Day 133: Allergies Have Improved

Month 4: Allergies Have Improved  

I've been in a state of limbo and have not ordered my second inoculation yet. There's a Bitcoin error on my end I need to resolve first. So I've just been living with the current dose of 10 NA that I inoculated with April 4. Gastrointestinal side effects of the worms has ceased. I still take high potency Vitamin D weekly but haven't had stomach cramps during the day for weeks.

To date, I haven't seen any improvement in my skin psoriasis yet nor in any of the swollen joints I have developed more recently with psoriatic arthritis.

However, I have noticed a marked improvement in my allergies! I've had year-round allergies since I was in 1st grade, and have taken once daily antihistamines like Zyrtec, Claritin, and Allegra since I was 10. I've also used Flonase (fluticasone) once or twice daily since 2010.

Two weeks ago I stopped taking Allegra and have been fine! I've kept up the Flonase but in the past if I didn't take Allegra I'd have allergy attacks throughout the day. It's not peak allergy season, but in the Bay Area pollen and grass count has been moderate to low throughout the summer. We've also experienced heavy smoke from the California wild fires and I've been okay.

The real test will be this Spring will allergies but I'm heartened to see some benefits from the 10 NA even though it hasn't benefited my psorasis yet.


 

Month 3 - Day 105: Planning 2nd Inoculation

It's been a while since I've posted. Since week 9 when I last posted I was just diagnosed with psoriatic arthritis and have been discussing with my rheumatologist pharmaceutical treatment options. However, before I start on that path I want to see through this helminthic therapy as the side effects are more severe with Otezla e.g depression than with helminthic therapy. 

My abdominal pain has subsided over the last month taking 50,000 IUs of Vitamin D every 5 days. However my psorasis and psoriatic arthritis symptoms remain about the same as when I started the therapy in April of this year.

I'm planning on taking another dose either 10NA or 15NA. However, since I need to buy them with Bitcoin I'm watching the Bitcoin market and trying to time when to buy BC lower and then buy NA after BC rises. This is probably not that necessary but I look forward to a day when I can just pay cash for this therapy (or even better use insurance!) 

Day 67: Diagnosed with psoriatic arthritis

I haven't blogged about this before, but one of the driving reasons for me to try helminthic therapy was a concern that I was developing symptoms of psoriatic arthritis (PA), which about 20% of people with active plaque psorasis get.

About four months ago while I was traveling I noticed my second toe on my left foot swelled up, whats known as sausage toe or dactylitis. I've also noticed little "pits" on my finger nails for a couple years that come and go and I thought could be an indication of nutrient deficiency. However, the combination of both are clear indications of PA, and on Friday I went to see a rheumatologist for the first time who confirmed the diagnosis. 

This diagnosis weighs heavy on my heart since PA is much more seriously impacting than just plaque psorasis, which has had its own challenges. It also means my approach to topical ointments can't help PA and I need a systemic medicine that can help treat this so I do not have long term joint damage occur.

I told my rheumatologist about my on-going helminthic therapy treatment. She had never heard of anyone doing this before, but seemed intrigued. I brought in the Cheng paper  and wrote the name of the helminthic therapy wiki and my blog on the top.

My rheumatologist recommended considering methotextrate or Otezla - neither of which I see listed on the helminthic care list of drugs that don't interfere with NA. I'm now in the process of researching both of these drugs and weighing the benefits and side effects of each one while determining when to try them now that is just past 2 months of inoculating with NA.

Day 55: I Get By....

The theme of the last few weeks have been about support from my friends, family and the online Helminthic Therapy community. For resources on where to join these groups follow this link: https://helminthictherapywiki.org/wiki/index.php/Helminthic_therapy_support_groups. The Facebook group has been a real lifeline through this process.

From day 45-53 I've had off-and-on debilitating stomach cramping and gas. I'm glad I have supportive friends and family who know what I'm trying with helminthic therapy, and are generally interested and sympathetic to the process.

