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.

Update

As of December 2021 I have not made the least bit of progress towards recovering my health. I went for Lyme treatment at the New York Center for Innovative Medicine this Summer and was extremely optimistic and hopeful that this would cure me. A close friend of mine went there and got her life back. Sadly, I am now 5 months post treatment and don’t feel even a tiny bit better in fact many of my old symptoms have resurfaced.

A year ago, I had black mold exposure which caused vestibular trauma and also gave me a visual processing disorder. So I now have to deal with visual and balance issues on top of debilitating daily gastrointestinal symptoms. For 18 months, I have been eating white rice, poultry breast, egg yolks and cod and my esophagus and stomach will flare up if I consume even a tiny piece of any vegetable. I have severe depression, anxiety, and am living in fear every day of my life. I spent $60,000 on medical expenses in 2021 and have absolutely nothing to show for it.

I am going to a special gastroenterology clinic in Ohio in March and will probably get an endoscopy. I am afraid this test will make me worse but I just have no options. I still think I have some kind of stealth infection or parasite in my gut that is causing all these issues. If anyone has recommendations for me I would be grateful.

Every single day I am losing more and more hope and am not sure how much longer I will survive. I am having my will drawn up because I just don’t see a future for myself. On top of this my stepfather was just diagnosed with stomach cancer and is going through chemotherapy now and the whole family is stressed out and this is taking a toll on me emotionally. Thanks for listening.

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This story was first published on February 4, 2021. It was updated on December 29, 2021.

 

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27 Comments

  1. Hey Russ,

    I have just read your story and you sound exactly the same as me. I am very very scared as well. Are you doing any better?

  2. I agree with the above comments regarding thiamine deficiency and oxalates sensitivity. Please also look at vitamin K deficiency, especially vitamin K2. It is a very long story spanning many years so I won’t bore you with all the details of what happened. Just to be brief, my son has gut dysbiosis, mainly due to excessive use of antibiotics for severe skin infections. He went on a low oxalate and low histamine diet which helped a lot but still suffered from enuresis and occasional skin flare-ups. He is allergic to aspergillus, eggs and beans, and also has many food intolerances that would also cause his skin to flare up. He cannot tolerate any food or supplement that are made from fermentation. We had to avoid methylfolate, methylcobalamin, digestive enzymes (these use aspergillus in the production process) and multivitamins (these always include fermented ingredients). Some of the supplements he can currently tolerate are Life Extension Benfotiamine and Pyridoxal 5′-Phosphate, MegaSporebiotic, Iodoral, Calcium Carbonate, Folinic Acid, Kirkman Vitamin D3, Dr. Maxwell Alpha GPC Choline + Uridine and Bronson Vitamin K2 (K2 as MK-7). The vitamin K2 was the real game changer as it resolved the enuresis and blue fingers/toes (I think it resolved by using K2, vitamin D and calcium carbonate – all 3 work together synergestically to resolve calcification of arteries).

  3. Thanks for sharing your story. In fact, I would never have thought that such a reaction to anything could occur. I really sympathize with you and hope that you will find the cause of your illness and will soon be able to eat normally. In fact, we do not even think about the fact that this function of our body can break down and then we will have to look for a way out. I believe it exists in your situation as well. Strength and patience to you! https://discovercbd.com/collections/delta-8

  4. Hi I am in the same situation. I am on IV nutrition.

    I can’t eat or drink as my whole system has shut down.

    If I eat anything I shut down. I can’t tolerate any suppliments as my body shuts down it’s thinks everything is a danger.

    I’m getting no where.

    Annmarie

  5. Russ – I am so very sorry you’re so sick. When I read your blog, I thought of a possibility for you: oxalate toxicity. Are you familiar with this? If you’re on Facebook, look for a group called “Trying Low Oxalates (TLO)”. I’m also happy to share what I’ve learned along my path of oxalate toxicity. It’s a long road to come back from oxalate toxicity, if you have it… but it IS possible. It’s a bit of a complex protocol that involves supplements/minerals/probiotics/etc. to address it from different angles. Please let me know if you’d like to talk about it…

    • Thank you Christine. Oxalates may be an issue but I haven’t had any in my diet for over a year since I haven’t been eating vegetables. My last OAT test showed high oxalates when i was still eating a fairly normal diet. Also my kidney function was a bit impaired and improved considerably after I cut out oxalates and started getting regular vitamin infusions. So at the moment oxalates are not really an issue. Its more MCAS and whatever dysbiosis and chronic infections I have

      • Russ, I am not an oxalate expert, just a fellow traveller through the nightmare of chronic illness. I have Ehlers-Danlos Syndrome, hypermobile type (hEDS), MCAS, POTS, Vasovagal Syncope, Hashimotos, and Hereditary Hemochromatosis. I’ve had SIBO a couple of times as well as reactivated EBV/CMV. Your case is certainly challenging because of your limited food/med/supplement tolerance.

