How Did I Get Here, Part 3

plus my detailed toolkit for battling chronic illness

[me yesterday, an accidental shot my iPhone took & then I realized it was a nice contrast to the usual very dire-looking bed selfies I have collected over the years]

Long story long, I ended up moving thirtysomething times in one year. Sometimes that was one night in a stranger’s house where I did not get a wink of sleep and instead meditated feelings of hyperventilation away while examining black spots in the cracks of their vents and window frames. Sometimes it was a couple weeks in a “safe building.” No one could tell why my parents’ place still felt like a “sick building” to me; their mold scores had gone low after remediation. But under my bedroom there were over 30 smartmeters for the entire condo complex (and there are controversial theories about mold and wife and electrosmog etc.) and outside there was a freeway entrance. Glendale, like the Pasadena I grew up in, was known to be polluted—much of the San Gabriel Valley when I was young was known as LA’s “smog bowl” (interestingly today Altadena is often ranked best air in the region). Whatever it was, I was allergic to every home I could find, it felt like. I couldn’t ask everyone I met to follow the new cleanliness regimens I had become obsessed with, to use only organic products, to replace all the things I could perceive as moldy. I slept in Irvine, Playa del Rey, Palos Verdes, downtown LA,  Venice, South LA. Northern California had challenged me in the same ways and sometimes worse: I slept in Noe Valley, in the Sunset, in Oakland, in Redwood City, in Sausalito. It was all no use. My doctor in the Bay Area, a renowned Lyme MD, at one point told me I should not live there—“nothing is safe here,” he said. “maybe even in the state.”

California felt deeply unsafe but so did my body in general. Even the best places put me in panic. I spent a day with my parents in Palm Spring and on the car ride back I was literally howling from bone and muscle pain. I spent a day with a friend in Joshua Tree and the next day felt like I had been asphyxiated all night. I went by the my favorite place, the ocean, sacred old Zuma, and even the breeze felt somehow “infected.” I realized I could be losing my mind.

At this point I had lost close to 40 pounds in a year. I had barely any saliva—I’d test negative for Sjogren’s but the saliva portion was always borderline—and terrible dysphagia. I had a 2.5 cm nodule on my thyroid and a 1.5 cm cyst in my throat but after a fine needle biopsy they denied it was related to my throat issues. I had trouble breathing but the pulmonary function test was mostly normal. I had awful piercing and twisting stomach pains but the endoscopy showed only mild gastritis with a very small hiatal hernia. I had burning headaches, headaches that made me feel like my head was swelling, headaches that made me feel like my brain was full of smoldering glue—and yet MRIs and CTs were all clear. 

It always came back to mold for me and luckily my doctors. The problem was if I was in a moldy environment no medication would work. 

So I made a leap of faith. Many were consulted, doctors and friends and professionals of all sorts, and I could not be okay at home. California in general never helped me. This was literally in my memoir, friends reminded me. And the place that in spite of all common sense healed me most was always New York. It was also in the memoir. I had to return to NYC.

So I did that crazy thing and booked a flight. At that point I could barely ride in a car so a flight seemed a stretch. The month before I had gone to Miami to teach at a conference—momentum on my crowdfund had gone down in recent months so I needed money badly—and the whole experience had set me back months. How could I do this?  I looked at the possessions I had—at this point there were just about six or seven items of clothing, as I had thrown out all else. Two very expensive air purifiers that would have to be left behind. And my dog. (I had long ago decided that I would not subject Cosmo to a new home until I knew I had a permanent one. He loved being with my parents in their condo—he had no health issues there, none that I could tell, although at times he’d be possessed with a strange agitation I could not understand.)

A friend offered a month at her friend’s house, a luxury condo in the Upper East Side. I got there, stayed there, but even then could not be alone for more than a few hours at once. I hired caretakers, I forced myself to apartment viewings, I found myself a roommate, and eventually we found a place. But it was torture—blistering hot and humid New York summer where brokers would drag us around the boroughs, me in my Vogmask and cane trying to stay calm as we lingered in basements filled with black mold and inspected frontloading washer and dryers and took photos of every surface we could for our “mold coach.” Nothing was good enough, nothing we could afford. We took ERMI tests of every space and sometimes even air samples if we got close. All my money was going to mold avoidance.

But we found a place. In, of all places, Queens, a borough I barely knew until now. It’s a 1960 high-rise, all steel and concrete, with an indestructible air. The management seemed mold-literate and allowed us to test as much as we want and even allowed us to move after a few weeks in one unit that we realized had water damage later. But now I have settled in. New air purifiers everywhere, an organic mattress (I went with NEST), still few clothing items (I frequent the local Target for most what I wear now, as I realize these things could be quite dispensable), all new books being sent to me in shipment installments because I am judging a big literary prize this year. It’s been nearly four months. Two months ago when I realized I felt good here, I also had my dog sent here (rather, another disabled friend flew with him and brought him to me). 

Things have fallen into place. I have started to teaching writing out of my own living room. I do manuscript consults. I work on my next book and the next. I take walks with Cosmo. 

Am I better now? Not fully. Not yet. But largely. Mold detox has rid me of severe POTS symptoms—it’s so light now that I contemplate discontinuing my betablocker.  Is my pain gone? No, but it seems to get better mostly. My stomach? Completely better. My swallowing? Mostly. My headaches? Still there but less.

I basically got settled and went about a very methodical system to get well, with two doctors overseeing a protocol system that was my own.

I realized I could not tolerate most meds because I had SIBO and MCAS. We had done the breath test and I had hydrogen SIBO. I could not tolerate the Xiafan antibiotic so I tried the Johns Hopkins Candibactrin protocol though I could not tolerate AR’s oregano oil for long. Nonetheless by six weeks I had SIBO under control. At this point I also figured out my MCAS routine (see below). I also had to be dedicated to binding—I rotated a hearty group I list below and never skipped a day. I loaded up on fish oil which helped me saliva and my brain and allowed me to tolerate a lot of the binders. I did Marcons treatment too (below). Then when that felt stable, I added antifungals (not I added this layer in nearly two years after exposure—I needed to be sure I was strong enough). I also then balanced B vitamins and added LDN and discontinued benzos (currently at the end of a Klonopin taper). I focused on pain management and detox and it is only now that I can see the end.

I will continue to post here and there about these things, especially as I continue treating, but for now some *key things that helped me*. . .

Supplements:

L-ornithine & butyrate—for getting rid of ammonia after die-off

Japanese knotweed drops by Biopure—for Lyme maintenance

b-12—I followed a careful protocol by Australian scientist Gregory Russell-Jones. There is a Facebook group called “Understanding B12 Deficiency” and that was the only way I was able to tolerate B vitamins again. I have compound heterozygous MTHFR so B vitamins are crucial but challenging. The protocol has you stabilizing on iodine, selenium, and molybdenum before you work in B2 and B12 by transdermal application. I found it miraculous.

Black cumin seed oil—or also known as “black seed oil.” This stuff just feels good. It’s an anti-inflammatory. You don’t notice how great it was until it is gone.

Aloe vera—this seems to be recommended for EDS. It helps with my gut too.

Serrapeptase—Great biofilm buster

Propolis—great Lyme med, anti-inflammatory, immune boosting. I like the Brazilian stuff you can find online, esp as now they are not distilled in alcohol.

Grassfed beef spleen from the Ancestral line—I am often anemic but I do poorly on iron pills (rough on the gut) so I take these. They seem to work!

Candibactrin BR—this was part of my SIBO protocol but I just kept taking it as Berberine is great for blood sugar and candida 

L-lysine—this is the only antiviral I can handle and all my viral counts flared after this year

Fish oil

Vitamin E

CoQ10

Probiotics:

Megaspore Probiotic

Saccharomyces boulardii—great for yeast and mold

Sleep meds:

Melatonin Gummies (5mg). I often could not tolerate melatonin when I was very toxic, as it mobilizes a lot of gunk. It’s a very strong antioxidant and impacts hormones too so I had to be cautious.

Magnesium malate—my favorite type

MMJ, Klonopin, Gabapentin, Propanolol have all made it to this round

Binders:

Compounded cholestyramine—last year I could not even handle this but for the past many months I’ve been doing a teaspoon or more a day. I now weirdly crave it as it really helps my neuro symptoms especially.

I rotate some of the rest:

Premium Labs Medi-clay

Zeobind by Biopure

Takesumi Supreme bamboo charcoal

Gut help:

BPC-157 pills—this is a peptide that helps the gut and connective issue (yay EDS!) so I am hooked.

Betaine HCL pills—I use one that has ox bile in it too and that helps me

Bitters—I like Swedish bitters or the Urban Moonshine digestive bitters. These were game changers for me.

Zinc carnosine

Mast cell drugs:

Allegra 120 mg a day, Pepcid 20 mg a day

Klonopin—a great mast cell stabilizer. I was on 1.5 but now down to 0.0625 and almost done. For me, it was not a good permanent solution as it made me depressed.

Neuroprotek—developed by legendary MCAS doctor Theoharides, this is a great way to get your quercetin

Benadryl—a good emergency med but I often use it as a painkiller. I buy the dye-free gel-caps on Amazon, and just bite them and squeeze out liquid in my mouth anytime I feel a bad flare coming on

Vitamin C—I use the buffered powdered kind 

Pain:

Medical Marijuana—I buy tinctures and mints from my local Curaleaf dispensary (1:1 tincture, 1:20 THC to CBD). They are hybrids but I normally prefer Indica strains.

Low-dose naltrexone—I have been ramping up for the past two months. Currently at 2.6 and I started from 0.1. Like many, the start was rough—I had fevers, insomnia, just general weirdness. But by week 3 I started to love it.

Gabapentin—not my favorite as it like Klonopin makes you a bit depressed, but great for nerve pain. I was on 900mg and now on 400mg.

POTS meds:

Propanolol—this is the only POTS med other than salt and electrolytes I can handle. Tachycardia in general made everything impossible and this immediately made me feel relief. My resting heart rate went to 100+to 70. I take 10mg three times a day. Amazingly it does not lower my blood pressure too much. As far as I can tell there are no side effects, which is a miracle for me.

Antifungals:

I used to be able to take fluconazole with no problem but it became toxic for me (I had major liver problems at one point). Nystatin started not to work. Eventually once I got strong enough, I tried Itraconazole/Sporonox and it was a game-changer. My tongue had had a terrible white coating for over a year and it quickly cleared up. I just felt better somehow—my brain felt a bit cleared and I seemed to have more energy. I take this five days on and two days off at 200mg a day (I started at 100).

Foods that helped me:

Cream of rice (!!!!!)—Okay, so this is not organic. It’s the cheap stuff in the orange box but throughout this journey I had stomach problems and full-blown SIBO for a while. This was a soothing thing for my stomach especially first thing in the morning, as I’d often wake up with awfully painful bowel movements that had me doubled over for hours. I would make this with hemp milk as even nut milks and coconut milk bothered me for a while there. So I started to use this with ghee and salt. Eventually I was able to add some frozen fruit and now I even add chocolate chips! But the point is that while technically not healthy for their carb content, rice and oats also can be great binders for your gut. They also just feel soothing somehow.

Non-sulphur veggies—get ready to love zucchini. I had to google this. My sulphur sensitivity was a really bad issue for a while.

Eggs—once I got over my sulphur probs! Organic, free-range, etc please.

Pizza—I know this seems nuts but Domino’s gluten-free pizza became a treat and somehow the first “real person food” I could handle. It also helped me gain weight.

Shake Shack—good quality meat, gluten-free buns, and you can basically have them very plain. They still taste good and they are pretty cheap.

Pickles—pickles help people with POTS as they provide needed electrolytes and the salt is a great mold-killer.

Apples & pears—it took me a while to handle fruits but when I could these were great as they supposedly pull ammonia out of the body and I definitely had problems with ammonia. 

I stay away from caffeine (sometimes I do matcha tea, all I can tolerate) and alcohol.

Sinus treatment:

Whether or not you think Marcons is a significant issue here, I did find nasal treatments to be helpful.

I used Argentyn 23 silver spray, Biocidn nasal spray I made myself (with saline packets), Xclear, straight saline solution, BEG spray (only temporarily) & colloidal silver with EDTA spray (also only temporarily—I realized anything with EDTA was doing to cause dental probs & gum soreness for me)

Baths:

Since sulphur was a problem, I avoided Epsom salts (magnesium sulfate) and instead used Magnesium chloride flakes. I should mention I don’t love baths! They trigger my POTS but I do feel better hours later.

Mood:

The best thing I have found has been kava kava. Kavaplex was recommended to me and I like it! LDN and BPC-157 seem to help my moods too.

Sauna:

I could not afford going to New York’s infrared spa Higher Dose anymore so I just bought a portable one on Amazon for $500. I use it daily for 30 minutes—this would have cost me around $1000 a month!

Air purifiers:

I invested in an IQ Air Multi-gas which is rent money but it is easily the best air purifier I have found. It can transform any space. I have it in my bedroom. In the living room, I have the less expensive Austin Air which is still expensive and quite good.

Walking:

I am still not back to exercising as I used to but I always try to walk 1-3 miles a day if possible