I was diagnosed with LS 8 years ago. I struggled with the steroid ointments and the pain. At the same time I was experimenting with diet control for my type 2 diabetes. A doctor mentioned to me that type 2 diabetes is an autoimmune disease and I knew I could get my diabetes into remission with diet. Later my gynaecologist mentioned LS was an autoimmune disease. Suddenly the pieces fell into place and I immediately changed my diet. The LS immediately went into remission, I stopped the ointment and I’ve never had a flare up since. A ketogenic diet saved me and now the carnivore diet is still saving me and improving every aspect of my life.
Hi, Linda, happy to hear that you found what works for you. Many folks find that diet helps their LS, I'm one of the few that isn't impacted by diet, which is good, because I love my food. We have a great piece on diet here www.lssupportnetwork.org/lsdiet
Yes, carnivore diet is exactly what it sounds like. Some with AI conditions find relief from symptoms when they eat this way. We have a piece on diet written by a nutrition therapist on our website here: www.lssupportnetwork.org/lsdiet
This information is so valuable. My provider said I should feel improvement in 1-2 weeks. I wish when providers aren’t sure of what to do they would just refer their patients to a specialist instead of giving us wrong information
Hi Jaclyn, I was diagnosed with LS three months ago. This is all new to me and came across your videos which, I really appreciate you for sharing these. They contain so much important information. I am on 2x per week treatment for life. I was not given full details of how to apply, only to apply 2x weekly and that was it! I was first prescribed the foam clobetasol when seen at the ER and that was awful it burned all time when applied. My GYn changed it to the ointment and this is, so much better. My itching and burning is under control there us some light white skin and hoping this goes away after prolong use of treatment. since, I just started only three months ago. Thank you and bless you for sharing with others 🙏 ❤
I’ve tried some newest treatment options. At first, I tried HIFU therapy with PRP and was very disappointed. After 6 month I tried erbium laser, also combined with PRP. It really made a difference, and the look of my skin improved, itching disappeared for some time. All of these procedures were very expensive and painful, however they do not guarantee a long term effect. So I will definitely try the golden standard. Thank you for your videos.
Hey, Kata! Thank you so much for watching and taking the time to comment. Super appreciate your feedback, sometimes I worry I'm too chatty, but those little details are very important, and, like you mention, can make a big impact on one's healing journey. With love, Jaclyn
Hi Jaquiline, I was in terrible pain, burning and out of my mind itch - when I finally got diagnosed. I had been told over and over again that I had a yeast infection - or in the case of my GP - I was told that the vulvar area was not her area and I had to see someone else. It took me four months to get an appointment with a urogynecologist. Before that I believed all of the medical people who told me it was a yeast infection or "you just have really dry skin down there - use Desitin" Finally after googling and researching - I read about this condition and knew right away that LS was my problem. When I finally saw the urogyn - she diagnosed me right away, and I was finally put on Clob 2x/day for one month. Within the first three days, I slowly started to get some relief from my symptoms. It seemed like I noticed improvement every few days - by the time I hit the 2 wk mark - I felt 85% better. I just want to give others hope - because living with the pain, burning, and itching the LS brings makes you feel so helpless and hopeless - and you literally PRAY hard that the next medical person you see with accurately diagnose and prescribe what you need to start getting relief.
