LS and accidity/alkaline

For now only on the outside, rinsing the skin, is what I'm doing.

If you have a well balanced diet, of non processed foods, and your digestive system is functioning normally, then the likelihood of healthy well nourished people needing to supplement their diets with chemical is very low. Before starting to undertake drastic changes to one diet it is advisable to have a well qualified of phd level looking into your whole system. There are so many quacks trying to make money out of desperate people with conditions which are uncomfortable but not necessarily life threatening, I would advise caution, and go on a dietary and nuitrition course to properly understand the working of the body. There are just too many charlatans Out There

do take care

Buy natural foods and cook from scratch. Do not buy prepared meals, buy organic if possible or grow your own, too many people have damaged their physical and mental health by going down paths suggested by well meaning people with no qualifications

everything in moderation

hi hanny

am not having any luck with getting through but hopefully can avoid trigger words or book quotations in this reply....which is just to suggest lemon instead of vinegar as vinegar and cyder though they do produce the pH effect you're looking for....unfortuneately promote candidiasis.

This is a factor we may so far have overlooked....so i'll put up something about it that i've read recently. 

It has been very quiet in my e-mail box, may not have received all replies.

I have used lemon with salmon to improve digestion.  Have used apple cider vinegar in salads to help with the same.  Do you doubt the good use of apple cider vinegar?  What's your experience with these items?

 

i am also wondering if i had stopped receiving emails....guess there may be a problem with the site....I am still trying to get an appt. with the specialist I need to see....can't get any help from the receptionist in the office tho...I keep saying I think it is an emergency! but it doesn't seem to help.  My dr. just doesn't know enough about this LS, and I don't want her to do surgury on me...but the opening is closing very rapidly and I don't know what to do!   I have read on my own that surgury isn't recommended as the skin will just grow back anyway, so I am very upset and think I am doomed!!!    or maybe I am just in bad shape.  Whatever.  I just need to know if there is anything at all I can do to stop this progression...I use the clobetasol every other day, but am thinking I am going to use it every day from now on...at least on that area...I use emuaid and emuoil all day long...is there anything else at all I can do???

Hi hanny

various of my replies to you were deleted due to refering to book resources and also there is a trigger word on this subject as some nutritional info is not yet mainstream...very frustrating when one goes to considerable effort!

Anyway  in principle I love apple cyder vinegar. and its beneficial to pH ....BUT I do remember from my herbal training days that together with yeast, especially marmite, and sometimes mushrooms and sweetened things that it can mess with and help to promote can did a ....IF YOU HAVE A PROBLEM with that. I'm coming back to that perspective and have listed the symptoms indicative. I've put them up on alt med if you wanted to review...but its something I've decided to add to my 'working on' list!! Lemon in place of ACV eg in dressings is not such a hardship so i'm going to go for it and see if I can get further improvement. Am doing ok!

Have you tried using a bit of baking soda in your spray bottle after every bathroom visit?  Just three pinches made the fusing somehow melt - my recent experience.  Little bit by little bit.  At first it stopped the vicious LS and now I see diminished fusing.  

Please don't go for cutting, better to go for dilation procedure.  That is stretching of the skin just a wee bit.  This so you can still have normal bathroom visits.  

Try to find a doctor who knows a bit more about LS., if possible.

And you're not doomed, there really is hope.  

May I add - I'm also using coconut oil in my breakfast quinoa.  Mixes well when warm.  This takes care of a lot of things as well.  Ironically I use coconut oil with food and to heal my dilation procedure.  Coconut oil seems to kill the yeast Candida Albicans, I learned.  Was already using it, my doctor's wisdom again,  but just recently learned the benefits.  Also good to fight other infections.  

Yes agreed hanny

just one little thought...may i ask how long a period of time you've been using coconut oil...PV (that's per vagina)...or actualy to be even more correct per vulva...but we don't abbreviate that one for distinction....?

Can't remember how long I have been using coconut oil.  First I started using it with food, a couple of years ago for sure.  More recently in the V area.  For a long time it was a toss up between Emu oil and Coconut oil.  In the end the Coconut oil won, because it has so many additional advantages that were even more useful after the dilation procedure.  

makes sense! very good with food.   and especially now in your current condition for wound healing...brilliant!

i ask just as have this vague idea about reserving coconut oil for occasions when its needed (such as this).... on the basis that when we need an armoury ....we can step up to coconut oil for its anti bacterial, anti viral and anti inflammatory properties.....using plain extra virgin olive oil on a daily basis for moisturising (stored in an attractive wide-mouthed jar with screw lid in the fridge..where it will go a lovely bright green colour)  ....!