Doing this without Prednisone was tough and last weekend Saturday and Sunday afternoons around 2PM I was so uncomfortable I just had to sit in a bathtub for like three hours. My girlfriend jokes that now I know what having a period is like! =-P

About a week ago when I was thinking how I could convince my doctor to prescribe me Prednisone, I read on the Helminthic Therapy Facebook Group that high potency Vitamin D was just as effective in treating the side effects. This sparked my interested and I ordered 50,000IU Vitamin D (which is REALLY a lot). The label says to take it only once a week unless prescribed by a doctor. I took one pill last Saturday and by Sunday night the nearly constant cramping had ceased! I was able to enjoy a Memorial Day BBQ eating everything (still avoiding drinking).

I'm planning to take one 50,000IU pill every 5 days for a few weeks (10,000IUs is the Max. recommended per day based on my research) until I get through the worst of these side effects.

Day 42: Don't Panic

It's day 42 and for my Hitch Hiker's Guide to the Galaxy friends the answer to Life the Universe and Everything!

I'm happy to report I'm feeling better overall with gastrointestinal cramping and headaches. The discomfort comes and goes, but overall started subsiding yesterday and this morning wasn't a big issue. I'm still avoiding alcohol (which is good for me in general to avoid!). My stools have been normal as well.

The trick to getting through this is all about attitude. Don't Panic.

I've also found that exercising a lot - even through the discomfort has helped settle my nerves. So that's a tip to stay active when all I want to do is boob out on a couch.

Week 5 - The Going Gets Tough

Hookworm Timeline

The first thing when considering helminthic therapy one should do is to read the Helminthic Therapy Wiki. I read pretty much every page on this wiki before reaching out to order.

Right now I'm in the "side effects" section and I'm feeling it.

https://helminthictherapywiki.org/wiki/index.php/Hookworm_timeline

Day 40 

It's Day 40 since inoculation and I can say that the last few four days (36-40) have been rough with side effects. Four days ago I started experiencing gastrointestinal cramping and fatigue that felt to me like the day before coming down with a bad case of food positioning.  You know when you realize something isn't right and then later that night you're puking for hours on end.

Well this is like that first part without the dramatic puking - more of a fairly constant malaise that would subside by resting on my back.  Last night I felt a little feverish and overall exhausted, I wasn't sure if I'd make it into work but this morning I woke up and my stomach felt fairly settled but I had a gnarly headache. I took DayQuil today to alleviate some of the side effects at work today.

I haven't lost my appetite but have been trying to eat easier foods on my stomach - soups and the like, and avoid alcohol.

I've also experienced a very bad flair up both with psoriasis and more acne-like symptoms than I've experienced in a long time.  I've had psoriasis under my left armpit and a few days ago a flair up "bump" appeared underneath it, similar to my eye-lid flaring up before that...I'm hoping it goes away in the next week.

Staying Positive Through the Discomfort 

Knowing WHY I'm feeling like this certainly helps. So does reading the Wiki and seeing similar experiences. Regulating one's immune system with helminths isn't for the faint of heart. I've been thinking to myself that moving through this discomfort is going to lead to relaxing my immune system, and change in the form of new microbiome introduction is hard.

I've been saying to myself at night before sleeping "I'm healing, I'm resetting, this is good" to move through the malaise.

May the Fourth be With You: One Month Past Inoculation

It's been exactly one month since I inoculated with 10 NA and I also just got my UBiome test #1 results back *see below*. I'm also stoked it's May the Fourth aka StarWars Day and it immediately made me think of this wormy space scene! =-)

This first month has been a bit of a whirl wind in my life as applied to new companies after returning from traveling around Southeast Asia from October 2017-March 2018. I was a nervous about the side effects of helminthic therapy impeding my job search but I can tell any of you reading this and considering helminthic therapy that it's been overwhelmingly bearable and a great conversation starter (for my weird and wild friends) -  which I find a great co-benefit of doing this! 😆😅I also got two job offers(!) and had an intense and quite stressful week of salary negotiations and decision-making. Now I start work on Monday after 9 months of 'funemployment'. 

