Pictured: My mother and I on Christmas Day in our matching dresses that we got a month earlier in Athens, Ga for my birthday. In just one month’s time I went from feeling completely awful and basically bed ridden for a couple of days to feeling amazing. Just one month prior I was reacting to everything in my environment, left and right. I barely even made it through Thanksgiving, and actually had to fly home early on Thanksgiving night. Fast forward to Christmas and I couldn’t have felt better. I had almost forgotten how awesome that feels.
What I’m Doing Now That Is Working
I’ve been feeling a lot better the past couple of weeks. That’s coming off the heels of a really bad set-back over the Thanksgiving holiday. Within one month I was feeling not only like myself, but a healthier than usual version of myself. Since the end of October I have been undergoing an aggressive treatment plan for Chronic Inflammatory Response Syndrome- water damaged building (CIRS-WDB). I’ll get technical here and there for those readers of mine who are also experiencing CIRS and are familiar with the nitty gritty of the various treatment protocols and lab tests. I’ll try to keep the technical stuff to a minimum and explore that in a separate post. This is just going to serve as an overview of what has changed and what is actually moving the needle for me.
The Evolution of My Treatment Protocol
After being seen by Dr. Minkoff’s advanced registered nurse practitioner (ARNP), Jennifer Baer, at Lifeworks Wellness Center in Clearwater, Fl I decided to move forward with the expensive treatment plan she prescribed to me. The grand total was about $12,000 due upfront for a 10% discount or pay out of pocket as you go. About $5,000 of that actually went towards diagnostic testing. Another $1,000 or so would have gone towards having a PICC line placed; however, since my veins have never been a problem I talked the care coordinator into allowing me to forgo the PICC line under the condition that I would be required to have it and required to pay for an attempted IV if the nurse was ever unable to stick me. Another good little chunk of that sum went towards supplements that were prescribed by Jennifer.
The initial consult with Jennifer was truly exactly what I had always wanted from a doctor’s visit. It was self-pay and about $300, but she spent almost 2 hours with me. We did muscle testing that confirmed every single one of my suspicions about my health picture independent of me telling Jennifer. She also retrieved a drop of blood from my finger tip via lancet puncture and mounted it on a slide. She showed me under the microscope (projected onto her computer screen) little parasites flickering away in my blood, sticky blood cells that clumped together, and little flecks of undigested food that had permeated my gut lining (I actually believe what we were seeing was lipopolysaccharide particles, but sort of kind of same difference, I guess).
Everything Jennifer said was really right on the money in terms what I had come up with on my own over the past decade of trying to sort out my health issues virtually almost completely on my own. I was so impressed that I left her office determined to come up with $12,000 within a couple of weeks’ time so that I could get started ASAP.
When I put my mind to achieving a goal, especially related to my health and well-being, there’s no stopping me. I got the money (partly thanks to a sweet friend who loaned more than half of it to me) and started the testing. Their office requires you to finish all of the testing before you can begin treatment, for obvious reasons- you need a quantifiable baseline. There was a urine collection for vitamins and minerals and other metabolites, nasal swap for multi-antibiotic resistant coagulase negative staph (MARCoNS), 3 day stool sample, blood draw for comprehensive metabolic panal, and 4 part saliva collection for hormone level detection. There was also some energetic type testing performed to determine what organ systems in my body were weakest as well as possible food sensitivities.
Once that was done, it was time for 3x/week in-office treatments + a strict supplementation regimen. At home, I was taking things to heal my gut, binders to detox my gut, Bolouke (an enzyme that greatly helps people with Lyme and other biotoxin illnesses), a homeopathic for healing my small intestine, a homeopathic for Epstein Barre Virus (EBV), Monestary of herbs for EBV, and VRM 4 + Wo oil for parasites. I was also instructed to continue the supplements was already taking beforehand which included KappArest, krill oil, Thorne Basic Nutrients III without copper and iron, vitamin k2 as MK-7, l-carnitine, Probiota 12, Perfect Amino among other things that were taken on a less consistent basis.
