If LS is not a virus than what is in anti-biotics that can stop a flare-up?

I'm fairly realistic, I think. LS is LS. When you have difficulties walking you get a cane, or other.  When difficulties peeing you get dilation.  But it will never cure LS of course.  They are 'crutches.'  

At the same time another biopsy will be done.  According to the specialist - to make sure to know that nothing else is going on.  

I'm getting a break from LS due to the anti-biotics.  Pleasant for now. For the rest it will be a waiting game.     

So interesting that the LS is remitting with the antibiotics. Do you think that you had an infection, too?  Yes, this LS can keep marching on and present us with ongoing issues.  I also seem to have the LS in my urethra--pretty constant irritation, but the cultures say no infection present.  This irritation started this spring when I had a UTI after not having had one for many years--I think that it got the LS going in my urethra.  I hoping that your treatment gives you good relief.  

Apparently in the Netherlands people are given anti-biotics with a flare-up. (someone from there wrote me)  It must be known then by some in the medical world that this does help as a last result measure perhaps.  The anti-biotic was given to me because the doctor didn't wish to wait for test results of the urine.  I forgot to ask wether it was really an infection.  We didn't have the mindset to go over other tests either.  Not being able to urinate properly became our main focus and resulted in a quick visit with the specialist and so further.  But it will be interesting to know for us here to see what was first - infection and then ant-biotic doing its work, or no true infection and anti-biotic doing LS work directly.   

This idea will be something to watch in what others report here.

It is certainly starting to seem as though antibiotics affect LS, but there can't be anything good about being on them for a long time, not for the imune system. My mother's been on antibiotics a million times over twenty years for intersticial cystitis, but she's never been offered the option of being on a permanent low dose.

What I hope is that somehow an answer can come from what one perhaps can call accidental discoveries.  Many scientific results have some of that in common. Perhaps an item out of that anti-biotic medicin could be useful to turn things around for people with LS.  Unfortunately I'm not a scientist, or I would want to analize  this further.

What Jenny is saying is interesting as well - why do I have urine infections all the time?  Does this perhaps come as a result of the prescriptions I use?  All of us meanwhile know that what we have to 'combat' LS with is not necessarily the answer.      

A lot of the current research on autoimmune disorders is focusing on gut disbiosis as an epigenetic switch to turn on our autoimmune genes. Since antibiotics can affect the microbiome, it's possible that there is some connection here.

Oh, now that's interesting. Antibiotics mess up the immune response and LS is about a specific over-active immune response. So, maybe when antibiotics are turning off the whole immune system, it manifests as what seems like a good thing in slowing down LS. Is that what you mean?

Interesting light you shed on the ani-biotics Suzanne.  That's what I understand as well Suzanne and Morell - turning off perhaps partially the immune system to prevent the system from turning onto itself.  There are several medications already in use.  One gentler version is used by the Naturepath community and was suggested to me a while ago.  (I'll look up the name of it later.)  But I already have a weak immune system.  So what to think of that? That was the reason I spent so much time in my bed prior to Adrenal gland treatment.  No bug would pass me by unnoticed. So I didn't dare going for it.  

The other question for me is:  Is LS indeed an autoimmune problem?  

Research is finding that there are specific comensual bacteria which help regulate appropriate responses our immune systems (most of which is located in the gut because the gut presents us with most of our exposure to pathogens).  There are various ways that our bacterial balance can be less than ideal to maintain health and proper immune responses (there are over a thousand different species that exist in us).  Lack of breast feeding or not being born vaginally, not getting great bacteria from our moms or from natural soils/animal exposures, too many antibiotics, poor diet, etc. all contribute to a worse microbiome.  So, I don't know if LS could be affected by antibiotics in a positive direction, too (though more likely antibiotics would be a negative effect).  I was just wondering based on Hanny's experience if there could be an overgrowth of unhelpful bacteria (disbiosis) that could create LS at times, and if antibiotics could possibly wipe out those bad guys and cause the LS to go into remission.  Just playing with ideas here.  

Hi Hanny--I think that I've heard of that gentler antibiotic--it just stays in the gut and is not systemic, right?  Are you doing better with bugs these days?  