Often I notice that my psorasis get worse with stress, which is well documented. I'd say after that eye-lid flared up earlier in the month I haven't noticed any other flare ups despite the added stress from a job hunt coupled with an increased Eosinophil count (which can cause side effects).

Optimistic Progress or Placebo?

(Probably Placebo) 

For the past week I have dramatically cut back on using my topical steroid Clobetasol Propionate - and my psorasis has not markedly flared up (as it has about a week later in the past). I know it's way early for the worms to generally start working but I want to see how my skin gets on without a lot of intervention. Perhaps chalk it up to positive thinking or the placebo effect.

Note: I still have a lot of plaques and they are a constant presence but they vary in how scaly the skin is and how itchy. Often when I'm stressed they get a lot worse and despite the hectic job hunt and week of tough decisions I went through they haven't gotten too bad. 

Side effects

Overall the effects this month have been relatively mild. I experienced moderate lower abdominal cramping about 2-3 weeks after inoculating , especially when I'm biking, which felt like bad gas. That lasted about a week and has since lessened its effects. 

A Note on Diet

I have to be really honest here when it comes to trying diet to control psorasis, I've given it a full 60% effort on that front. What do I mean by that? Twice I've tried an elimination diet (see Amy Myers Autoimmune Solution or Whole 30 Diet) which is basically the Paleo diet minus legumes and most nuts. Buttt I've only tried them for a month and haven't given it the 90 days people say it needs to work. I'd say I eat overall quite healthy but enjoy burritos and cheese here and there and have been traveling a lot as well which means I've wanted to try various local dishes.

So let's just say over this month I haven't changed my diet at all - which I think is good to isolate the effect of the NA helminths. I am a moderate social drinker (2-5 drinks per week on average), eat gluten, diary, and smoke weed on occasion. There's plenty of things I know I could change and improve my condition, and some people said that it would be wise to make those changes fully before trying something more risky like helminthic therapy. I would agree on that front it's definitely less risky, but also definitely not as interesting and also not as easy. I mean the worms do all the work to regulate your immune system for you and all they ask is a negligible amount of blood in exchange! (Ancylostoma duodenale draws a lot more blood than the therapeutically used species Necator americanus (NA)). 

On the lack of keeping with an anti-inflammatory diet, I'd say its been both a lack of self-discipline and a conscious trade off between improving my psorasis condition which is very irritating but not debilitating versus eating whatever I want and trying new food when traveling. The willpower to heal often means changing habits like unhealthy dieting (or smoking or over-working yourself) which is a decision anyone with a chronic condition often makes only when the pain of not changing overwhelms the comfort of staying in place. Being in the sales professional I know quite well that pain or the fear of loss motivates people much more often that a promised future. Behavioral inertia is a powerful force - its just a basic part of human psychology. For example, most people who turn to helminthic therapy have tried a lot of other things like myself with a lack of results.

The the fact many people have only needed to inoculate NA 1-3 times over a few years to see big improvements in their conditions is much more accessible therapy than daily UV therapy lasting 10-30 minutes or even bi-monthly shots of biologics!

UBiome Test 

Just today I got my results back from my UBiome Sample I took Day 10 (4.14) post my inoculation. I will do 2 more on around the 3rd month and then 6 months out.

Summary: Overall since my first test 7 months ago, August 2017 my gut microbiota has become less diverse overall which I attribute to taking antibiotics 3 times during my 4 month trip through Southeast Asia (twice for Paronychia finger-infection and once for a stomach bug.)

Observations: I've seen an increase in the fat-digesting Firmicutes and a drop in Bacteroidetes. There's been a casual link establish between obesity and a higher rate of Firmicutes than Baceroidetes. However, I don't have a weight issue. I've also seen an increase in Proteobacteria. Although all of us carry these microbes, folks with inflammatory bowel disease seem to have more Proteobacteria and fewer varieties of other bacteria. I've also seen a total drop in my number of microbes UBiome classifies as having "often-noted probiotic qualities" from 0.07% to 0% which isn't huge in relative terms except the average is 1%. This is definitely something to look into.

