Young LS sufferer. Scared :(

Always good sense from you Morrell1951! My story is similar to yours as well  I believe the fusing is the scariest part as the doctors watch for the cancer. I now have quite a lot of fusing and it concerns me the most.

What? You gave advice after saying everyone is different. I do not agree with the diet angle and there is no evidence to support this anyway! There would need to be sufficient studies to determine a relationship with food allergies. I attend a top hospital in Melbourne the Mercy hospital for women at a special clinic manned by various specialists and experts and never never have they mentioned food in relation to LS. Having said this, it is always best to have a good diet of fresh fruit and vegetables and limit the amount of rubbish you eat which is just common sense. But to dictate someone else's diet to them is not appropriate. 

Kathleen, I made suggestions, which the person concerned will either decide to follow or not, they are just suggestions, not an order or directive! that is their decision. I must say that I had to smile when I read "Top Hospital in Melbourne for specialists" because the fact that they don't think diet plays any role at all says it all really..still if your happy with them that's all that counts. It is also interesting that you contradict yourself at the end of your post, where you talk about eating fresh fruit and vegetables, and reducing the amount of ''rubbish'' you eat.....which is related to your diet, right? 

Anyway, everyone has their own opinion, ideas, and thoughts, and have a right to share them, especially if they have specifically been asked to do so.

 

The healthy eating is wise for everyone. I have never believed in a connection between diet and LS. We have to be careful to emphasise that we are only patients not experts. I have seen this on a shoulder group forum where people are given terrible advice that threatens their repairs. Listen to the specialists and your own body. People on here only have a tiny bit of experience with no qualifications to advise. 

Kathleen..I think that a significant amount of  woman that post on this site do so due to the general lack of knowledge, help, and guidance from their own doctors!!   I definitely feel like some doctors could do a lot better..

I am not sure why you think people on this site have a tiny bit of experience, many woman here have had this condition for years, and are therefore in a position to give help and guidance to people newly diagnosed. 

Personally this last year has taught me that doctors don't know everything, in fact some aren't very good at what they do!!! which is why you have to make sure you have a good understanding of this  condition, or any other illness you may have.

I fall in the middle of this issue. Sugar is a known exacerbator of inflammation and certainly a candida trigger. Yeast and LS are often inextricably tied. Aside from that, though, I'm afraid that trying to cut out basic foods like whole grains only adds stress, unless you have a diagnosis of celiac disease.

Some doctors are forward thinking especially when there has been so little research on this.  I have both Lichen Planus (mouth) and LS.  Both my periodontist and my regular GP doctor encourage me to look at alternative souces as long as they are not dangerous. They both supported me in my recent 5 day fast. No cure with it...but my mouth totally healed and LS cleared up except for on my legs. Now that I'm eating normal I find it creeping back in all areas...so my next step is to try the diet changes...what's the harm?  I'm determined to beat this. I cured myself of fibromyalgia after I suffered with it for 17 years...so I know there are answers...we just have to find them...and if we don't try...we won't ever find them.  So no...don't do dangerous or foolish things...but if it's natural and you have your doctor's blessing...then experiment a little.  We wouldn't have lightbulbs if no one ever experimented and tried to create them...and there were many failures before we had one that worked.  Keep an open mind...but be smart about what you do. Hugs to all...cuz we need those hugs too.

Common wheat harvest protocol in the United States is to drench the wheat fields with Roundup (Weed killer)several days before the combine harvesters work through the fields as the practice allows for an earlier, easier and bigger harvest.    

I was totally unaware that farmers are spraying crops with poison, and so here is something you should all take the time to read...

I have not found cutting out Gluten stressfull actually,  its really not such a big deal, but I completely understand why some people are stuck on this, and thats fine, each to their own.

Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Morrell, I have tried to post a link to some interesting information, and so I hope the moderator permits that..as I think many will find it interesting.

Renee, I too have both oral lichen planus and LS, a double whammy! I have had good results with homeopathy for the oral lichen planus in the past.  What are you planning on doing? have you given it much thought, are you thinking of going  Dairy free or Gluten free? or something else entirely?  I found  going Gluten free tricky at first, and then after I had removed everything in my kitchen that contained Gluten it all went smoothly...The biggest problem for me was going Dairy free, because whilst most people that have problems with Dairy are lactose intolerant, I discovered I am actually  intolerant to Casein the protein in milk, as apparently the protein (Casein) is almost identical to Gluten on a molecular level. This means that I cant have any cheeses or yogurts, its depressing actually, and it makes going Gluten free seem like a walk in the park.