This just tells me that when we toss these terms around – overative immune system, weak immune system – our understanding is merely conceptual. It sounds contradictory, impossible to happen in the same body. I score 100% on Suzanne's list of causes of a poor microbiome, but I still have LS. The one thing not on it is stress, which I had HUGE for a couple of decades in mid-life. That did some damage. But I had LS before that. This is the kind of thinking that makes me sit back and not get too excited about all the hot ideas out there. Science is working on the immune system. (And climate change and pandemics etc...) I just knit.

Good thinking Suzanne.  Just got a bit of an ear infection today.  Lowered immune system?  I don't have much to work with so the immune system is soon affected. To look into a certain kind of bacterial 'overdosis' ?  There's a thought.  But how does one get in such a state -disbiosis?

Talking about gut - I also take Colostrum.  I may have to increase the dosis for a while to have the intestines recover from the anti-biotics.  You win temperary on one end and you loose on the other. 

Without the anti-biotics and with taking care of the adrenal glands, I won't soon have an ear-infection. (look at other comment a few minutes ago)  The other medication I mentioned is called Naltrexone. It is called an opoid blocker. It's said that it may have a beneficial effect on the immune system.  I didn't go for it.  "May have" is not good enough in my opinion.   

I dont' think it possible for the body to have both an overactive immune system and a weakened immune system.  There is however a theory by a Dr. Bihari who says that the immune system is weak in autoimmune disorders.  That corresponds with my situation.  But dr's do not agree - others state that there is an imbalance.  How then can I as ordinary soul, untrained in the medical field make anything out of this.  There are so many different opinions among those who do have the medical training.  

Oh, low-dose Naltrexone.  I've been prescribed that a couple of times and even picked it up from the compounding pharmacy each time but never took it either. Yes, that's supposed to help improve endorphin production which can be low with autoimmune issues and sometimes seems to put these disorders in remission, they say.  With a history of allergic reactions to medications, I just always get nervous about new ones.  I seem to do better with less meds.  

I agree, Hanny, that anything that we can do to improve our gut health after antibiotics is probably for the better--fermented foods, probiotics, lots of veggies, etc.  I've heard good things about colostrum.  I can't eat dairy so I haven't tried it.  Is it helpful for you?  Vitamin D can really help our immune system too, and our resistence will be lower if we're deficient--have you had yours tested? I have been so much healthier and not caught colds or flu since getting my vitamin D level up, and it's supposed to help with our immune systems and autoimmune disorders too, so may be helpful with LS. I hope that your ear infection clears up soon!  You don't need another thing to be dealing with right now!    

My understanding broadly is that there are too many of one kind of immune cell and not enough of another kind in autoimmune disorders (a dysregulation).  I don't remember which is which right now (B cells, T cells, and all of their variations).  I read some really interesting information on this recently.  There are bacteria in our gut that moderate our immune response, and if they're missing we seem to overreact.  I've also heard speculation that a leaky gut (permeable bowel) may allow larger food molecules and other substances to escape into the bloodstream and that the body attacks these because they don't belong outside of the gut--and in doing so engages in "molecular mimicry" and goes after parts of our bodies that have similar protein arrangements (like the thyroid or parts of our cells).  I wish that I could remember more of the immune system info that I read, but it sure gets complex quickly and is hard for me to retain the details.

I have to be careful with anything 'foreign' as well.  Hence my not taking this Naltrexone.  Plus then that it wasn't a sure thing.  

I have been taking extra vitamine D as well.  The colustrum has helped a great deal with my intestines and the functioning of it.  Doing much better.  After years of Sythroid and the like everything was thrown out in a hurry.  The colustrum has turned that around.  However, now with the use of the anti-biotics (session completed since the day before yesterday)  I have to work on 'restoration.'  I nibbed the ear infection in the butt, so to speak. Nothing this morning.  

With all this I haven't had a flue in years. (knock wood)(ha)

You know, we're not scientists, at least I'm not.  Just patients with a nasty incurable disease. Trying to understand so hard.  We want to be cured so badly.  Like all people with illnesses for which there is no good answer.  There are unfortunately only 'crutches' to make it somewhat liveable. So 'crutches' it is.   