Here's the results:

Day 8 - Worm Wrestling & Side Effects

It was my 27 birthday this week and in great situational irony I participated in my first 'Worm Wrestling' over the weekend at a party out in Northern California. Basically two people get into mummy sleeping bags, bow and then try to shimmy each other off a mattress. It's hilarious.

I'm hoping to get that fabled "bump" but so far feel that a lot of my allergy/asthmas and psorasis symptoms are just in overdrive this past week.

After the first three days the itching on my arm stopped. I noticed a shortness of breath the first couple days that weren't pronounced but I usually have asthmas only when exercising vigorously.

One week later and I feel like I'm more agitated overall. It could (likely) be due to the Spring pollen blooms that are happening around Northern California now and my seasonal allergies going haywire which happens this time of year. However, I've also experienced more frequent heart burn which I only rarely got before and some lower stomach cramps (not too severe). Another frustrating occurrence is my right eyelid has swelled up. I get psorasis on my eyelids and a few months ago it swelled up like this as well. I'm not sure the cause of the swelling unfortunately and if it doesn't go away in the next few days will go to a specialist.

Day 2: Itching and the Power of Positive Thinking

It's been just over 24 hours since I applied 10 NA and the itching has been pretty persistent, but that's the only side effect I've noticed.

While I don't know how this experiment will turn out, I can say that today I feel more in control of my health than I have in a while. For the last year I've been demoralized as more plaques have shown up on my stomach, an area I've never had plaques before. Now I feel empowered and on a healing journey. I am focusing on a mantra of sorts: 'these little worms are my friends and will help me heal and clear my skin'. This positive thinking is helping already to feel more energy today and sharing my journey with friends, many of whom are fascinated is also boosting my morale.

26 hours after inoculation

Day 1: Going down the Wormhole

I've gone down the wormhole now! I have just inoculated myself with 10 Necator Americanus (NA) hookworms that I bought online for $200USD using Bitcoin with the intention of treating plaque psorasis and allergies. After conversing with several providers I chose one that had good reviews and were very professional and responsive. Lastly, they ship to the US which is a convenience lifesaver. (Contact me directly if you want more information.)

My heart was beating quite fast as I unwrapped the package. I said a little prayer (can't hurt) and followed the instructions and placed it on my shoulder. About 12 minutes later it started itching from the larvae penetrating my skin, but let's be real, having suffered from plaque psorasis for 10 years now I'm already used to a burning itching sensation on my arms and legs. I'm intrigued about what's to come and will be documenting my experience and testing how/if my microbiomes changes along the way using a home UBiome test ($220 USD).

I chose to start with 10 NA as a low-medium range dose. Many people choose 25 right off the bat but I was encouraged with results that showed 5-10 NA can have the same benefits without some of the gastrointestinal side effects.



While my girlfriend and some other people in my life find this whole thing concerning, I am fascinated with the potential. I decided to go ahead with helminthic therapy after trying UV therapy and using topicals for decades with little control of the plaques. After more than seven months of careful research on helminthic therapy while weighing the potential side effects and cost of this type of experimental therapy (e.g stomach ache, heartburn) against using pharmaceutical biologic drugs (like Humira) and its side effects (e.g headache, cancer) and cost.

The fact these biologic drugs have only been around just over decade and we don't really know what the lifetime side effects of them are versus having a small colony of 10 NA which have been living in humans for thousands of years seems to be a saner approach.

Also, fuck Big Pharma. Humira is one of the most profitable drugs of all time  with each patient costing over $20,000 per year to treat! If helminthic therapy for me is successful and I can treat psorasis instead with a few hundred dollars (out of my own pocket) then I demand my insurance company's accounts payable department to write me a personal letter thanking me!

