Question for Gabes and/or anyone else that has lichen schler

[jlbattin]

So, I was diagnosed with lichen schlerosis long before I was diagnosed with MC. About 4 years ago, my dentist made me go get some biopsies done in my mouth (and I was pretty certain that it was lichen planus), but I complied so we would know for sure, and sure enough, it was right. So, my first question is do any of the rest of you that have lichen schlerosis also have lichen planus in your mouth?

I just got home from the dentist and she said to me, "Have you had thrush before?" To which I replied, "That's not thrush; it's lichen planus." It is worse than I've had it in some time; however, it's not painful, and it usually goes down when my flare is over. I've had a rough couple of months trying to keep things on an even keel and haven't felt the best, and I know it's all related. She looked it up in the book and was ok with letting me leave without doing anything. I would need to go back to my dermatologist anyway, but there's really nothing you can do for lichen planus. It is just there!

I was just curious if any others of you have had this experience also.

[Gabes-Apg]

I have not had lichen planus, but I have been doing things like brushing my gums with Zinc and using lingual CoQ10 to help my dental health/gum health for the past 5 years. I also change my toothbrush frequently and use natural tooth paste (no chemicals, fluoride)

I have had a lichen Schlerosis flare this past fortnight, worst one over 2 years. interesting how the body /immune system reacts at times.
my current GP is not familiar with lichen and wants me to go to dermatologist for follow up (I havent been since the LS was Dxd in 2012)
I have been struggling a bit the past month after some major stress, my digestion has been ok, so interesting that the weak point was skin/LS.

[jlbattin]

I'm struggling too and not necessarily with my gut either, but more with my sleep and my skin also, which I can chalk up to stress also.

I'm going to try some of your ideas for your mouth...........can't hurt, I'm sure..............

Thanks for your help and response!

[Patricia]

I have not been diagnosed with lichen, but I was diagnosed with thrush in my esophagus shortly before my LC diagnosis. I have been on a super strict diet for about two years now and started feeling great this spring (despite a very stressful and challenging past year). And then we went on a trip to Europe to visit family. I was fine on the trip aside from a stomachache here and there, no diarrhea. My three girls, unfortunately, all had frequent diarrhea presumably due to cross contamination (they are all three strictly GF and mostly DF but staying with my in-laws who were clueless about their dietary needs was not easy, eating out a few times didn't make it better). The girls' diarrhea got better when we came back home, within a week or two they were back to normal. For me it was the opposite. After getting home, I started having diarrhea/loose stools/pencil thin stools/more frequent BM. There are days where I have normal BM, but many, many days where it is all but normal. I have had a lot of stomachaches, lots of gurgling/popping sounds, and I don't seem to tolerate even small amounts of sugar anymore, such as a little bit of dark chocolate. It's been two months since we have been back and unfortunately, despite a super strict diet (only rice, potatoes, lamb, wild seafood, avocados, olives, bananas, some cooked greens or squash) I am still not where I was this spring before the trip. The rash that I have had on my right cheek for 1.5 years had disappeared this spring, and came back after the trip. The muscle twitching that had finally disappeared this spring came back. It's so interesting how everything is connected to each other. However, what I have been having for the first time since my LC diagnosis two years ago, is a weird feeling on my tongue and I can see a coating. For a while I was drinking a lot of strong Darjeeling tea and the coating had a brownish color. When I left all black tea away, the coating changed to a whitish-yellowish color. The look of it doesn't bother me as much as the feeling of it. I can feel the coating as if I had not brushed my teeth in a long time, but brushing won't help that feeling, even if I brush my tongue. Some days it's bothering me quite a bit, other days it's gone completely, I can't feel anything, I can't see anything, and then, all of a sudden it's back again.

Has anybody else experienced such a weird coating on their tongue?

I do believe it's all connected, but I am not sure why I am experiencing it now for the first time and never had it with a flare before?

The last year has been very stressful. One of my daughters started having mental health issues, my Dad living in Switzerland has had a ton of physical health issues this past year with 4 gastrointestinal surgeries (I went back to be with him three times) and just this past weekend he suffered a minor stroke and is back in the hospital.

Sorry for the long post. I haven't been on here as much as I wanted.....But I am always grateful for my MC family

Love, Patricia

[brandy]

Hi Jari,

Paleo mom has lichen planus.

http://www.thepaleomom.com/my-experienc ... at-lichen/

[tex]

Hi Patricia,

I'm sorry to hear that you're having ongoing problems since your return. Did your symptoms begin early in the summer or in August, about the time that the pollen season starts for fall-blooming plants? Many of your symptoms suggest mast call issues.

