FMT procedures for the girl who STILL can't eat

Help cover the cost of the medical procedure that will resolve my debilitating stomach issues.

My name is Alison Lyons and I still can't eat most food. Since 2012 I have been struggling with allergic-like reactions (ie: intolerances) to almost any and every food under the sun. My safe food list has gotten smaller and smaller with each year that passes and now I only have about 21 safe foods left (exotic meat & fish only); so the situation is getting very dire.

I have found a treatment that works, but I can’t afford it or any of the other supportive therapies I need for it. Especially now that I just emptied my bank account out to pay for the first few treatments, then lost my job AND just found out my rent is going up $400 per month.

The stomach issues began after treating Lyme disease from 2010-2012. Despite avoiding gut flora-damaging antibiotics for treatment, my stomach got ravaged regardless through the complications involved with lyme. The walls of my stomach were eroded and most of my good bacteria was wiped out through several secondary conditions (MCAD, SIBO, intestinal permeability).

It started in 2012 with reactions to anything containing gluten. Anytime I ate anything with any trace amount of gluten in it my stomach would burn, my belly would balloon out so far I looked pregnant; then I'd get diarrhea, ear aches, runny nose, congestion, profound fatigue, anger/depression/panic, blurred vision (so badly I go almost completely blind for the first 3 days of a reaction), cluster headaches, brain fog, high blood pressure, flu-like muscle aches and rashes.

And these symptoms used to persist for 2 weeks after ingesting gluten, to such a degree they almost completely incapacitated me.

So once I did an elimination diet and realized gluten was the culprit I removed it completely from my diet and I felt amazing. But I only got a few weeks reprieve before the symptoms returned, prompting yet another elimination diet to identify the NEW culprit. This time it was dairy. I removed dairy, felt amazing for awhile, then the symptoms returned. Another elimination diet. Soy this time. Removed soy, felt better, then symptoms returned after a few weeks. Another elimination diet. Nightshades. Eliminated nightshades, felt better, then symptoms eventually returned. Another elimination diet. This time: most fruit.

One by one I lost and became reactive to almost all foods until finally about a year later in 2013 I got to the point where I could only tolerate just meat, grapefruit, lemons/limes, celery and pumpkin.

The burning pain in my stomach had become constant, not just a reaction symptom.

My mom researched and found out about Fecal Microbiota Transplantation (FMT), a procedure where stool is taken from a healthy donor and transplanted into the intestines of an unhealthy donor to replace the pathogenic bacteria with healthy microbes instead.

We weren't crystal clear on the exact root of my stomach issues at the time in 2013, but knew dysbiosis (imbalance of gut bacteria) was a big part of it, so FMT sounded like the best possible solution. So back in 2013 I began an exhaustive search to find a doctor who provided FMT and would agree to performing it on me despite not having the only condition FMT is officially approved to treat (C. Diff).

It felt impossible but I eventually found a GI doc in Florida who agreed that FMT was my best course of action. But because I didn't have C Diff, insurance wouldn't cover anything. I needed $5,000 to get one round of FMT, which after battling [bankrupting] lyme disease I didn't have. So I turned to crowdfunding.

I reached 181% of my goal within just a few days of launching the campaign. It was one of the most profoundly emotional experiences of my life. It was one of the hardest things I've ever had to do because

1.) I'm not so great at asking for help and 2.) I was so resistant to putting my story out there. I know to someone who has never walked in these shoes all of these food issues sound insane. I expected cruelty from keyboard warriors.

What happened instead was an outflowing of love and support from family, friends and complete strangers. And in the years following that campaign so many other people with similar issues have found the campaign, reached out and I've been able to help them, they've been able to help me. I realized the sharing I was so afraid of was unfounded. Sharing my story was incredibly powerful and desperately needed for others in similar situations as myself and for my own emotional support through this very isolating experience.

So when the plane took off for Florida my mom squeezed my hand and asked if I was excited. I shrugged and said "Yes, but I think I already got what I needed most." I've always known how lucky I am to be so loved, but the full weight of it didn't hit me until the support of that campaign came through. And I didn't realize how much I could be helping others by sharing my [super weird] story.

The FMT treatment in 2013 was "bottom up" - meaning the stool was transplanted in the large intestines. This was the only way FMT was offered at the time and the only doubt my doctor had about it helping me was due to the fact that my issues were all in the small intestines, not large. So the bacteria had a long way to travel.

But at least some of the bacteria did clearly make the journey - after the treatment the constant burning pain in my stomach stopped completely AND my reactions went from 2 weeks of incapacitating pain down to 1 week of much more manageable levels of pain. I was also able to finally tolerate probiotics. Prior to FMT I couldn't even handle the amount of probiotic powder that would fit onto the tip of a steak knife without incapacitating herxheimer reactions (ie: die-off/detox/flu-like symptoms). After the FMT I could take 12 probiotic pills a day no problem.