Suzanne, it's realistic of you to mention leaky gut along with the word 'speculation'. I got hold of John Pagano's book on curing psoriasis around 2002. His main thing was leaky gut. He's a chiropractor who's made a name for himself publishing photos and case histories of his patients before & after. Around that time I worked with someone who'd just got a book on IBS and had improved his digestion a lot. There again the main theory was leaky gut. So I went along for many years accepting this as a scientific fact. Now I read in various places – microbiologists explaining that there are all sorts of complicated things going on which are as yet only sketched out in science. (The mechanics of the cell holds endless fascination for me and I catch up on the frontier every few years.) I was unable to fully implement Pagano's diet (too many difficult exclusions when I was already eating healthy vegetarian and low sugar and no alcohol). Since then have had terrible flares and long remissions for no reason I could pinpoint except stress. He is pictured with Tibetan Buddhist monks on the back of his book and recommends meditation, or what he calls 'right thinking'. Plus, not surprisingly, spine stuff.

If you can point me to up-to-date science on leaky gut, Suzanne, I'm interested. By PM, I guess.

I've read some articles recently which indicate that leaky gut, or permeable bowel, is no longer considered just a theory.  But as you indicate, it's A LOT more complex then some people picture it.  I said that it was speculation in my post because we may be guessing about some aspects of the process.  It's known that a substance called zonulin is a part of the gatekeeping function that regulates what we allow into our bloodstream and brain (it is twenty times higher in celiac, for example). Autoimmune disorders are being found to be related to the microbiome and permeable bowel, but in complex ways.  When I run across another good article on this topic, I'll forward it on in a pm.  

Hanny, how are you doing?  --Suzanne

Hi Suzanne, how nice of you to ask.  The answer is:  Hanging in the best I can.  Jokingly I call my bathroom my second living room.  However, this morning I received a call from the hospital.  This dilation procedure will happen on Oct. 6th.  Not too long from now.  Further instructions towards the end of this week.  

Was good to read Michaela's experiences - a nice break from LS due to anti-biotics.  But I can also feel that it won't be forever, too bad.  

You're doing alright Suzanne?  

Hi Hanny,

October 6.  Under two weeks away.  You must be looking forward to the relief of getting better and a bit uneasy as you move toward it.  Such a sensitive and important part of the body that needs to work right.  I can't imagine the challenges that you've had these last few weeks as you've felt the constriction that you've had in your urethra.  

Thanks for asking about me, too. Just saw the gyn yesterday after my first six weeks on the clob (two weeks were on the cream and the last four have been on the ointment).  When I last saw her six weeks ago she noted that there were no apparent changes in archetecture, but only the white patches and red areas that let her make the LS diagnosis.  This time she said that the changes I now have physically will be permanent (losing labia minora), but the skin will improve and the white spots will fade but never fully disappear.  Hmmmm...all of these changes apparently happened while I was on the clob and just in the last six weeks. My clitoris is also sore and retreating, and my urethra is usually sore, too.  I need to go back to the drawing board and figure out how to get this into remission.  I do think that the clob is starting to help some now, but we'll see.  I have put several other autoimmune disorders that I've been diagnosed with into remission, and so I'm hopeful that I can slow this down, too.  I may have been getting too much sugar through the watermelons that I love to eat daily, so I've just decided to make sure that I am lower glycemic to not add to the inflammation in my body. Also need to work on my sleep schedule and stress levels, I think.

I am very hopeful that the dilation procedure will provide you with much needed relief.  Please keep us posted as you move toward that procedure and following it!  We will be thinking of you.

All my best,

Suzanne

Hi Hanny, I hadn't seen you here for a bit, so I wondered last night whether you'd already had the procedure. I'm glad you have a date thet's quite close. Thinking of you as my pioneer of possible latter-years experience and really looking to an excellent outcome.

Suzanne, I think you might have hit on something with the watermelon. I had a minor flare-up during our big melon-gobbling week. I remember the TCM dr. who told me to get off sugar – including the piles of fruit I used to eat. I could live on pears and bananas, but I'm very stingy with fruit these days. In fact, I hate to say it, but we grew 11 amazing canteloupes last summer and it was in the midst of that when my cyst happened. Boy there are some things in life where we do wish we could turn the clock back. I may re-think growing them next year. This year they were rained out.