        That being said, however, oxalates are likely still very much an issue. The body attempts to protect itself by pushing oxalates into the tissues to keep them out of the kidneys. Ironically, the body also seems to store oxalates most often in places where there has been prior injury. Just because you’re no longer eating things with oxalates in it, doesn’t mean you aren’t still oxalate toxic. It can take many years for the body to release oxalates from all the tissues, especially when it is done conservatively so as not to cause to much added pain/discomfort.

        There is also a histamine/MCAS connection with oxalates (as well as with salicylates), which also might be impacting your food intolerances. I’m not sure how wide your bandwidth is to do some reading/studying on this topic, but the FB group I mentioned has many resources.

        Regarding your suspected gut infections, do you know if you can tolerate grapefruit seed extract? how about oil of oregano? Those are both looked at as ‘natural’ antibiotics. My mom had been coughing for years and stumped the doctors who had thrown so many antibiotics at her. After only a week on oil of oregano, her coughing eased – and finally stopped w/in two weeks. I’ve personally used grapefruit seed extract myself with very good results. When I had a comprehensive stool test when I had SIBO, the recommended treatment for many of the infections found was grapefruit seed extract. Another natural treatment that some people have success with is Biocidin. I tried it a few years ago and it definitely helped – it is best taken at the beginning of the day, followed by a binder in the afternoon/evening to remove the die off.

        Have you attempted any binders like Zeolite, activated charcoal, or bentonite clay? Often our histamine bucket will fill up when we are in a constant flare. Even if we stop the intake of trigger foods, the bucket can remain full and cause problems, In addition to the binders, taking DAO supplements (or eating mung bean sprouts), or high dose Vit C if tolerated can help empty your bucket.

        I know many of my suggestions are oral intake, so they may not work for you or you may have already tried them. But I wanted to share the ideas anyway in case you see a clue in there for you. Let me know if you have any questions. Most of all, I truly hope you can find some relief.

        • Thanks Christine. I don’t believe oxalates are the main issue for me. my levels also went down to nothing after cutting them out. I cant tolerate any herbs like oregano or GSE. anything plant based will flare me up now . I used to take these things as well as biocidin and did well with them until i became more reactive. a few years ago i took 1 drop of biocidin and i had gastritis for several weeks. one of the ingredients in there is like aspirin it will burn a hole in a weak stomach. I started taking zeolite at very very dilute doses and am not sure but it might be causing headaches and exacerbation of my vestibular problems. no idea how since its so dilute (1 drop in 1 liter of water and then a small sip from that). right now i am using the ampcoil system and am going to explore peptides and possibly homeopathy. i still believe the gut infections are driving all of this. i also tested pos for blasto on a stool test but very small amounts and it showed up in the past as well. not sure if thats the main issue but could be contributing. thx for the help

          • you’re welcome, I wish I could have helped more. I’m not sure if you’ve heard of Doug Lindsay (he did a TEDx talk), but he fell severely ill and was bedbound for 11 years. He figured out what was wrong with him and worked with Drs to design a surgery that helped him immensely. He now helps complex cases figure theirs out as well. I have no idea what is fees are, but I think he offers a complimentary consultation so he can talk with you and see whether he thinks he can help you or not: https://www.lindsaycenter.com/

  6. You sound like me. I’ve ended up on IV nutrition. I can’t eat or drink without passing out. I can’t eat a thing as my motility is so slow. I’ve had sepsis which means more antibiotics. I also got covid and somehow in all of that fell pregnant with twins. I just hope they are ok. I worry due to my lack of nutrition they could end up very unwell

  7. It sounds like you are thiamine deficient from eating white rice often, look up beri beri. Start having brown rice instead and take 100mg thiamine daily.

    • cant tolerate brown rice- thiamine levels are ok since i get nutrient IVs and micronutrient test showed sufficiency

  8. So quite obviously you have Mercury Poisoning, and you will never be able to fully recover your Gut health, thus your health, heal from Lyme, Mold, FQ Toxicity, etc etc until you deal with it. I’ve seen thousands of people in your shoes, and once things get too bad, all normal functionality just stops working, its a very deep hole to crawl out of to be sure, but it can be done. People can stabilize in many various ways, for a time, with a lot of hard work and research, but to be TRULY healed and STAY healed the intracellular and extracellular Mercury needs to be chelated out. (Fluoroquinolone toxicity makes stabilizing in these cases extremely difficult).

    Having said all that, someone suffering to the degree you are can not just start throwing chelators at the problem and hope to get better, for most that is a recipe for disaster, some get lucky. Most would be best off finding an experienced Health Coach to work with and/or a Functional Doctor (just ignore their Metal chelation advice many get further damaged) to help them stabilize and prepare for chelation, and forgot Western Medicine Doctors completely they are not only NO help but most often detrimental to anyone with a chronic illness.

