Lichen Planus and Vegetarian

Thank you for your response, which I found quite interesting.  Yes, it's an over active immune system not a weak one that is causing the problem.I also live in the US (TN). I am sure I have UK heritage generations back. You have educated me on HLA B57, as I have not read about that before. 

How were you tested?  Did you pay for an independent test? 

I am curious as to if I have it, as well.    Other than LP/OLP, I have no indication of another illness.  I am in excellent health, and I take no medications.  I don't drink alcohol.  I do take a multi-vitamin, and additional Folic acid, Vitamin D and Biotin.  The only other problem I have, which may be related to my immune system, is my hair falls out at an alarming rate.  It does grow back, but then starts the process all over again within six months intervals.  This started back in 1990, but it was after I went through a shocking incident where I just shut down for a few days.  Unfortunately it never stopped. 

As you say, sometimes it is just random.

My ancestors were mostly from NC and VA, dating back to the 1600s.  So with the English, Welsh and Scots-Irish in TN as well, you may have those genes.

I have an unusual blood type, so I give blood regularly at a center with a cancer treatment facility, especially for children.  Sometimes they have asked the blood donors if they would be willing to do a bone marrow donation if needed, so they tested me, and that is how I found out.  Have not been asked for that yet.  The HLA (you inherit one set of genes from each parent) is what is used to test compatibility for bone marrow, kidney, etc., transplants.

Because the HLA B-8 is associated with celiac disease (and Type 1 diabetes, autoimmune thyroid, and several other autoimmune diseases) I paid about $100 on my own for that test.  I had read many articles on OLP, and my mouth was really bad after going off the pred, and I was desperate for anything that might help. Some of the articles said as many as 30% of people with OLP had celiac disease. I did worry it would come back positive and I would need to go on a very restrictive diet, but it was completely normal.  So as to restrictive diet - good it was negative; as to horrible OLP - bad there was not some hope for a quick fix.

I don't drink either, but a sibing and a cousin have hemochromatosis, and I had elevated iron for about 10 years. Now it's normal again, don't know why. I too try to eat right, exercise, etc. and take many of the same vitamins that you do.  Other than the LP/OLP, asthma and arthritis, I'm pretty healthy for mid 60s.

I was upset when the rheumatologist I saw insisted I must have hep-C to have developed the OLP.  I told her I give blood and they test regularly for that but she insisted.  Of course, the test came back negative (I happily lead a very, very dull life and there was no chance I was exposed to hep-C).  Turns out less than 5% of all people with OLP have hep-C anyway.

I also lost a lot of hair last fall.  It came back, but so much fell out over one month I was getting panicky.  There is a form of LP that causes alopecia, and I have the off and on head rash, so one more thing to worry about!

Thank you. That was interesting. And Yes we have an over-active immune system. That doesn't necessa

Doesn't necessarily mean it knows to react when we need it. It's confused. It reminds me of Don Quixote. My Helper T cells are off fighting Windmills when they should be fighting other things. I have Arthritis and Fibro. Apparently it also means I can't type well (see above). I also have Lymphocytic Colitis which looks just like Lichen Planus' microscopic slides except it's in the mucus membranes of the colon instead. I cannot eat anything good for me. Except meat. I cheat all the time. Never was Carnivore on my bucket list. I pay for cheating. I AM OF ANGLO-VIKING DESCENT. JUST 2nd GENERATION AMERICAN. Maiden name was Knight. My Grandparents on mother's side were Swedish. I wonder if this is X Recessive Gene dominant. Thus more females than males. How did you learn about HLA B57 Super HLA 8 alleles ??? I would love to know. I think you are truly onto something here and want to help/know more. I have a Med Center to work with. Regarding genes, I just needed to know a specific and you supplied that!!

The scalp LP doesn't necessarily lead to Alopecia. There are two kinds of scalp LP. One attacks hair follicles and one doesn't. I hate Scalp LP though. The only thing worse is inside of ears and the eyelids.

QUININE works by NOT suppressing the immune system, but rather by stopping the cells from replicating, including immune cells. That's how they stop Malaria and let the initial flare up run itself out -- there's no 2nd generation to propogate the disease. (Shingles virus med works the same way). That's why those classifications of meds work on Lupus. Now those new, synthetic cousins of QUININE are being used for other auto-immune diseases. There are side-effects but, not as bad as QUININE in its pure form from the Cachona Tree. The side effects of any of them, to me, are not as bad as the immune-suppressing drugs.

I hope this doesn't get deleted. A lot of my stuff does cuz I mention specific drugs. I tried not to mention brand names this time. But a Cochona Tree is a Cochona Tree. There's no way to get around it.

I tested negative for Celiac Disease.

Hi JayeKaye I was really interested to hear about quinine. I have been advised to take immunesuppressants and would rather go down a different route. Have you actually taken them? If so how bad were the side effects?

Not yet but I will when my Medicare Insurance goes into effect on Jan 1st 2016. I've read a lot about it though. I truly fear Immuno-Suppressants. If it works for Lupus, it should work for this. The biggest problem is the narrowing of the retina. But that is a rare side effect and even more rare with the newer class of drugs. You get an exam from the eye doctor before you start the medicine to establish a baseline. Then go back every 2-3 mos to check if anything's changed.