The other thing I have heard about as being very restorative is manuka honey. I know that gets mentioned a lot but there may be something in it. Perhaps at night?

The list of options could go on .....to include perrins blend which is highly anti-oxidative and can even dissolve squamous cell carcinoma.

But for ease of compliance just having one thing may work on the basis of success through consistency.

Just musing above ...but of course this condition arises as a result of internal imbalance so I really agree with your supplement strategy....to address deficiencies.

lots of love marey xxxxxxxxxxx

how are you now? loved the cushion story...that is really good self-care.

how was the event? did you enjoy? it must be so great for you to be out and about....that in itself is sure to be a boost for you xx

Hi Marey,

I have been reading all the messages and often lie awake at night thinking of Henny and Patricia.  My question to you is what exactly do you do with manuka honey.  I believe it has certain restorative powers and eat a teaspoonful here and there, when I remember!   Are you saying that it should be spread on like coconut oil?  Wouldn't that be incredibly sticky???  Thinking of you all, all the time!

Wendy

Manuka Honey is on my list.  Just in case the 'tide turns'.  CMO worked for a while and then stopped working.  No idea why.  Big flare up came and the rest is already history.  I realize that LS is LS,  it changes its moods.  Best to 'keep all hands on deck'.  Or rather, collect all possible helps.  For now I will explore the baking soda thing further.  

I find leaving the home the hardest.  Especially because you're always met with food.  I left the event before the food was served, to eat at home.  Yesterday we were invited to friends, but again, I had to be careful, so did barely eat anything from the snacks.  Especially because 'easy food' (mass produced by Costco) was served.  Leaving early enough so I could eat some more at home.  It's not easy for the host either.  I find myself always asking: "What's in it?"

oh absolutely hanny....!! right with you about the wanting to know 'what's in it' ...and more particularly... is it actually food!!!!!! ??

yes a rotating amoury is a good plan. specifically candidiasis is a right little bugger... three different types of medical attack are needed to be effective...but not involving anti-biotics...no way am i going back there!!

such good news about the baking soda with you....that's great. also having manuka in the wings... but have you seen the latest prices of the super pure stuff? phew make sure you're sitting down before you enquire !!  talking of which how is the sitting ability going for you now?

hi wendy

how lovely to interact with you...i think of everyone too.

well manuka is a wonderful anti inflammatory agent, anti microbial and alterative.

like you i can only imagine its application !  i bought a jar and its on stand by....but as with perrins blend i would go for applying a good swipe onto the vulva last thing ...keep a wet flannel, a mirror and a good light to hand.... put on some old knickers perhaps with a sanitary towel in place and stay tucked up in bed....feeling - doubtless -  very sticky but well loved !!

how's that for an improvised answer?!

love marey x

Almost good with sitting.  My special cushion is of great help and meanwhile I also have acquired the ability to judge whether a particular chair will let me sit in comfort or not.  Practise makes perfect, doesn't it.

absolutely!!

love it...you are the girl hanny...absolutely right up on

Hi Marey,

i think on second thoughts I'll keep the manuka honey in reserve!  Love your answer and in fact all your useful comments on this forum.  We are lucky to have you with us.

love Wendy xxx

oh wendy...how kind !!

well i am deeply touched. Like you i notice others and try to appreciate them. we have some amazing people on here. i would like to celebrate joy and suzanne as contributors of a lot of information and suggestions.

how are you? looking forward to following your progress too xxx

also sue...dbagal has shared very kindly and hanny often has some great tips from her experimentations.

well everyone is really great.

i'm a newby by comparison and my aspiration is to reverse this condition. I find  the stories from others who've had LS a long time also very helpful...as the pitfalls are revealed by their kindness in sharing.

it is a long haul to recovery or even to improvement...if a more limited objective is sought.... but i want to bring others with me.

let me quote from a book

"I'm not a teacher, only a fellow traveler of whom you asked the way. I pointed ahead - ahead of myself as well as you".

George Bernard Shaw

Thanks Marey!  I appreciate everyone's input too, even if we don't always agree on the best plan of action. At least we understand each other so well as we have all had similar experiences.  I felt so down when I was first diagnosed and read posts from others going through now what I went through then.  It seemed like the end of the world at the time but it set me a big challenge and it is so gratifying to be so much better now.  Hopefully this alone will inspire others not to give up and not to let it control everything.  There are a lot of people who care you can talk to here if you find it hard to talk to anyone at home.

Sue x

welcome sue,

i'm going to go back to trying L Glutamine....my leaky brain is really getting to me. Been talking to kellie. she is so helpful and inspiring.

been a bit down today. My thyroid is my real issue.

forcing myself to go out now...just can't get going in the mornings!! But i'm missing the daylight hours. not good.

Hi Marey,

I so recognize your thyroid struggle.  Not after my adrenals were checked out did a balance return.  What kind of thyroid meds are you on?

I think that with most illnesses we have to look at some kind of balance somewhere in our system.  With an imbalance we get sick.  This has been my experience this far.  

Hi Marey

L-Glutamine is a good intestinal healer and good for the brain.  It is also used to reduce alcohol cravings.  Although not documented, I think it also helps reduce sugar cravings which has to be a good thing for LS.  My notes say that it is for short term only - take for about 3 months.  I think that is because the amino acids can become unbalanced if any one is taken for too long.  It is also good for memory enhancement - I may add it to the supplements I am taking as I am definitely in need of something for that!

Hope you have a better day tomorrow - one day at a time!

Sue

thanks hanny.

your kind words were much appreciated. I'm very glad you were able to sort your thyroid..that was a major achievement.

i've just got a book  Adrenal fatigue ....to add to Hope for Hashimotos....but i think the sealing with glutamine may help reduce my inflammation. will let you know. yes i do have imbalance at the mo.

i'm on 25mcg of levothyroxin.

sounds generally all good!

i looked into it a while back, ordered some but didn't have the courage to try it. have heard more good things and of its success in IBS ...SO given all healing starts in the bowel (hippocrates?)....am going to resume my trial. i started it and took for two days...but faded out.

re-committing to it. its very sweet as has feed stuff for the probiotics  to be taken as well. so will make my yoghurt extra sour and will put it in that.

strangely having a lot of sweet but unsweetened things...my new morning smoothie has has stevia in it...its a vegan shake with a complete amino acid profile and its delicious!! vanilla and like ice creaM!!

SO GLAD YOU'RE GOING TO JOIN ME with the L Glut....leTS WHACK THIS THING  XXX

yes one day at a time...good advice. thank you

Just to compare notes - After decades of struggle, I'm on desiccated which has the benefit of T3 as well as T4.  Seems to make a difference for me.  

Hi Marey.  Well done!!! You are amazing with the efforts you are going to.  Is the feed stuff for the probiotics Fructo-oligosaccharides (FOS)?  If so, it is very good at softening things up but you really have to ensure that you drink loads of water too throughout the day because it absorbs water to work.  It is a pre-biotic.  It sounds like you have your plan well under control!  Your smoothie sounds delicious! 

 

Thanks sue....!

I really need this encouragement. Yes its FOS. Can send you company details by pm if you wish?

Hey thats great just what I need to hear...have  huge glass of water...freshly filtered by my big blue whole house system to.... alledgedly... remove chlorine, fluoride and heavy meatals (at the mo it tastes more like they've been dumped IN my water rather than OUT...but maybe its just than I can now actually taste the good minerals. Any clues yourself on this matter of water filtering - further to the need to remove halogens...have to say it tastes a bit funny...may continue by double filtering thro charcoal as before. Do you think that's warranted?

Really appreciate this sensible dialogue. OOh got to tell you something...back later x

Hi Marey.  I also have a filtering system on my tap and I assume it is working - hard to tell!  Mine doesn't taste funny though.  If you have only just installed it then perhaps it needs a few runs through?   If you are really concerned, you can buy a water distiller.  The water from the distiller is very pure but free of all the good chemicals as well as bad - not a problem if you get the good stuff from food or supplements anyway.  It is a bit of a chore distilling the water all the time as it takes a long time to do but can be useful if you are worried about the quality of your tap water. 

Glad to hear you are taking FOS - great for regulation things.

I have just read your post about your medical training.  At one time I would have gone with everything the doctor told me but I now try to find a natural solution to my health problems if I can.  I prefer to get at the cause and fix the problem rather than to suppress the symptoms - hence the nutrition training.  I personally believe that this is what a lot of medication does and it can also cause other problems from side effects too.  It is wonderful to hear that doctors are becoming more receptive to natural solutions.  I know that some are very arrogant and blinkered in their approach but others are far more open to alternatives.  I was so lucky to see a specialist for my LS who understood my concerns about steroids and was happy to check on me even though I didn't follow her advice.  She was actually really interested in CMO cream and genuinely pleased with the results for me.  I know that conventional medicine will always have its place and is useful in many circumstances but I don't see why it can't run hand in hand with alternative ideas.  If more people paid more attention to the cause, there would be less demand for conventional help.  I am sure that has stirred up a hornets nest!

Sue

I see it happening, slowly but surely.  We need to learn from all angles.  My specialist could see the difference and went along with what worked better for me.  Small step perhaps, but it is one.  No one knows all.  Together we may come much closer to true healing.  

As long is we do all in mutual respect.   

To  a certain extent, the hands of doctors are tied, certainly in England.  They cannot officially approve or prescribe anything that is not licenced which rules out a lot.  Some are actually referring patients to chiropractors for bad backs and prescribing nutritional supplements though.  Although nutritional supplements can really help, it does concern me that such cheap supplements are often prescribed without the other nutrients that are needed to make them work - calcium in particular but also iron is a common one.  At least it shows that they are aware of the importance of diet and hopefully things will improve in the future. 

On this forum, most people are open to suggestions from others and willing to research what they can to help themselves.  I congratulate the moderators of the forum for providing such a needed resource!

Perhaps it is to our advantage that no definate cure has been found for LS.  Then the road is wide open.  Doctors therefore will be less restricted, because no rules can be set where no solution has been found yet.  

Perhaps what we are doing here on this forum can be called 'grassroots'  because we're not bound to anything and actually free to learn through trial and error.  No one knows the answers as yet.  With such open mind I think that one day we will think ourselves into some answers.  And consequently this will influence the medical world, I'm sure.   And we will realize that we need each other, patient and doctor, scientist and patient.   

Wow what an inspiring response Hanny!

Am loving these exchanges. I would very much like to follow up your kind interest in my thyroid problems....but to avoid going off topic I may post a new thread. Am thinking I might put it in the newly created 'autoimmune section'. What do you think? Would you and sue be willing to go over there? General info for everyone...there s an autoimmunity infomational coming up...so its very specific for us. Just google the word auto immunity  and register for the event. then you get notifications. its free for the first run so be sure to register. x Exciting !!

I entirely agree with everything you've said Sue ...and am lucky too that I get a free hand.

Re: Filtration: I might try having my, now filtered, mains water tested somehow. Would really like to know this pricey system is operational ..or my money back !!!!!!!

Thanks for the reverse osmosis suggestion. I 'm not keen because the water is overly alkalised and this puts a strain on the body...the stomach in particular...and with autoimmunity one of the features is low stomach acid that we all have. This is relevant to your heading hanny so am adding this information in here.

Am just going to look up your kind iodine-free multi vits recommendation Sue... and will try having a go with working more on my thyroid. Are you well in the thyroid dept? Do you have an opinion on the best strategy for addressing hashimotos? Well I don't want to take hanny's thread too far off-topic so thought I'd move the thyroid element that I'm raising over to our newly created autoimmune section and hope I may get some responses. This was Morrells suggestion for a new category. I came up with Alt med. Have you visited Alt med yet? Think you'd like it. We've got some great folks over there. We all love Joy. Do have a look.

Anyw ay there is so much more to be said on this topic so still coming in here . Think its one of the best threads going at the mo....So optimisitic and thoughtful.

Excited to be getting back to you... to say.... that.... I made contact with BANT ....AND I found someone local in my area. !!!!!!!!!

Was really excited about that.

Unfortuneately however she's not going to be continuing with her practice. I was so disappointed. BUT We had a really great chat. She knew of someone with LS...who's managing her condition so I was heartened to know that there's knowledge of LS out there. One thing we both agreed on was that I would prob benefit from an alternative rather than a complimentary practioner ...and I agree. I have been trying to locate a naturopath...and I will continue to try to do that.

This got me thinking that the category of alt med prob needs to be separated from compli med as there is a distinction. Infact it is a very important one. I think I'll raise this with Alan (the Emis Moderator). But ofcourse anyone can go anywhere on this site and can receive notifications, or 'unfollow' as they wish...so people are concentrating their energies on where they most want, and need, to be at any time BUT CAN ALSO CHANGE THEIR EMPHASIS over time as we gain more confidence etc. I personally feel that I would benefit from some very specific nutrient and supplement advice at the mo. I mentioned this to my GP ..and you'll never guess what but the practice now has such a practioner. Don't know if they're Bant reg'd but I'll enquire and let you know as to their orientation.

Life is so exciting and good at the mo xxxxxxxxxxxxxx

But Marey, this forum is free.  ???

Is that the autoimmune summit ? from the 10th-17th ? It has about 20 specialists to help reverse all autoimmune diseases !! And it's free I was just going to message you about this.

 

Free, I like that.  By e-mail or ...???  Could you message me too?

thats the one !

ah glad you're finally taking an interest hanny...been trying to get you to watch these for ages. then we can have a great discussion and you'll get what we've been on about!! hopefully right up your street and you'll enjoy x

Yes it's free will inbox you you receive an email everyday and you get 24 hours to watch it

theres not only that...AND the digestion sessions .... but also at 5pm pacific...anyone able to translate that to uk GMT ?...THERE'S ALKALISING THE DIET ...Relevant to this thread x

roscalie