It may just be a coincidence, but I noticed in the mirror a few days ago that my tongue also has a white coating. I have no idea when it showed up, though. I do recall that back when I was still reacting my tongue looked the same way, most of the time. I eat very little sugar these days, because it tends to cause D. One would think that with low sugar intake, thrush would not be a problem. But ragweed season is in full swing here, and so I have a few other mast cell activity markers, such as a few hives or red, itchy bumps, even though I take an Allegra every day. So I wonder if mast cell activity is somehow involved with the thrush/Candida.

Stress can cause a mast cell reaction, and so can magnesium deficiency. Unfortunately, not much information on mast cells and fungal infections is available. Here's a link to a research overview article, but it only contains a limited amount of information specifically regarding the GI system. In the quote, "MCs" stands for mast cells.

Fungal infection in the gastrointestinal tract

The gastrointestinal tract is one of the preferred sites for MCs to localize, and, in contrast to skin MCs, the number of MCs can rapidly and markedly expand during the course of an infection in the gut; this allows for a high degree of interaction between MCs and gut flora (Mikkelsen, 2010). Candida colonization is associated with several diseases of the gastrointestinal tract, e.g., Crohn’s disease (Rehaume et al., 2010), ulcerative colitis (Zwolinska-Wcislo et al., 2009), and gastric ulcers (Hirasaki et al., 1999). Furthermore, results from animal models suggest that Candida colonization can delay healing of inflammatory lesions and that inflammation promotes colonization as a positive feedback mechanism. As far as the role of MCs in the gastrointestinal tract is concerned, a single report suggests that gastrointestinal Candida colonization promotes sensitization against food antigens, at least partly due to MC mediated hyper permeability of the gastrointestinal mucosa of mice (Yamaguchi et al., 2006). Although it is quite probable that MCs interact with fungi in the intestinal tract and that MCs can play an important role in host cell defense against gastrointestinal fungal infections, these issues remain to be clarified by future research.

Role and Relevance of Mast Cells in Fungal Infections

Note that Candida in the GI tract promotes leaky gut, which leads to increased sensitivity to certain food peptides. Your mention of muscle twitching makes me wonder if you might have magnesium deficiency. Magnesium deficiency can cause problems with increased mast cell activity.

Love,
Tex

[Patricia]

Thank you, Tex. Very interesting and informative as usual!!

My symptoms started mid-July. Initially, I had a lot of upper abdominal pain and also several instances of painful lesions in my mouth. Both have pretty much disappeared and were replaced by the regular MC related abdominal pain, gurgling, loose BMs and that weird coating on my tongue. I went back to my naturopathic physician for acupuncture and she was not overly concerned about the coating on the tongue. She said it showed again more "damp heat" in my system, made worse by whatever triggered this latest episode as well as the hot weather outside. She and my acupuncture friend in Switzerland both already told me last year that I had a problem with what Chinese medicine refers to as "damp heat" (a typical sign of gastrointestinal issues).

Right now the pollen is high around here, so that might very well be another factor!

The reason why I went to my naturopathic physician is because she is always optimistic, does not order any unnecessary tests, and the acupuncture seems to help me overall. Each time I go see my gastroenterologist he orders tests, and every single time he orders some tests to rule out yet another cancer I might be suffering from, which causes me a lot of distress more than anything. Fortunately, he never found cancer so far!

Aside from the fructose in bananas (two a day) I do not have any sugar intake at all, so I didn't think thrush was really possible. It's a weird feeling on the tongue. It's kind of like when you drink something too hot and burn your tongue and for a day or two you can feel it. But I know I did not burn my tongue and certain days I can feel it and other days I cannot feel it.

I agree that I am probably deficient in magnesium again. I did take the magnesium oil with me but hardly ever used it. It was just not very practical applying it, waiting 20 minutes before showering when traveling and sharing the bathroom with many other people. I am back to applying the oil every day and taking magnesium glycinate. It just goes to show how little it takes to upset the equilibrium!

Thank you for your input and support!

Love, Patricia

[tex]

Patricia,

Your mention that your tongue feels as though it was burned rang a bell. Does anything in the thread at the following link fit your symptoms?

two bizarre things I'm dealing with - Tex can you read this?

You're very welcome.

Love,
Tex

[Patricia]

Fascinating, Tex!

My tongue is painless, it does not feel like I am currently burning it with a hot liquid or the sensation while eating super spicy foods. It just feels like I burned it the previous day and now there is that weird and annoying sensation on it from burning it the previous day. But I know I did not burn it.

My husband thinks it might be triggered by some food I am eating. But I have very few safe foods that I keep eating and this is the first time it is occurring. Maybe I developed a new food intolerance? Or it is just another sign of the relapse going on in my intestines? The sensation does correlate with the visible coating. Some days, I don't feel it and the coating is barely visible or gone. All of a sudden the sensation is back and when I look in my mouth I can see the coating on the tongue.

Thanks again!

Love, Patricia

[tex]

Patricia,

I have a hunch that not everyone feels pain with this condition.