Down the Rabbit Wormhole with some "Old Friends" 

I'm 27 years old with an Ashkenazi Jewish background (like 98% according to 23andMe), and besides environmental allergies and plaque psorasis have been quite healthy. I run, bike, dance, and do yoga at least 4-5 times per week. I love to travel to developing countries and have just returned from a four month trip around Southeast Asia this past year. Frankly just eating street food off a bike-trolly in Vietnam probably has as much risk of contamination as this well packaged

Plaque psorasis has gotten worse over the last 10 years and has been popping up on more parts of my body causing physical and and emotional discomfort. That said I have never wanted to mess with my immune system using pharmaceutical immunosuppressant drugs designed to treat psorasis as the side effects are too long to list here.

Last year I read Moises Velasquez-Manoff's An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases and spent countless hours reading the helminthic wiki, individual blogs, documentaries I slowly became convinced that this was worth trying based on the "old friend" hypothesis. 

I now embark on this journey and will be blogging every week or so as my own record and I hope you learn something too!

Microbiome Fever

I've always been fascinated with the fact that we have 10X more microbes living in us than cells. Each of us is a walking ecosystem that is not separate from our environment, this is called our microbiome. This concept has radically altered how I see "my" body as not a continuous individual but a host to communities of microbiota that help regulate different aspects of my health and even mood.  We are the sum total of our human genes and the genes of millions of other lifeforms that have lived within the human microbiome for millennia.

I work in the field of solar energy and have been fighting climate change since I graduated from UC Berkeley in 2013. I am fascinated (and horrified) how rapidly our environment is changing and becoming more inflamed around us. It wasn't until I was 26 that I started turning my gaze inward to look at how my own microbiome was suffering from a lack of balance and how that could be related to psorasis, allergies, and asthma. 

Reducing our microbiome with antibiotics 

Advances in modern medicine have allowed us to understand how to treat illnesses caused by bacteria and viruses, and the miracle of antibiotics has extended lifespans and reduced suffering around the world. But we live now in an age where antibiotics are popped like candy, and growing up I took way more antibiotics than I care to think about in a quest for a quick fix.

My well-meaning mother took me to a dermatologist when I was in 7th grade and had bad facial acne who prescribed me antibiotics (Tetracyclines) over a year long period to ward it off.. I also had bad allergies and asthma growing up (more on this later) and went to an ENT (many times) who would prescribe me azithromycin and Amoxicillin to combat recurring sinusitis infections.

Basically growing up my immune system was overacting and then my microbiome was pummeled again and again with doses of heavy antibiotics. Ugh!

Plaque psoriasis and the microbiome 

Plaque psorasis started appearing when I was about 18 years old with a small patch on my scalp at the hairline. It's progressed since then to large patches on my legs and thighs, with smaller patches on my back and stomach. The absolute worst place it appears though is on my eye lids causing me to look high all the time unless I apply topical steroids on my eye lids which I'm not comfortable with long term.

I was interested to learn early on it was an autoimmune disease and while its definitely genetically passed down, it was probably triggered and worsened due to environmental conditions outside and inside of my body. I'm sure 10+ years of abusing antibiotics coupled with a Western diet high in sugars, carbohydrates, and fats were part of the problem. (I've never had a weight issue and have always considered myself to be a "healthy" eater. That said, I enjoy In N' Out every now and again.)

The National Psoriasis foundation is posting more on the frontier of the microbiome and its regulation in treating psoriasis. People are eating certain diets and avoiding inflammatory foods, taking probiotics, and even experimenting in helminthic therapy.

Baseline with topical steroid treatment - April 4, 2018

Not too fun! 

 My Microbiome Baseline - UBiome 

Last year I decided to take a snap shot of my microbiome using UBiome Explorer test. A consumer-friendly $89 test that takes a high level sample of my microbiome. 

Throughout this process of healing myself using helminths and dieting I will be conducting a time trail test over the next three months using UBiome's services. 

Here's some of the results from last year: