved. Let that sink in, for a minute. Auto-immune disorders are degenerative diseases. Likewise with multiple sclerosis, Parkinson’s, fibromyalgia, chronic fatigue syndrome, and others. These diseases are chronic (life-long) and degenerative (they only get worse without intervention). What else do these chronic degenerative diseases have in common? They’re all (often-times, but not always) either misdiagnosis or caused by biotoxin illness also known as CIRS.
I’ve pieced together most of the puzzle, but I’m not done yet. The story doesn’t end here and I know there is more to be discovered. The exciting thing is that I know I can do it. Everything is going to be ok, and that’s a feeling people with chronic degenerative disease don’t often get the pleasure of knowing. Today, I write this with the feeling that I’ve erased almost an entire year’s worth of worsening symptoms, now. I know that tomorrow I may feel worse, but progress isn’t linear. As long as I keep learning and never stop persisting I will have done my body justice.