Burning Mouth Syndrome

Burning mouth syndrome (BMS) is a relatively common and harmless problem that affects peri- and post-menopausal women primarily (although about 10 to 20% of the patients whom we see with this condition are men). While it is an annoying condition, it is typically not progressive (does not get worse and worse), does not represent a form of cancer, and cannot be transmitted to anyone else. It often waxes and wanes in severity, and it has not been associated with any particular preceding event.
Even though the condition is called burning mouth syndrome, it really is a problem that affects several types of what are called sensory nerves in the oral region. The senses that can be affected include:

pain: This is the burning or scalded sensation that many patients will experience. In many cases, the burning sensations are least notable in the morning and build in intensity throughout the day.
taste: either loss of taste or taste phantoms, tasting salt, bitter, sweet or sour even when there is nothing in the mouth
texture: a sensation of swelling, sliminess, dryness or roughness.

And there's also this possibility:

Hairy-Coated Tongue

Accumulation of keratin (the normal product of the top of the tongue) on the tongue can result in what is known as coated tongue, a harmless but sometimes annoying condition. If the amount of keratin is such that hair-like projections are formed on the top of the tongue, the condition is referred to as hairy tongue.
Black hairy tongue represents an overgrowth of certain pigment-forming bacteria which give the tongue a dark appearance. Black tongue may be a result of smoking, poor oral hygiene, use of certain antibiotics (penicillin, tetracyclines) or the chronic use of antacids and some types of mouthwash. Most of these causes can be directly attributed to changes in the bacteria that normally live in the mouth.

Some things you can do to remove the discoloration include:

Use a tongue scraper
Brush your tongue with a toothbrush twice a day
Rinse your mouth with dilute hydrogen peroxide (one part peroxide to five parts water). Be sure to rinse with water afterward.
Brush your tongue with dilute hydrogen peroxide (one part peroxide to five parts water). Rinse with water afterward.

Common Mouth and Tongue Conditions

Love,
Tex

[Gabes-Apg]

Jari and Patricia

this study came into my facebook news feed today! (coincidence or what?)

http://www.ncbi.nlm.nih.gov/pubmed/27324515
RESULTS:
Patients treated with chamomile showed significant improvements after 4 weeks for pain (P < 0.001), burning sensation (P < 0.001), itching (P = 0.011), OHIP-14 (P < 0.001) and Thongprasom index (P = 0.001); 92% of patients treated with chamomile showed a partial or total response, while only five subjects (17%) in the placebo group showed any improvement.
CONCLUSION:
The topical application of 2% chamomile gel is an effective treatment for OLP.

[jlbattin]

Very interesting, Gabes.........thanks for that info..........

I did a search for that chamomile gel and can only assume it must be prescription................might have to go back to my dermatologist!

[Patricia]

Thank you, Gabes! Fascinating!!

I still have a pharmaceutical book called "Teedrogen", which literally means "tea drugs", from writing a thesis. It is about many different plants (not just the usual plants used for tea), whether they can be used as a tea to treat illnesses, whether there were any studies done, how much and how often to use it, what their effect is, etc. I looked up chamomile. Here is a shortened and translated version of what it says about chamomile:
It is considered anti-inflammatory, spasmolytic (suppressing spasms/relaxing muscles), carminative (relieving bloating/flatulence), and stomachic (promoting appetite/assisting digestion). Evidence that it has an anti-inflammatory, spasmolytic, ulcer-protective, antibacterial, fungicidal effect has been confirmed repeatedly. Oral administration is primarily used for gastrointestinal symptoms (gastritis, enteritis, colitis, bloating, cramp-like gastrointestinal symptoms) as well as menstrual symptoms. It can be used externally for skin and mucous membrane diseases as well as inflammations and colds of nose, pharynx, and bronchi (steam inhalations), in the mouth (rinsing), as well as for erythema of the skin (compresses, bath, ointment). It goes on describing how the different chemical components of chamomile work. Dosage: pour hot water (about 150 ml) over a heaping tablespoon (3 grams) of chamomile blossoms, cover, and let steep for 5 to 10 minutes. The book recommends drinking a cup of freshly prepared chamomile tea 3-4 x a day for gastrointestinal diseases. It mentions that one should carefully inspect chamomile tea bags. They should contain only blossoms, not the rest of the plant. The rest of the plant is okay for consumption but it does not contain as much of the essential oils as the blossoms do and therefore does not provide the desired effect.

I will go buy some chamomile tea and start drinking it regularly. Can't hurt!

Love, Patricia

[Gabes-Apg]

Patricia
thanks for taking the time to type that out and share it with us

I dont think i can tolerate the tea orally (via gut) , but i may use this topically as I currently have sclerosis /dermatitis type reaction in my scalp at the moment
heading to the health food store today

love this group of people and sharing of info XO

[jlbattin]

Where can you buy chamomile blossoms? And I'm asking this without even having done a search! But thought maybe Patricia would know?