The clob takes a long time. I've only achieved something like remission now that I've been on it just over one year. I can easily see that it plods along at a certain pace, unable to keep up with a major flare-up. Unfortunately, these days the main thing I credit with the lack of major flares this year is celibacy.

Morrell,I think that you are right about the fruit. Darn!  On some level I knew that I was cheating because the watermelon just was so addicting!  I will stick with the clob, but disappointed that there were no miracles. We do need to take a multifaceted approach here because just the clob may not do it. Would be interesting to query people to see what they think makes their LS worse (have we had a thread like that before?). Regarding sex, I think that I forced things too before I suspected that sex or dilation during a flare might make the LS worse.  That is advice that doctors may not know.  I was even using (forcing) dilation, and now I think that was making it worse, via the Koebner phenomenon that you mentioned.  

Hate to be the bearer of bad tidings, Suzanne, but now that you tell me all this (there's no such thing as TMI here), Koebner it is. This confirms my theory once again that sex is a major irritant during a flare. And what we call a 'flare' sounds short-term, but both flares and remissions can last years. I really don't agree with the medical advice that having sex keeps our introitus from shrinking – that may be true for simple hypoestrogenism-caused atrophy but not for LS, which is ever so irritable!

Excellent suggestion Suzanne, let's start a discussion on "What makes LS worse."  I'm still at a loss, cause I was so diligent with everything.  A huge flare-up was my reward.  Unstoppable only by anti-biotics, though temporary. Somewhere I may have missed something. What did I not notice?  Inspecting down below didn't show a thing.  The only thing I can still think of is that it was very warm weather.   

Thanks Morrell.  I feel a pioneer indeed.  I'll take it how it comes and will make the best of it.  I'm spending too much time in the bathroom at present and don't get all things done in a day. If you see me not around every day, that's why.  

I agree, Hanny.  It is so mysterious at times.  We can feel like we're doing everything right and then be flared.  I still think that it's a combination of genetics and environmental triggers turning on the genes, but what are the environmental triggers?  Stress, foods, sugar or high insulin levels, yeast overgrowth, poor diversity in our gut microbiome, breakdown in the skin barrier, trauma to the tissues....or what???  All of us would like to know so that we can get some control over this!  

I agree Morrell and when I figured this out about a month or two ago (with your comments about the Koebner phenomenon) I stopped forcing anything. Along with you, I now don't think that it is good to force dilation except with menopause and low estrogen symptoms, not LS.  Our skin is not elastic when flared, and it can tear and have a terrible time healing, as well as traumatize the inflammed tissues.  My rule of thumb now is no uncomfortable penetration!  

Suzanne, there is something about the glob that I can not put my finger on.  In one way it helps, in another way it seems to do something that feels as if things worsen.  I'm glad to read that there were minor architectural changes at least.  

Where did I read that to thwart off inflammation: eat generous amounts of fruits and vegies.  Are we talking about inflammation with a flare-up, or are we talking about something else, or a complexity of things?  

Eat healthy fats, drink red wine in moderation (I won't drink any alcohol)  Eat fish on a regular basis, consume very little red meat.   Does this ring a bell somehow for you?  

I'll try to keep posting my thoughts and findings, but have to get things done as well.  Not only do I spent too much time in the bathroom at present, I also need to harvest and get other work around the house;done. This in case the procedure that I'm about to undergo sets me back for a while.  Practical things merely. 

Hi Hanny,

Yes, my understanding is that veggies and also to a lesser degree fruits are supposed to do many things to help us stay healthy. I've tried recently to really step it up in the veggie department. (I had some other thoughts to you about all of this that for some reason went to moderation.)  Red meat seems to be getting support in the paleo community as long as it is pasture-raised (commercial feedlots with grain-fed and antibiotic-fed animals produce a less healthy profile of nutrients, to say nothing of their not being treated with kindness).  The rest of your list to thwart inflammation makes sense to me.  

So sorry about all of the time spent in the bathroom.  You must have a lot to do to get ready for the procedure, even as you're not feeling well.  Will understand if you can't keep up on these posts, but do let us know how you are doing from time to time, please.  

All my best,

Suzanne