oral lichen planus

Severe Gut Dysbiosis, MCAS, and Oral Lichen Planus

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I have severe gut dysbiosis, and suffer from frequent urination, sensitive bladder, and functional dyspepsia. Testing shows that I have system-wide bacterial and fungal overgrowth, oral lichen planus, mast cell activation syndrome (MCAS), histamine intolerance and severe food sensitivities. I also have problems with my feet. They are very dry, tend to swell up, and there are weird itchy red sores that may be related to athletes foot or to something else.

Over the last two decades my diet has become increasingly restricted and I now am only able to tolerate white sushi rice and lean animal meats. Whenever I stray from that diet, I get severe mouth/throat/upper gut inflammation. As a result, I am severely deficient in a number of vitamins, which I have to inject, as I cannot tolerate them orally. I must restore diversity to my gut, clear the infections and expand my diet so I can get nutrients, but given the reactions I have to most foods, I do not know how.

Early History of Poor Diet

As a kid I ate a lot of sweets and didn’t have the best diet. I took a normal amount of antibiotics as a kid but had a lot of strep throat and colds. In 1997, I had the chicken pox at age 23. It was a mild case. I became more health conscious in my mid 20s and after I got campylobacter food poisoning in 1998, from food purchased from the fast food restaurant Wendy’s. I was treated with ciprofloxacin and made a full recovery. After that, I completely stopped eating fast food. I would say my diet was pretty balanced up until 2002 when I got sick. I should note, I was first exposed to black mold in 2000 and again in 2015.

The Long Decline

In 2002, I was on a 6 month course of Levaquin for a prostate infection I didn’t even have. Shortly after, I contracted giardia on a kayak trip. I developed post-infectious gastritis and severe lactose intolerance. In 2004, I had mercury exposure from dental work and developed the early stages of histamine intolerance. I then developed gluten intolerance in 2006 and IBS symptoms with constipation.

Nevertheless, I was stable for a number of years and in 2007, I contracted Lyme, Bartonella, Babesis and Mycoplasma. I tested very high for mycoplasma as well as other infections like Epstein Barr Virus. From there, I then went on to develop frequent urination, sensitive bladder, and functional dyspepsia. I developed oral lichen planus in 2008.

In 2011, I was prescribed Xifaxan, a drug used to treat IBS with diarrhea or traveler’s diarrhea, and it gave me chronic bloating, which I have had ever since. I had walking pneumonia a few times (mycoplasma) and possibly whooping cough in 2012.

In 2015, I had the flu and was under a lot of stress and had a major autoimmune flare up. I developed geographic tongue and the lichen planus got worse, as did my histamine intolerance. I was exposed to black mold and aspergillus during this period as well. My digestive symptoms got worse.

Increasingly Restricted Diet

In 2018, I took a high dose of probiotics that I had been taking for years and doing well on and it triggered some kind of major mast cell reaction in my upper gut. I have had reflux and gastritis-like symptoms ever since. My MCAS got worse and since 2018 I have been losing the ability to eat more and more foods without a reaction. Last year I tried low dose naltrexone and I had a severe autoimmune reaction to it. I have become even more hypersensitive to environmental triggers like pollution and pollen.

Right now I am 40lbs underweight and survive on white sushi rice and lean animal meats every single day. If I try to eat any plant based food, I get severe mouth/throat/upper gut inflammation. I also believe I have hydrogen sulfide SIBO. In September, I did a nasal culture which showed large amounts of coagulase positive staphylococci. My throat culture showed large amounts of streptococcus A and pseudomonas. My gut also tested positive for actinomyces.

Multiple Vitamin Deficiencies

For years my Vitamin D was suboptimal and recently tested and its 19 ng/mL. I had been giving myself weekly vitamin D injections, as I can’t tolerate any supplements, but I have recently stopped because they caused some new symptoms including: headache, dizziness, off balance, visual disturbances and loss of appetite. I am still dealing with issues a few weeks after stopping the injections. I read this can be a common side effect when people do not respond well to cholecalciferol. My plan is to purchase a special UV light for vitamin D and will try to raise my levels naturally. This is an ongoing theme. Whenever I make a little progress, I always seem to get a setback in some form, which makes this very frustrating. I also inject B complex and B12 which seems to really help with my reactions. I am very nutrient deficient especially in fat soluble vitamins and vitamin C.  Currently, I rub these vitamins on my skin and also use nasal resveratrol.

I must treat this severe dysbiosis somehow and am leaning towards antibiotics since I can’t tolerate probiotics or herbal formulas. I need to be extremely careful and have to come up with a really good protocol. I need to micro-dose and make sure I use the right antibiotic or combination of antibiotics. I also don’t want to flare up my gut or make my problems worse. If anyone can help me I would be grateful. I must restore diversity to my gut, clear the infections and expand my diet so I can get nutrients. Thank you

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5 Comments

  1. My heart goes out to the suffering of this poor person. I’ve been through the clean up process regarding mold exposure. I wonder a few things about the situation regarding what has been done to detox, as well as if and how the environmental mold exposure was resolved. But most of all, I would point to the potential of helpful tidbits of information in this book. There’s a biotoxin pathways flow chart that may be of interest for someone with more knowledge and insight. I just present material I’ve come across in the case that it may help.

    https://www.amazon.com/gp/aw/d/1628603119/ref=ppx_yo_mob_b_inactive_ship_o0_img?ie=UTF8&psc=1

  2. “I am very nutrient deficient especially in fat soluble vitamins and vitamin C.” Seems like a lot of digestive inflammation. Then nothing absorbs and you get in a vicious circle. Need the nutrients to improve digestion. There are some labs that do stool analysis to see what may be going on. Any sort of stress is very bad for digesion. Good luck.

  3. This is an unbelievable history of wrecked humanity. With so many “different diseases” it sounds as though the patient is merely echoing the doctor who made the diagnosis with each doctor visit. It actually seems to me that the patient is exhibiting each of the many disasters with a kind of sense of pride that he is able to survive amidst this medical turmoil. I cannot help but deplore this if it represents the present state of American medicine. It is so bad that the patient is apparently allowed a diet that is now well known to produce the ancient scourge of beriberi. To me the entire history speaks of an overall loss of cellular energy. He needs a series of nutritional I/Vs that might be offered by any so-called Alternative Medicine physician.

    • Thanks Derrick – I am the man behind the swollen tongue. I take weekly Vit B Complex and B 12 shots which do help with my reactions to some extent and they have also helped my kidney function go back into the normal range. My creatinine was elevated for 15 years. I am not on this diet by choice its just the only food I can eat without getting horrific gastritis like symptoms. I am slowly bringing in more foods and experiment on days I do my B injections. I made the fatal mistake of listening to a mast cell nutritionist and removed foods that I did ok with such as brown rice, potatoes and green beans and now I am unable to tolerate them. I also did some LDA (low dose allergy) therapy drops a year ago and they may have made me even more reactive. I appreciate your feedback and welcome more of it if you have additional pearls of wisdom to share.

      • I am in a similar situation. can only eat five foods. like you. I can tolerate neutral corn wafles.
        couldn´t tolerate naltrexone. I am intolant to most medications and all kind of herbs. my gut is hypersensitive. It feels sore.
        If anyone found something to heal the gut please email me. Anyone with similar food intolerances who tried resistant starch or a special bifido strain that worked. If I take only a little bit of bacteria out of a cap I get stool changes which would be o.k. showing something is going on but I get a worsening of inflammatory gut pain and neurological issues. I also have eye pain of the whole eye very often, especially if something triggered any immune reaction like taking bacteria.
        please share your experience if something helped.

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