The in-office treatment consisted of 3x/week intravenous infusion of ozone (two different kinds), Meyer’s Cocktail, and glutathione. I was also sentenced to ozone infused far infrared sauna 30 minutes, 2x/week. Then some allergy elimination and something called the MAS MAT which was a mat that sent electric pulses through my body to try and change the frequency of my cells vibrations to be that of a more healthful and natural state. I reacted poorly to the MAS MAT, and not really at all to the allergy elimination. If you are familiar with CIRS then you already know that our food sensitivities originate from low melanocyte stimulating hormone (MSH) and consequently low vasoactive intestinal peptide (VIP), not blocked meridians as this technique was designed to address.
I consistently did the IV’s and the sauna as well as the at-home supplement regimen for about 6 weeks (give or take the weeks that the office was closed for the holidays and weeks that I was detoxing too hard to make it to my treatments 3x in one week). By Thanksgiving I felt like it was probably not a great idea to travel, but my parents had already booked my flight to Athens, Ga so I felt like it was worth a shot. I picked out an Air BnB for us to stay in and crossed my fingers that is wasn’t moldy (long story short, but my parents’ house may have been one of the things that made me sick in the first place so I’m afraid to return there even after the major remediation they did). A day before the trip I had opened a bag of sweaters that had been packed away from three moves ago (people with CIRS-WDB will know that moving 3 times in year is par for the course). I live in Florida, so I rarely need sweaters, but Georgia is another story. I felt the exposure immediately when I opened that bag, even though I had washed everything in there more than twice in hot water and borax. Some mycotoxins and some fabrics just cannot be remediated, which is why I typically leave everything to be donated or picked over by friends or thrown out when I move. Items that have lived in mold will never be safe for me, again. I washed the sweaters again, twice, in hot water and borax. I still reacted to them. I packed them in my bag even, just out of wishful thinking. The day of my flight I put on one of the sweaters and reacted again, so I begrudgingly admitted defeat and changed clothes then unpacked the other sweaters to leave them behind in a trash bag in the laundry room.
Needless to say, I started that trip out on the wrong foot. The whole trip ended up being one reaction to my environment after another. It was painful to suffer in silence from the first 15 minutes of being in my parents’ car with them all the way up until the second to last day when I couldn’t hold it in anymore. I finally broke down the night before the last night at the Air BnB. I couldn’t sleep all night and just anxiously tossed and turned wrecked with sadness and fear over having to wake up and tell my parents’ that I had a beautiful time with them, but I needed to leave early. They took it well and changed my flight, and we cut our trip short. The following week was hell, though. That’s the worst part about reacting. You feel bad immediately, but you know it’s not even anywhere near as bad as you’re going to feel in the coming days and weeks. There’s a cascade of biological events that take place and 3 days after exposure is when things start to really get bad.
As soon as the doctor’s office opened up after Thanksgiving it was back to the salt mines for me. I diligently attended my IV and sauna sessions, as well as upping my detox protocol at home with Welchol, Cholestyramine, charcoal, clay, modified citrus pectin, and Cholestpure. I threw everything I could at it. A month later I was feeling the same as I did pre-Thanksgiving, which was good, but that still wasn’t where I wanted to be. I was about to travel for Christmas and couldn’t imagine that going well. About a week before my flight out of Tampa for Christmas I started feeling even better, though.
Up until this point I had assumed that some of my other peripheral diagnoses were relatively unimportant in the shadow of CIRS. Mold exposure was the only obvious thing that tanked my health time and time again; therefore, why would I consider anything else as integral to me healing? I had pretty much always known that my mom and I have Ehler’s Danlos Syndrome (EDS), but my mom’s diagnosis was shaky, at best, and not from a geneticist. My self-diagnosis was based off of her shaky, unofficial diagnosis. We are very “bendy” people and we always get random injuries that never heal and we can’t always pinpoint where they came from or even when they occurred. I swear I have a stretched ligament from when I was 10 years old that never healed, despite physical therapy. I’ve rolled my ankles and sprained my wrists several times. When I taught more than 1x/week barre, my back was always getting messed up and the chiropractor only made it worse.
I had an MRI, back in September, to determine the extent of the neurological damage and the etiology of it. The MRI technician used NeuroQuant software to determine that my areas of atrophy and hypertrophy were an 8/8 match for damaged caused by mycotoxin exposure. I had 0 indications of damage caused by Lyme disease, therefore pretty much ruling out Lyme as a comorbidity (later when Jennifer muscle tested me for Lyme I was also negative, not to mention I had a negative Western Blot two years ago, as well). The technician ran a separate MRI with contrast to also rule out multiple sclerosis (MS), since the symptoms for CIRS and MS are identical. The contrast MRI did show something, but not MS- Chiari Malformation.
At the time Chiari seemed like the least of my problems, especially considering the only treatment is BRAIN SURGERY. Uh… hard pass. I went about treating CIRS aggressively. After 6-ish weeks, though, I wasn’t feeling as well as I felt like I should have been. I had treated parasites, EBV, ozoned the crap out of blood and skin, and through intermittent fasting had lost fat and gained muscle. It was time to investigate what could be holding me back, still. Chiari came back to my mind as did EDS. I googled a treatment for EDS and came up with fractionated aloe vera juice. I also requested Jennifer order and upright MRI to confirm Chiari, since the kind of MRI I had in October cannot actually be used to diagnose Chiari. I had the upright MRI and it was confirmed that I have Chiari type 1 with a herniation greater than 5mm, but the exact measurement was not noted in the report.
The Silver Bullet(s)
I added a few things to my day-to-day supplement regimen in light of the new results (after throwing a mild pity party when my genetic testing confirmed EDS and I joined Facebook support groups for EDS and Chiari that made it seem like my life, as I knew it, was completely over and would never improve- only get worse).
- PQQ (Bulletproof brand Unfair Advantage; 4 ampules daily)
- Fractionated aloe vera juice (2 oz daily)
- Liposomal Vitamin C Plus (Seeking Health brand; 1 tsp mixed with the aloe juice)
- Restore (1 tsp on empty stomach right after my thyroid meds in the morning, then before each meal)
- Probiota 12 (directly following Restore 3x daily)
*I had discontinued my probiotic while taking the anti-parasitic herbs, so I was just restarting it, not necessarily adding it
- Vitamin D3 (10,000 IU)
- Magnesium L-threonate (NeuroMag from Life Extension; 3 caps 1x daily)
- Vitamin E (mixed tocopherals 400mg additional to what’s in my multivitamin)
*I added extra vitamin D, E, and magnesium because my urinalysis results finally came in (6 weeks later) and I was low in all three
- L-lysine (500mg 1x daily)
- Decaf Bulletproof Coffee + 4 tbsp grass-fed butter + 1-3 tsp brain octane oil (at least 1x daily in place of a meal)
- Xlear + Argentyn 23 (for MARCoNS; 2 sprays Xlear + 1 spray Argentyn 23; each nostril 3x daily)
What a difference all of that made! I see now that I am 90% healed from CIRS. My MARCoNS swab was positive, although the antibiotic resistance was relatively low in that it was only resistant to two antibiotics. However, having unsuccessfully tried BEG spray in the past, the Xlear and Argentyn 23 route seemed like a good course of treatment, and it was what Jennifer recommended. At first, I tried a higher dose and was having a HERX-like reaction, so I backed off and managed the lower dose well. I have not had follow up CIRS blood work to see what improvements I’ve made with MMP-9, MSH, and TGF beta-1, although when Lifeworks reopens after the holidays I plan to request a lab slip to find out.
All in all, I think my remaining issues are the MARCoNS eradication, which could take a few months, as well as EDS and Chiari. Apparently, just using fractionated aloe juice is enough to put some people’s EDS into remission, although I think it probably depends on severity. My Chiari is a result of EDS and was worsened by CIRS. The only treatment for Chiari is surgery. Judging by what neurological symptoms still remain after my almost completely successful treatment of CIRS, I would say that Chiari is actually responsible for 50% of all of my symptoms- neurological and otherwise.