After the FMT in 2013 my nutritionist also ordered comprehensive stool testing. It showed abnormally high levels of good bacteria in my colon, which confirmed that most the bacteria from FMT hadn’t made its way from my colon to my small intestine yet. It can take around 4 months or longer for the bacteria to travel up, so I waited patiently.

But unfortunately there’s a small percentage of people that are not able to process the FMT this way (from south to north). And it started to become apparent I was among this percentage as the 4 month mark approached and no additional positive benefits emerged.

The constant burning pain resolving and my reactions being cut in half were massive breakthroughs that validated this treatment was without a doubt the way forward, though. But despite those improvements I fell into a depression because I realized that FMT absolutely was what I needed, but I needed far more of it. If I had to go to those lengths just to get ONE treatment, how was I ever going to afford MANY treatments?

I floated through 2014-2020 in a trance, going through the motions of healing. I was still seeing my doctors and attempting all kinds of approaches for repairing gut lining and correcting dysbiosis, but nothing was getting me very far at all.

Then in 2018 I ended a relationship and he took his life. The grief knocked me so sideways I could barely function. My health markers started declining rapidly thanks to the dysregulation of my nervous system and all the chaotic hormones my brain was producing at the time.

I began reacting to all my medications and supplements. Just like the onset of the food issues in 2013, I lost the medications one by one over the course of about a year until I got to the point in 2019 that my stomach wouldn't tolerate any oral medication at all. I had to switch to finding vitamin lotions, patches, IV's and suppositories, which only doubled my medical costs. (IV’s aren’t cheap - to do IV’s of the particular nutrients I need costs around $360 per week)

Then in 2020 I began losing my "safe" foods with no rhyme or reason. Prior to that year I only became reactive to foods if I ate them too frequently or in high volume. So I was in good habits of carefully rotating and measuring foods to make sure they stayed safe. But in 2020 I began reacting to safe foods at a rate of 2-4 per month no matter what I did.

The situation was getting more and more and more dire. I had lost all plant foods by 2014 and now at this point my last safe foods are limited to a bunch of random exotic meat and fish:

venison, axis, red stag, angus beef, piedmontese beef, kobe beef, camel, emu, kangaroo, yak, antelope, water buffalo, pheasant, silkie chicken, rabbit, tilapia, red snapper, flounder, European sea bass, mahi mahi, halibut

Luckily my old crowdfunding campaign from 2013 is still visible and people still reach out to me on a regular basis who are in similar situations. One woman in Poland reached out and we connected in October 2020. She told me about a new FMT group that had all kinds of resources and testimonials. I hadn’t been keeping up with the progression of FMT treatment and didn’t realize until I got into the group that since 2013 the list of FMT providers had grown and price had gone down by more than half. I realized there might be a shred of hope.

I left no stone unturned and read gobs and gobs and gobs of stories almost identical to mine. A pattern began to emerge and it became clear that people who had as few safe foods as myself or that had been struggling as long as I had needed on the upwards of 10+ FMT treatments on average before they were able to add foods back in. I was a little crushed at realizing I’d likely need at minimum $18,000 to fully heal.

But I was losing foods so rapidly I had no choice but to jump in April 2021. I wiped out my savings account and my parents loaned me money and I was able to do my two first top-down FMT treatments. After just one the food losses stopped completely.

I went from losing 2-4 foods per month to 0 losses in the last 5 months now - the longest I’ve ever gone without a food loss in 8 years.

That result of the top-down FMT was nothing short of miraculous for me and verifies this is the path forward to healing my stomach, but there’s no way I can continue it without help. A LOT of help.

On top of likely needing 10+ treatments of FMT (@ $1,800 each), I also need money for all the other treatments I’m doing to support it (Like IV’s - around $1,440 per month, acupuncture - $300 per month, check-in’s with my doctor/labs - $400 per month, etc etc)

Not to mention one of the most painful expenditures is the diet I don’t like & didn’t choose. Exotic meats are extremely expensive on their own and that’s before the exorbitant shipping costs are added in. On average I spend about $1,200 per month on food.

Then on top of all of these medical needs I just lost my job AND found out my rent will be going up $400 per month. I’m desperate beyond words.

Anything you could spare would be beyond greatly appreciated and if you have nothing to give it would still help TREMENDOUSLY if you could share this page with your family/friends.

I plan to write updates on Medium so my FMT friends can easily keep up with my progress, so please keep checking back there for updates.

& thanks so much for taking the time to hear my story.