    There are MANY bad ways to chelate (Naturopaths & Functional Docs use this unfortunately and ignore other perils related to this, otherwise they are great Doctors generally), and only a couple truly effective ways, and unfortunately not one that works for everyone it seems. NBMI is a really good chelator and very safe, best available, there is the lowest amount of re-distribution possible when using it compared to ANY other way. As with everything for very sick people, they should start very slow and listen to their body. Good healing to you

  9. Russ and Martin, I really think you should listen to Dr. Lonsdale about the nutritional IVs. While the Lonsdale/Marrs book is very expensive, Dr. Lonsdale has a couple of other books available used on Amazon that are very affordable–and more layman-friendly.

    I am 60, and I lived the life you are both describing–and unfortunately, so has my entire family. All of us have been to a million doctors, and not only did we not get any real relief, but they often made things worse.

    I took all kinds of probiotics for years. I have done countless rounds of antifungals to fix “yeast infections”. I have cut out all carbs, ground my own grain, grown and juiced my own wheat grass, and on and on and on.

    Then I found this blog. My whole family is a textbook case of thiamine deficiency. And yes, allithiamine and a good multivitamin is fixing ALL these problems. The most important one is gut motility–when the gut is functioning properly, all the other gut issues just go away. My tongue is pink for the first time in 30 years. The whole digestive system is functioning as it should be. Without constipation, nothing has a chance to rot in your body and cause all the gut issues that everyone is fighting today.

    Take a look on this site at Elliot Overton’s article “Beyond Deficiency: Using Thiamine as a Metabolic Stimulant” to get a look at how thiamine deficiency could be causing these “sensitivities” we all seem to have. My son, at age 8, tested “allergic” to 31 foods on an ELISA test. It was insane! Yep–we tried to cut them all out. Not a good idea. The problem wasn’t what he WAS eating, it was what he WASN’T eating. Also, my daughter has a HUGE problem with glutamate sensitivity; we all do actually. We are awake all night if we eat anything with “yeast extract” (that’s MSG by another name) or even high-glutamate foods like parmesan cheese. Not even a little on pasta. Overton addresses the link between glutamate sensitivity and thiamine in his article.

    I hope you find a fix for your problems. I understand what a very hard road this is. I wish I had known this information many years ago before it did such damage to our lives.

    One more thing–our health was stable until some very stressful events happened in our lives–job loss, many moves, pesticide exposure. Dr. Lonsdale reminds again and again, don’t underestimate the impact of stress in your life!!! Thiamine, a good supplement (I use Alive! Pea Protein Shakes in our household) and LOWER THE STRESS IN EVERY WAY YOU CAN. Electronics are a huge source of stress on the brain. Lots of studies coming out that show electronic addictions are as damaging as alcohol, which is a known and well-studied enemy of thiamine. Again, good luck!

    • It seems to me that many people are listening to half-baked “pseudoscience” as a cause of their mysterious illness. Unfortunately it is often a reflection of the physician’s ignorance of body chemistry and also a reflection of his/her training in medical school. It does seem to be strange that nutrition, without which we all die, has been neglected as a cause of illness when it does not meet the demands of physical and mental health. To call our book “too expensive” neglects the fact that it took years of hard-won experience and that it took a long time to put it into print. Also, Dr. Marrs and I receive relatively trivial royalties while the publisher makes the money. I would suggest that, before a comment is made on this website, the commentator should see some of the previous posts in order to gain an impression that we are reporting some massive changes suggested in the practice of medicine.

  10. I would say it’s worth looking at Paleomedicina protocol
    They are based in Hungary, and have made a lot of progress in treating serous illnesses with an animal fat / meat based diet.
    Also I’ve read that eating kidney can be good for histamine issues.
    Good luck

  11. I have lived your symptoms. I chose to see a Mast Cell Activation Syndrome specialist. There is hope and relief. Your histamine/cytokine/trypnase levels need to be lowered through antihistamine protocols. Can be easy as OTC antihistamines. But the best drug is a compounded drug called Ketotifen. Insurance won’t pay but it worth every cent if it works for you. 1 mg/ 2x a day helps most. Takes 4-6 weeks before it becomes effective so count off the days and don’t give up on it. After 3 months protocol, evaluate how you feel and if want to continue. Some people stay on it, some take it when there are flares. Ketotifen is used in other countries and it is well known for its effectiveness. The USA is behind the ball on this one. Canadian pharmacies will charge much less than US. Best of Luck.

  12. 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

  13. “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.

  14. 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.

    • I would like to point out that candida albicans yeast uses thiamine as a substrate for reproduction. So during acute phases of yeast infections in the eye or other tissues thiamine restriction is better than supplementation. Maybe even anti-thiamine oxythiamines for persistent pathogens that utilize thiamine as a substrate.

      • i am deficient in thiamine and i need it especially now. i get it in my weekly IV but am going to see if i can tolerate it in supplement form. having visual and neurological issues now and my doc wants me to try to increase it. candida is not a major problem for me now its mold and lyme and bartonella

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