Chiari Malformation is, essentially, when your connective tissues are weakened by something like EDS and through force of gravity, toxin exposure, and trauma the tonsils of the brain herniate into the spinal column. The cerebral spinal fluid (CSF) builds up because the herniation is blocking your brain’s lymphatic flow. The only treatments for this include neuro surgery to remove part of your skull (decompression), and neuro surgery to place a shunt that can drain the CSF. These are highly invasive surgeries with a high rate of complication, and a relatively low rate of symptom resolution, from everything I can tell. In other words, the surgery doesn’t actually fix you. Why have it then? It may prevent permanent nerve damage, paralysis, and death from occurring later on. That’s exciting stuff, right? I found one of the very last pieces to the puzzle, but the treatment (there is no cure) is not exactly a treatment by most people’s standards.
My friends keep asking me if I found out whether or not I need surgery, and that’s my fault for presenting the situation as a question of whether or not surgery would be necessary. Surgery is necessary, but it’s not like it’s mandatory. It’s like if you were diagnosed with cancer and the doctor prescribed a treatment of surgery or chemotherapy or radiation. There is no cure, those are the treatments, but you don’t necessarily have to do what has been recommended.
Are there viable alternatives? I haven’t quite put the idea to rest, yet, but the general scientific consensus is that there is no alternative. Jennifer referred me to a chiropractor who does a special technique that is supposed to provide some symptom relieve for Chiari, and I have a consult scheduled for January. Typically, people with EDS and/or Chiari are advised never to see chiropractors. This technique is not that of a normal chiropractor, though, and there is no popping, twisting, or jerking involved. The treatment would start out being 2x/week at $55 per session. This is a highly specialized technique that most chiropractors aren’t trained to perform. Therefore, if you consider spending $110 every week for the rest of your life, taking sick leave from work 2 days per week every day for the rest of your life, and only living within close proximity to one of these special chiropractors for the rest of your life a feasible option, then, yes, there might be a possible alternative to surgery.
This next month, I’m hopefully going to get some follow-up blood work done, so that I can compare my progress in a quantifiable way. I’d like to, not only see the updated CIRS labs, but also my bioavailable copper, and copper/zinc ratio. I’ve been working on balancing my minerals for almost as long as I’ve been working on curing my CIRS.
I’ll also hopefully continue to improve on my new at-home supplement protocol. I’ll continue intermittent fasting and decaf Bulletproof coffee (which I can now tolerate, whereas before treatment I could not). I no longer have debilitating food sensitivities or a compulsion to overeat, so I plan to continue to implore moderation and continue the ketogenic/paleo eating pattern with occasional indulgences like a little bit of dairy, chocolate and nut butters. I plan to continue working out 1-2x/ week, but now I will be mindful of the movements Chiarians are advised to avoid.
At some point during spring semester I will (hopefully) start back with my clinical rotations of my dietetic internship. That means I will have to deal with stress, and I’m a little intimidated. I’m also feeling optimistic, though. As long as my environment is relatively mold-free I think I can do this. I have actually started to miss being in the clinical space and having the structure of a “job”. Within the past couple of weeks, especially, I’ve been feeling like I can get back out into the world like someone without any disability.
I didn’t really mention it earlier, but my Christmas travel went off without a hitch. I sat near the front of the plane, used pressure reducing ear plugs, and a neck pillow and my head didn’t feel like it was going to explode! That’s huge! Those were tips I gleaned from a blog about Chiari. I’m pretty sure I was exposed to mold, but I didn’t react much if any. I drank a lot of wine with my girlfriends one night and was minimally hungover. I ate cheese, had an entire night of insomnia, and was overstimulated to the max bouncing from gracious friend’s house to gracious friend’s house (since I couldn’t go to my parents’ house because of the reactivity issue), and still felt totally fine. The day after I returned home from my trip was a little rough, but all things considered it was a pleasant surprise. I can travel again! If I can travel again, then surely I can work/intern again.
I’m tired of being a shut-in. I’m so over having to pass on making new friends and going out to eat or never going on dates. I’m more than ready to run more than a couple errands in one day without regretting it. I’ve put in the hard work, invested the cash, and now I’m finally seeing a light at the end of this tunnel. I say this tunnel, because I know there will be another tunnel after this one. I’m just hoping for a little more blue sky in between, this time.