I would add Vitamin B-12 and Beta Carotine to your Vitamin regimen ASAP if your doctor approves. I think it may help greatly.

All you VEGANS out there reading this thread . . . you need to take B-12 !!!!!

Wow, I learn so much here from everyone.  I have had some really bad swallowing and indigestion problems (solid food feeling stuck in my lower throat/esophogus) for the past 6 months.  My primary doc said it looked like my epiglottis (the little hangy down thing in the back of my mouth) was almost gone/eroded (with the OLP white lesions on it) and sent me to a GI doctor as you can get the ulcers from OLP in your esophogus too and it can cause strictures and difficulty swallowing.  So now I have to get a biopsy and endoscopy to see if that has happened.  That sounds like your colitis problem.

My mom developed pernicious anemia in her 60s and had to have B-12 shots in her stomach once a month, and I had a B-12 deficiency once when I was a child, so I take these B-12 drops (cherry flavor) I hold under my tongue so they absorb through the mouth.  I have also been taking the lycopene and something else (?) for eyes beta carotine vitamin because mom had macular degeneration and after the cataracts I want to avoid that.

A brother in law had lupus and he got both the steroid induced cataracts like me and also macular degeneration from the Plaquinel, so I stopped the Plaquinel as it did not help my OLP.  If it had helped I might have kept taking it.  Darned if you do and darned if you don't!

Well, that's good to know. I'd totally forgotten B-12 came in drops that could be placed under the tongue. I have Lymphocytic Colitis and malasorbtion is a big problem. So sorry to hear about your reactions. I wonder if they'll delete your post cuz you mentioned the drug that rhymes with Whack-a-Will. Speaking of such, these disease reminds me of the game Whack-a-Mole.

I'm confused by what the montors allow on the website.  Some people have listed "practioners" by name and location, who are not medically licensed and who might be considered the noise a duck makes, and have gotten away with giving them free advertising, while they delete the names of comon drugs we take.  So I guess I have to type out "hydroxychloroquine" from now on!

Yep. Or Whack a Will. I'm confused also.

The medicine I used to treat OLP turned out to work extremely well but, when I let you all know, they deleted it. It was cheap , older, homeopathic which is something I do NOT necessarily abide by. And my OLP was gone in a week. It was just a fluke that I even thought of it. The Pharmacist had never heard of it and had to special order it.

Though I live in TN now, I am originally from Norfolk/Virginia Beach, VA.  Lived there all my life until four years ago when we moved here to be near our son and his family. My parents were from VA. as well.     Although I don't think I have celiac disease, gluten free cereal is easier on my system  so that's what I eat.  Bran and other cereals make my belly swell.  I was really sick 20 years ago with reflux, and still have flareups ocassionally.  Other than that I am very healthy.  The hair falling out is disturbing.  This last time it got the thinnest it has ever been.  Waiting for it to grow back is frustrating.  I try to be thankful I don't have a terminal illness.  Just wish there was an easy answer to stopping this LP/OLP.

Thanks for bringing B-12 up.  I forgot to add that I do take B-12.  Yes, it's very important to vegans and vegetarians.  My husband is a vegetarian and he is deficient in it.  I'm not, but take it to be on the safe side.  I don't take Beta Carotine.  My blood work always comes back fine, but I will look into that.

Beta Carotene is sooo amazing for hair, skin, but especially nails. My nails tend to split BELOW the quick so nail health is important to me. Because I also have Lymphocytic Colitis, and it had spread into my Small Colon prior to diagnosis, I have an ongoing problem with malabsorption. B-12 is so necessary yet so vulnerable in this condition. Vitamin pills have just as much trouble absorbing. So someone, I think on this site, just reminded me this weekend that some Vitamins like B-12 can be administered with liquid drops under the tongue. It goes directly into blood stream. I immediately called my Pharmacist to start researching that. (Not readily available).

Oh, I saw that too, but did not realize the reason for the liquid B-12.  Please let me know what your pharmacist's answer.  I'm a little confused on the hydroxychloroquine.  Is this something I can get without a prescription in the US?

I meant to ask when you had the celiac test, was it the one where they biopsy your stomach?  It would cost me a fortune to have that done.   As a vegetarian a restrictive diet would be hard for me, but I'd do it in a heartbeat if I had to.   Years ago a rheumatologist tried to tell me I had rheumtoid arthritis, which I did not.  All my tests proved negative, and he still kept insisting I did. Somestimes doctors have a mindset and don't want to see a bigger picture.  My dermatologist told me not to go gluten free, just to cut back on gluten and see if it changes anything.  I'm not sure that would even work.

No. You need a prescription from a doctor.

Just like you would need one if you had Malaria.

I meant to ask you . . . What are you confused about regarding Hydroxychloroquine ???

I will let you know today when the head pharmacist calls me back regarding liquid Vitamins.