I would imagine you would  only need to try this for a month or so, and if you do not feel any benefits after that than you can always stop and go back to your normal diet of course, no harm done. 

I'm taking caprylic acid(a component of coconut) right now with every meal and I'm going to start again on a multi enzyme, a 50 billion probiotic (the kind that needs refrigeration) l-glutamine, and berberine (all the aforementioned are supplements) along with a plant based powder mixed up with unsweetened almond milk, a banana  and blueberries. They say to add a handful spinach...I eat a lot of that in salads so prefer not to put it in my shake..that just made be say YUK!  I saw this recipe on tv and it was recommended by a cardiac surgeon as an excellent cleanse. I've started it a couple times but wasn't good on the follow through for one reason or another...so am giving it another try. Read up about the berberine...some really good research on that and read that another patient did coptis which berberine is a component of and she had excellent results with it. One of the things coptis does is increase bile flow so that your liver can be more efficient in eliminating toxins from your body. I'm going to give up dairy...I am lactose intolerant so would be a smart thing for me to do...and try to follow a mold free diet...which is no processed foods and only fresh foods. None of this is easy to even think about, much less do...but I'm miserable and at the point that I know I need to find answers. You usually don't have to be on a drastic diet change for life...but may have to do it for a year...maybe two until whatever this is completely leaves your system. I've read that the only way you may be able to beat an auto immune disease is to reset your immune system. I feel the only way you can really do that is to clean all the bad stuff out so that your body can heal itself. I will continue to post by successes and failures in hopes that others may benefit from the information.

Oh...and my 5 day fast did heal my mouth...but I believe it's only temporary. I brush my teeth mostly with activated charcoal from bamboo and do salt water rinses. Now that I'm pretty much healed I'm using a little toothpaste...miss the freshness that gives your mouth that the charcoal doesn't.  However, surprisingly...although messy, the charcoal does a good job of cleaning your teeth and removing stains...no taste...but gritty and messy. I use a quarter teaspoon in the palm of my hand...dampen my toothbrush and dip it in it and brush. Has kept the flares way down.

Kathleen - what wise words, you are lucky to be seen in the Melbourne Hospital - I know it does have a superb reputation world wide.

Healthy sensible eating is a key to good general health - moderation in all things. Often there IS  no answer to disease or ill health- the medics are not able to cure everything and we individuals have to take charge of our own bodies as far as we are able. We cannot affect our genetic make up or our response to stress. Farmers have been guilty of putting unnecssary antibiotics in  our meat - in order - they believe in keeping their stock in a fit condition to sell. Cows are given hormones to keep them lactating and weed killers and fertilisers ar put on the land to increase productivity, there are so many imponderables that we cannot take charge of.

We are all in differnent parts of the world, different ethnicities, incomes genetic backgrounds and experiences

A forum like this is wonderful to help people understand they are not alone that there are many ways to try to improve their conditions and i said that we can ONLY give OUR own experiences, however i do believe that should be done in a manner that indicates what helps US inidivually.  IF it helps others and that is confirmed by them it improves matters for them too, that is wonderful. In this way we may be able to build up a repetoire of Good Practice.

I agree with Morrell one should NEVER remove staple items in one's diet unless it is confirmed that there is a digestive issue. I strongly believe in impiral evidence, proper research undertaken by scientists - or others with a proven track record. Everything else is anecdotal. Thank you for your sensible thoughts 

...or gluten sensitivity, may I add.  I've just listened to a doctor who has MS and got out of her wheelchair by choosing to eat healthy, cut out sugar and gluten.  Now in her practice she asks patients about their eating habits.  We're living in a time where doctors are wondering whether the things they prescribe, or treat patients with is still in accordance with their oath. No small matter. 

Patients do not get healed - that's a sad thing.  Small wonder people are looking for other ways than what the doctors in general prescribe.  Many on this site have expressed the shortcomings of the medical system.  Doctors are also only human beings, and work with what they have.  We already know that with LS they don't have the best answers.  So it's up to the individual to keep using their 'noodles' to find the best way to live with conditions the medical world has no answer for.  

Let's support each other, please, we were doing so well.  We may have different experiences and consequently different opinions, we all have LS. The art is to make this condition liveable.     