Thank you so much for sharing your story. I know others will read it and feel hope. Your story is so common in the medical gaslighting and symptom dismissal. So many of us are turned away for years being told it's "just yeast" - so maddening. I'm so proud of you for advocating for yourself and so thrilled to hear you are now doing so much better. With love, Jaclyn (ps. all my new 2023 videos are on LSSN's TH-cam channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork - I will occasionally still post here too, but the bulk of my 2023 vids will be on LSSNs channel
Awesome info. Thank u! Sorry for length of my text. I’m 66…10 - 15 years ago I had a biopsy for LS. Negative. Tried many things/meds with some random remission over the years. Incidentally I also had Levator Ani Syndrome around that same time and went to a pelvic floor therapist for months as she treated me. I did not put the 2 together. Fast forward to Jan 2023. I have several different body parts that currently painful. Rotator cuff on both shoulder fully torn & partially torn. IBS. Uncontrolled asthma and more. Talk about stress! Seeing Dr’s for all body parts. My full time job is self care and its exhausting. In Jan 2023 I began to itch like I was sitting on a red ant hill. In Feb after seeing several Dr’s at walk-in, one said to me “have you been checked for LS?” I shared my negative biopsy years back. So my family Dr. Checked me & did another biopsy. Again negative but said I likely had LS due to fusions, white spots, itch, redness. Been on Clobetasol.2% regime now for one month, supposed to switch to every other day for a month then twice a week forever (unless it flares). Seeing this video I realize that it might take up to a year for relief. Was it your experience that you switch from every night ointment to every other night even if symptoms not that relieved yet (after one month). After one month I am from 10 out of 10 to 8 of 10. I’m scared to go to every other night but perhaps I should go into 2nd phase of every other day anyway??? Also I probably used too much ointment (they say pea size) and last weekend flared to raw pure red inflamed down to inner thigh. So I’m using less. Some relief then. As I got a wee bit of vag itch relief I realized that I needed to return for more pelvic floor treatments. Now gone twice. Pelvic floor gal said there is no doubt I have LS. I have yet to find a LS specialist although my family dr is checking in with gyno & dermatologist in a city 2 hours away. As to stress … my body is falling apart in many other places and truly finding it difficult to lower stress. I plan to watch more of your videos & like the LS support Network too. ❤
Wow, what a tough journey you've been on. So sorry to hear how challenging it was to get a diagnosis; you definitely aren't alone in this. Biopsy accuracy depends on a number of factors including 1) the doctor needs to know the right place to biopsy from, 2) the doctor needs to give proper notes for pathology, 3) they need to use a dermatopathologist (someone who works and has knowledge of vulvar dermatoses, etc.). So that could explain what happened. Stepping down is hard and something that should be discussed with your doctor. Some folks need to stay on daily for more than a month, and some folks go straight to maintenance. In some countries doctors put patients on 3 months of daily and then tapper them down. Have this discussion with your doctor. With stress, yes, that's a massive piece. I have a webinar for purchase (on sale) on my website on stress, LS, and vagus nerve - more info here: www.lostlabia.com/product/the-vagus-nerve-and-lichen-sclerosus-workshop/ - also consider coming to our FREE support meetups - www.lssupportnetwork.org/connect and finally, if you are looking for individualized support, I do offer 1:1 calls which you can learn more about here www.lostlabia.com/supportcall Thank you so much for watching and taking the time to comment. I appreciate you. With so much love, Jaclyn
I've been watching A LOT of interviews with LS/vulva specialists - many Doctors seem to put patients (to start) on 2x per day for the first month. My Dr. did and i'm so thankful. My symptoms were horrible. 10 out of 10 pain. 10 out of 10 itch - I couldn't sleep, all I did was try to survive. But after 2 weeks of 2x/day I would say my pain has diminished to maybe 40% and the same with itch. I can't even think about how thankful I am without crying. I am so sorry that it sounds like the Drs you have been to see really let you down. Thinking about Drs and how they do not educate themselves on a condition that is so horrendous and has the potential to not only put us into a painful hell as well as destroy our feminine anatomy -makes me very angry. If they SEE the signs, even though a biopsy comes back negative - they NEED to start the patient on steroids and continue to monitor the patient - OR refer them to someone who is more knowledgeable. I hope you feel better soon - you've been through so much - i'm praying you get to remission fast.
@The Lost Labia Chronicles No . Thank you you for taking your time to research this subject and putting into layman terms for people understand all the jargon. Bless you x
I was told to apply 2x a day for 30 days then two times a week forever. I was nearing the end of my 30 and got my period and the pad completely ruined me. Like on fire all over. The doctor told me to do 2x a day till I’m done with this flare. It’s been about a week and I’m still not great but I guess better. So I’m trying one time a day. It actually seems better at one time a day. BUT what did you do for the year it took for you to get in remission? Did you apply every day? Twice a week? And if it’s twice a week did you struggle with horrible symptoms the other days till you were in remission? I was under the impression to use the cream often while o have symptoms. Ugh. They feel like they will never stop!
hi I’m not diagnosed with lichen scelorus but I think I might have it ( incredible itch, burning, pain, my vulva looks pale like it’s sick) I’m seeing my dermatologist next week and I don’t think I’ll be surprised if she tells me that I have LS… but I don’t know why I’m really stressed out about the treatment not working, my main symptom is itch, I would scratch and scratch til im bleeding and I mean I can’t live like that anymore and I’m so scared that the treatment won’t work I had steroids before and it didn’t really help ( tho I don’t think I had the ones you’re talking about or maybe for a few days) anyway… I hope I’ll be ok but this video made me less anxious thank you !
I think I'm allergic to steroids. I had a very bad experience with Dermovate. Now I'm trying Momate and I'm afraid I will have an allergy again. How to understand if there is a reaction and which reaction is normal?
The brand is Private Packs and www.privatepacks.com and if you use my code THELOSTLABIACHRONICLES you'll save 15% off of your order. With love, Jaclyn (ps. all my new 2023 videos are on LSSN's TH-cam channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork - I will occasionally still post here too, but the bulk of my 2023 vids will be on LSSNs channel
Totally OK :) I use epsom salts all the time. The only thing I would say is any salt can be a bit drying, so make sure when you get out of the tub to either apply your steroid (which contains an emollient) or an emollient :)
I am in quebec, Canada, and never was I informed as I am now. I have to lean to be patient, applying more consistent methods(which I am) to hopefully get things into remission, I hope! 🙏
@@smileeveryday421 I was born there! I love that you are empowering yourself with education. Absolutely, you will get into remission - we will manifest it!
I just checked out the LS Network diet information. I hold a masters degree in nutrition from Tufts University. I have reviewed their information and can tell you that it is impossible for anyone to follow. It does not include what to eat. All that is left is mainly meat, fish, and poultry. It looks like a good way to become malnourished fast
Hi, Donna. Super fair. I did not write that piece. And, if you look at the content I create, I actually never talk about diet for a myriad of reasons, including, but not limited to: 1) There are no robust studies linking diet to LS, and no robust evidence supporting the elimination (or even inclusion) of foods or food groups, 2) the way diet and nutrition is often discuss in the context of chronic conditions can be very problematic and triggering for folks with a history of eating disorders and can even lead to folks developing disordered eating, and 3) I can't speak from lived experience because I don't follow any diets.
I absolutely doubt that anyone would enter a state of being malnourished consuming meat, fish and poultry. I disagree with you - especially if they are including eggs and they are not sensitive to eggs. Also, There are many Drs who are also Carnivores - consuming only meat, organ meats, eggs and animal fat - and they are thriving. Perhaps you should listen to some experts on this. I honestly don't care what kind of masters you possess - I've found medical schools are completely dictated to by Big Pharma and Big Food industry - so i'm not surprised at your comment. Meat, in particular beef, is the most nutritionally dense food on the planet. I've been Carnivore for 3 yrs - Reversed type 2 Diabetes, high blood pressure , lost 90 lbs, no signs of the A-Fib I had - my Cardiologist had me wear a monitor for 3 months - I think you need to go back and further research things. Try listening to Dr. Anthony Chaffee, or Dr. Ken Berry, - there are many many Drs. who would totally disagree with you.
I’ve been using steroids for seven months…. Long story short, first health care provider advised just a few weeks with steroid and then go off… and I kept trying to do this, and it worked great while I used the steroid, but when tried to go off it was unbearable…then another provider said to use it until June to get everything under control…NOW… it’s flaring up while using the steroid but it’s still munch bettter than with no steroid
I'm so sorry to hear this. I wonder if you can get a second opinion from a doctor that really knows LS. LSSN has an LS provider directory here: www.lssupport.net/providers - with love, Jaclyn
Thank you so much, i was diagnosed 4 days ago. Have watched many of your videos. You are so calm and soothing and offer hope. ❤
I was diagnosed with LS 8 years ago. I struggled with the steroid ointments and the pain. At the same time I was experimenting with diet control for my type 2 diabetes. A doctor mentioned to me that type 2 diabetes is an autoimmune disease and I knew I could get my diabetes into remission with diet. Later my gynaecologist mentioned LS was an autoimmune disease. Suddenly the pieces fell into place and I immediately changed my diet. The LS immediately went into remission, I stopped the ointment and I’ve never had a flare up since. A ketogenic diet saved me and now the carnivore diet is still saving me and improving every aspect of my life.
Wth you mean with "carnovire" diet? (Respectfully). Like, you never eat veggies? Ever?