Also, I wondered what your symptoms were that your doctor thought you had Rheumatoid Arthritis ??? It's painful and the first two sets of finger joints are red, swollen, often warm to the touch. However, sometimes autoimmune diseases are present in some form prior to fully manifesting itself. People can think back, even to their Youth, and remember symptoms that were temporary, problematic, or just weird. And much later they finally test positive for something. LUPUS is like that. The doctors will say "The diagnosis eluded us for so long." or "Lupus is so elusive."

My Celiac Test was done via stool sample sent to the lab. Although it's not unusual for people with my LC disease to have problems with Gluten and/or Celiac Disease. My LC was diagnosed when biopsies were taken inside my colon during a Colonscopy. On the surface, my colon looked fine except narrower than usual. My disease is below the surface of the intestinal wall in BOTH the large and small colon. They are swollen and enflamed below the surface. I highly suspect my Villi are killed off due to inflamation. Without meds, a meal can go thru me in 20 min. Thus the Vitamin drops directly into bloodstream under the tongue. Also Vit B needs Bile and Villa to absorb it. Sometimes Bile goes right straight thru me also.

I am starting to pay closer attention to Gluten since being on these sites. My LC-site homeys, called "Potty People" (tm) swear by going Gluten-free. The site founder even wrote a book about it.

How old are you just out of curiosity ?? BTW my CELIAC Test was negative.

Sasr, did you read my blurb to you about LP causing hair loss, sometimes ?? There is a type of LP that does that. Alopecia (hair loss) is also an Autoimmune Disorder all by itself.

Doctors are clinically looking more and more at "Multiple Immune Disorder Syndrome".

Okay I'm going to bed now. Good night.

Hi Julia,

There is an FAQ section linked at the bottom of every page which goes to 

http://patient.uservoice.com/knowledgebase/topics/59133-discussion-forums which should answer your queries. We do not remove drug names like Plaquinel.

I do not read every post so if anyone is listing names etc that can be interpreted as advertising then users need to use the "Report" link to draw it to my attention and I will delete posts if required.

Regards,

Alan

So what happened to my posts about ST 37 ?? That med cured my oral Lichen Planus in just days. There is no other name for it. It's not a prescription med. I don't get anything out of it $ and until recently I hadn't used it since I was 14. Fifty years ago. Do I doubt I was advertising. It's so ol' timey that the Pharmacist had to research it. One of my friends on another site used it and couldn't believe the difference it made. And it's cheap!! My doctor had me bring him the box it came in so he could study the ingredients. That's how I found out it's homeopathic. You Brits do seem to like Homeopathic.

I found some at rhymes with hallmark (online), is this it?

Thanks for the clarification.

I have had arthritis since in my early 20s -- had spinal fusion at 24, and after a 2nd trimester placental abruption and pregnancy loss that was diagnosed as autoimmune (per pathology report on placenta and autopsy on baby), the doctors were sure I had lupus or antiphospholipid syndrome, but I tested negative for both everytime.

Have had arthritis in my hands, knees, elbows, feet ever since, several more joint surgeries and a second fusion of the spine with rods and bone grafts.  One foot and 2 hand surgeries.  Lots of cortisone shots in my joints and draining of snovial cysts.

Then my brother was diagnosed with severe arthritis in his early 40s (hands, wrists, elbows) and the docs were convinced he had RA, but he always tested negative.  Nonetheless, they pumped him full of gold shots pred and methatrexate (which damaged his liver and gave him malnutrition).  Did not help the joints.

There is a type of early onset inflammatory osteo-arthritis that many miss (it is somewhere between RA and osteo).  Plus, I'm not sure they even know all the kinds you can have and all the individual variations.  If it's not a check-off diagnosis on their one page health insurance sheet, I'm not sure they even consider it.  Most docs are woefully uninformed about genetics too. 

I had the blood celiac test (if that is positive, then you go on to the biopsy, but mine was completely negative).  That said, I'm not a big starch eater.  I eat things like walnuts or sweet potatoes, not bread (especially white).

When we were kids, my brother always had hives and I always had eczema (sometimes we would get a bit of the other).  He had an allergic reaction to almost every antibiotic and tetnus.  We are both allergic to bee/wasp stings, some shellfish, sulfa drugs and I hugely react to even mosquito bites.  Once I even had to go to the emergency room because I had massive hives all over my body.  We never knew why or what triggered them.

Just really reactive immune systems.  I also spit stitches terribly.  Even low reactive orthopedic thread.  My immune system just goes nuts and produces massive inflammation.

I am so sorry for the problems you've had and your loss. And I thought I was young at 39 for Arthritis. Have you been tested for Lupus ?? I'm sure you probably have. Let me know how things go for you. Did you read where they said you can type PLAQUINIL?? Or was that somebody else ??

I'm sorry you have been through so much.  I don't even feel I can complain considering how much you have suffered.  Oddly, I too react to mosquito bites.  This past summer I got chiggars, and I thought they would never go away.  Hives can come from anything at any time.  My son, age 40, is having them every so often now.  We are tracking what he eats, but so far have not figured it out.  I wish you the best.  Stay strong.

Liquid B 12 can be bought at any Nutrtion shop. Here in Nebraska that is what we 'd do for the liquid sub-linquil as the grocery stores don't carry it.. You don't need a prescription.

Can you pm me the homeopathic med you used? Please