Morell, you mentioned that yeast and LS are tied.. Its interesting you say that as I recently did a stool analysis with my naturopath and she mentioned that I had an overgrowth of yeast - not Candida but definitely an overgrowth. I also have tinea veriscolor - a fungal skin condition which affects my back and upper arms. Numerous people here have suggested a gluten free diet.  A yeast free diet or Candida Diet might also be beneficial. However it can be so restrictive! Especially for someone who loves bread!

Sorry but I have to jump in and defend guppy007 this sight is for information and advice we can't get from the doctors because there isn't enough research on the dieses all together who better to get help or knowledge from then woman who have already experienced the same situation my doctors specialists I might add actually made it worse the only time I started improving is when I started trying things that other woman on here said worked for then not all worked and not all suited me but the BIGGEST improvement I had was when I stopped eating gluten so just to remind you this is a site ment to help others seeking information they can't get from there doctors or seeking support not for attacking people who are simply trying to help

Thanks athena .....of course I was just trying to help the poster, she sounded very scared.   However If some people want to bury their heads in the sand that's fine, but for some of us with LS and OLP we are happy to forgo bread and pasta because we know its crucial to our health to at least investigate the possibility that it may be something we are eating!!! 

As a reminder this is extract from what I posted..

"If you don't start to see any improvements after changing creams and cutting out sugars, then if I were you, I would then consider going completely Gluten free and Dairy free, and see how you get on.  Sometimes it is necessary for you to try these measures, because I do believe that diet can play a strong role in helping relieve or improve this condition. These measures may not work or apply to everyone of course, but for some it is crucial to pinpoint anything that is going to trigger flare ups, and take the appropriate restorative action" 

I cant see anywhere were I dictated what the poster should be doing.  I think in fact its a fair and balanced view.  If you are struggling with LS and OLP wouldn't you want to try something to help your poor struggling body? It is unfathomable to me that people want to shut other people up from offering what might in fact be good and helpful advice..

Finally, if somebody talks to me in such a rude  high handed way than I am going to respond likewise. 

I agree with you, its a storm in a teacup, but people must understand that you cannot be rude to people and not expect the same.

I was just trying to help after all.

And so you were.  Thanks Guppy.

I went to an allergist a number of years ago. He was a retired surgeon. He had a doctor friend who was a doctor for allergies...he saw what this doctor was able to do for his patients by them making changes in their environment or diet. It so impressed him that he returned to medicine as an allergy doctor himself.  He told me that before seeing these changes in people that as a surgeon he thought the only cures were drugs or surgery. He actually saved a number of peoples lives by doing diet diaries and finding out what in their environment or food choices were causing their illnesses. Like several have said...we are all different in some way and what may work for one may not be the answer for another...but ultimately we are responsible for our own health.  I will never totally put myself in the hands of any other person...doctor or otherwise. If I'm told something by my doctor or given a medication I make sure I know everything about it. Which is why I haven't gone the steroid route...but totally understand those that do. My own daughter has been on them a couple of times to calm down a severe allergic reaction...fortunately just short term. I can't imagine having to depend on them for long term and am so sympathetic to those who must rely on them for relief.  I fortunately have found some other things that help and hope to one day have answers to eliminate this from my body...so I will always keep an open mind and will continue to share my experiences in hopes of helping someone else. So glad we have this opportunity to talk with each other to share ideas...and just for the moral support it offers. Take care all.

That is interesting, and I too will never totally put myself in the hands of any other person, and I will definitely read up on berberine that you mentioned in your other post.

Interestingly enough I am suffering with a terrible allergy at the moment, in fact for a while it has kept me housebound.  Its an allergy to perfume, but its severe and I cant use any cleaning products in my house, soaps, deodorants etc,  as any sort of fragrance will give me a migraine.   Its a terrible thing, I am not sure anyone can really understand how debilitating it is because  just standing in the supermarket waiting to pay for my groceries puts me at risk of someone passing by wearing perfume, and one whiff and I am ill.  

Recently though after a lot of research online I discovered a company that produces homeopathy treatment for people like me, and others that suffer from allergies and so I ordered this product and it does appear to be working, I have only used it for a week, but I am optimistic, although I am not sure whether it will cure me or if it is temporary.

I cannot give the name of the product or company that produces these products for severe allergies, but certainly if anyone is interested you can PM.  I agree that it is good to share ideas.