Hi, Linda, happy to hear that you found what works for you. Many folks find that diet helps their LS, I'm one of the few that isn't impacted by diet, which is good, because I love my food. We have a great piece on diet here www.lssupportnetwork.org/lsdiet
Yes, carnivore diet is exactly what it sounds like. Some with AI conditions find relief from symptoms when they eat this way. We have a piece on diet written by a nutrition therapist on our website here: www.lssupportnetwork.org/lsdiet
@@thelostlabiachronicles That's very interesting, I'll be checking it out. Thanks!
@@user-wt5if6rx8myes carnivore is a meat only diet. Many veggies are super high in oxalates which can cause harm and can aggravate LS too.
This information is so valuable. My provider said I should feel improvement in 1-2 weeks. I wish when providers aren’t sure of what to do they would just refer their patients to a specialist instead of giving us wrong information
Thank you Jaclyn! Thank was extremely helpful! I'm new to LS and I was looking for that exact information!
Hi Jaclyn,
I was diagnosed with LS three months ago. This is all new to me and came across your videos which, I really appreciate you for sharing these. They contain so much important information. I am on 2x per week treatment for life. I was not given full details of how to apply, only to apply 2x weekly and that was it! I was first prescribed the foam clobetasol when seen at the ER and that was awful it burned all time when applied. My GYn changed it to the ointment and this is, so much better. My itching and burning is under control there us some light white skin and hoping this goes away after prolong use of treatment. since, I just started only three months ago. Thank you and bless you for sharing with others 🙏 ❤
I’ve tried some newest treatment options. At first, I tried HIFU therapy with PRP and was very disappointed. After 6 month I tried erbium laser, also combined with PRP. It really made a difference, and the look of my skin improved, itching disappeared for some time. All of these procedures were very expensive and painful, however they do not guarantee a long term effect. So I will definitely try the golden standard. Thank you for your videos.
I really love how you explain everything so perfectly
Aw, you totally made my day - thank you so much! I super appreciate you watching and taking the time to comment! So much love to you.
Thank you so much for much for your videos, it's great you go into "little" details, these could make a big difference in healing.
Hey, Kata! Thank you so much for watching and taking the time to comment. Super appreciate your feedback, sometimes I worry I'm too chatty, but those little details are very important, and, like you mention, can make a big impact on one's healing journey. With love, Jaclyn
Really agree!❤️
Hi Jaquiline, I was in terrible pain, burning and out of my mind itch - when I finally got diagnosed. I had been told over and over again that I had a yeast infection - or in the case of my GP - I was told that the vulvar area was not her area and I had to see someone else. It took me four months to get an appointment with a urogynecologist. Before that I believed all of the medical people who told me it was a yeast infection or "you just have really dry skin down there - use Desitin" Finally after googling and researching - I read about this condition and knew right away that LS was my problem. When I finally saw the urogyn - she diagnosed me right away, and I was finally put on Clob 2x/day for one month. Within the first three days, I slowly started to get some relief from my symptoms. It seemed like I noticed improvement every few days - by the time I hit the 2 wk mark - I felt 85% better. I just want to give others hope - because living with the pain, burning, and itching the LS brings makes you feel so helpless and hopeless - and you literally PRAY hard that the next medical person you see with accurately diagnose and prescribe what you need to start getting relief.
Thank you so much for sharing your story. I know others will read it and feel hope. Your story is so common in the medical gaslighting and symptom dismissal. So many of us are turned away for years being told it's "just yeast" - so maddening. I'm so proud of you for advocating for yourself and so thrilled to hear you are now doing so much better. With love, Jaclyn (ps. all my new 2023 videos are on LSSN's TH-cam channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork - I will occasionally still post here too, but the bulk of my 2023 vids will be on LSSNs channel
I love this, so calming and compassionate and Informative thank you so very much
Awesome info. Thank u! Sorry for length of my text. I’m 66…10 - 15 years ago I had a biopsy for LS. Negative. Tried many things/meds with some random remission over the years. Incidentally I also had Levator Ani Syndrome around that same time and went to a pelvic floor therapist for months as she treated me. I did not put the 2 together. Fast forward to Jan 2023. I have several different body parts that currently painful. Rotator cuff on both shoulder fully torn & partially torn. IBS. Uncontrolled asthma and more. Talk about stress! Seeing Dr’s for all body parts. My full time job is self care and its exhausting. In Jan 2023 I began to itch like I was sitting on a red ant hill. In Feb after seeing several Dr’s at walk-in, one said to me “have you been checked for LS?” I shared my negative biopsy years back. So my family Dr. Checked me & did another biopsy. Again negative but said I likely had LS due to fusions, white spots, itch, redness. Been on Clobetasol.2% regime now for one month, supposed to switch to every other day for a month then twice a week forever (unless it flares). Seeing this video I realize that it might take up to a year for relief. Was it your experience that you switch from every night ointment to every other night even if symptoms not that relieved yet (after one month). After one month I am from 10 out of 10 to 8 of 10. I’m scared to go to every other night but perhaps I should go into 2nd phase of every other day anyway??? Also I probably used too much ointment (they say pea size) and last weekend flared to raw pure red inflamed down to inner thigh. So I’m using less. Some relief then. As I got a wee bit of vag itch relief I realized that I needed to return for more pelvic floor treatments. Now gone twice. Pelvic floor gal said there is no doubt I have LS. I have yet to find a LS specialist although my family dr is checking in with gyno & dermatologist in a city 2 hours away. As to stress … my body is falling apart in many other places and truly finding it difficult to lower stress. I plan to watch more of your videos & like the LS support Network too. ❤
Wow, what a tough journey you've been on. So sorry to hear how challenging it was to get a diagnosis; you definitely aren't alone in this. Biopsy accuracy depends on a number of factors including 1) the doctor needs to know the right place to biopsy from, 2) the doctor needs to give proper notes for pathology, 3) they need to use a dermatopathologist (someone who works and has knowledge of vulvar dermatoses, etc.). So that could explain what happened. Stepping down is hard and something that should be discussed with your doctor. Some folks need to stay on daily for more than a month, and some folks go straight to maintenance. In some countries doctors put patients on 3 months of daily and then tapper them down. Have this discussion with your doctor. With stress, yes, that's a massive piece. I have a webinar for purchase (on sale) on my website on stress, LS, and vagus nerve - more info here: www.lostlabia.com/product/the-vagus-nerve-and-lichen-sclerosus-workshop/ - also consider coming to our FREE support meetups - www.lssupportnetwork.org/connect and finally, if you are looking for individualized support, I do offer 1:1 calls which you can learn more about here www.lostlabia.com/supportcall Thank you so much for watching and taking the time to comment. I appreciate you. With so much love, Jaclyn
I've been watching A LOT of interviews with LS/vulva specialists - many Doctors seem to put patients (to start) on 2x per day for the first month. My Dr. did and i'm so thankful. My symptoms were horrible. 10 out of 10 pain. 10 out of 10 itch - I couldn't sleep, all I did was try to survive. But after 2 weeks of 2x/day I would say my pain has diminished to maybe 40% and the same with itch. I can't even think about how thankful I am without crying. I am so sorry that it sounds like the Drs you have been to see really let you down. Thinking about Drs and how they do not educate themselves on a condition that is so horrendous and has the potential to not only put us into a painful hell as well as destroy our feminine anatomy -makes me very angry. If they SEE the signs, even though a biopsy comes back negative - they NEED to start the patient on steroids and continue to monitor the patient - OR refer them to someone who is more knowledgeable. I hope you feel better soon - you've been through so much - i'm praying you get to remission fast.
Thank you this is a question I needed answering .x
Hi, Sheila. So happy to hear I could help address a question you had. Thanks for taking the time to watch and comment; I appreciate you
@The Lost Labia Chronicles No .
Thank you you for taking your time to research this subject and putting into layman terms for people understand all the jargon. Bless you x
Does LS extend your your groin?
I was told to apply 2x a day for 30 days then two times a week forever. I was nearing the end of my 30 and got my period and the pad completely ruined me. Like on fire all over. The doctor told me to do 2x a day till I’m done with this flare. It’s been about a week and I’m still not great but I guess better. So I’m trying one time a day. It actually seems better at one time a day. BUT what did you do for the year it took for you to get in remission? Did you apply every day? Twice a week? And if it’s twice a week did you struggle with horrible symptoms the other days till you were in remission? I was under the impression to use the cream often while o have symptoms. Ugh. They feel like they will never stop!
Great video - thank you!
Aw, thank you so much!
Valuable
Thank you very much, Antoinette - I appreciate you taking the time to watch and comment.
hi I’m not diagnosed with lichen scelorus but I think I might have it ( incredible itch, burning, pain, my vulva looks pale like it’s sick) I’m seeing my dermatologist next week and I don’t think I’ll be surprised if she tells me that I have LS… but I don’t know why I’m really stressed out about the treatment not working, my main symptom is itch, I would scratch and scratch til im bleeding and I mean I can’t live like that anymore and I’m so scared that the treatment won’t work I had steroids before and it didn’t really help ( tho I don’t think I had the ones you’re talking about or maybe for a few days) anyway… I hope I’ll be ok but this video made me less anxious thank you !
I think I'm allergic to steroids. I had a very bad experience with Dermovate. Now I'm trying Momate and I'm afraid I will have an allergy again. How to understand if there is a reaction and which reaction is normal?
What was the ice-pack was your favorite, I can’t find it
The brand is Private Packs and www.privatepacks.com and if you use my code THELOSTLABIACHRONICLES you'll save 15% off of your order. With love, Jaclyn (ps. all my new 2023 videos are on LSSN's TH-cam channel, which you can sub to here: www.youtube.com/@lichensclerosussupportnetwork - I will occasionally still post here too, but the bulk of my 2023 vids will be on LSSNs channel
ThnkU❤ I really need to know if Epsom salt in my bath is OK for this condition?? I stopped, and now only put baking soda
Totally OK :) I use epsom salts all the time. The only thing I would say is any salt can be a bit drying, so make sure when you get out of the tub to either apply your steroid (which contains an emollient) or an emollient :)
@@thelostlabiachronicles ThnkU❤️🙏
I am in quebec, Canada, and never was I informed as I am now. I have to lean to be patient, applying more consistent methods(which I am) to hopefully get things into remission, I hope! 🙏
@@smileeveryday421 Pleasure :D
@@smileeveryday421 I was born there! I love that you are empowering yourself with education. Absolutely, you will get into remission - we will manifest it!
I am feeling worse with steroid ointment
How long though
I just checked out the LS Network diet information. I hold a masters degree in nutrition from Tufts University. I have reviewed their information and can tell you that it is impossible for anyone to follow. It does not include what to eat. All that is left is mainly meat, fish, and poultry. It looks like a good way to become malnourished fast
Hi, Donna. Super fair. I did not write that piece. And, if you look at the content I create, I actually never talk about diet for a myriad of reasons, including, but not limited to: 1) There are no robust studies linking diet to LS, and no robust evidence supporting the elimination (or even inclusion) of foods or food groups, 2) the way diet and nutrition is often discuss in the context of chronic conditions can be very problematic and triggering for folks with a history of eating disorders and can even lead to folks developing disordered eating, and 3) I can't speak from lived experience because I don't follow any diets.
I absolutely doubt that anyone would enter a state of being malnourished consuming meat, fish and poultry. I disagree with you - especially if they are including eggs and they are not sensitive to eggs. Also, There are many Drs who are also Carnivores - consuming only meat, organ meats, eggs and animal fat - and they are thriving. Perhaps you should listen to some experts on this. I honestly don't care what kind of masters you possess - I've found medical schools are completely dictated to by Big Pharma and Big Food industry - so i'm not surprised at your comment. Meat, in particular beef, is the most nutritionally dense food on the planet. I've been Carnivore for 3 yrs - Reversed type 2 Diabetes, high blood pressure , lost 90 lbs, no signs of the A-Fib I had - my Cardiologist had me wear a monitor for 3 months - I think you need to go back and further research things. Try listening to Dr. Anthony Chaffee, or Dr. Ken Berry, - there are many many Drs. who would totally disagree with you.
I’ve been using steroids for seven months…. Long story short, first health care provider advised just a few weeks with steroid and then go off… and I kept trying to do this, and it worked great while I used the steroid, but when tried to go off it was unbearable…then another provider said to use it until June to get everything under control…NOW… it’s flaring up while using the steroid but it’s still munch bettter than with no steroid
I'm so sorry to hear this. I wonder if you can get a second opinion from a doctor that really knows LS. LSSN has an LS provider directory here: www.lssupport.net/providers - with love, Jaclyn
@@thelostlabiachronicles thank you
Too many words