Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Thoroughly read and copy all pages of Dr. Bihari's website. Give website pages to your doctor. Do not use lactose or cornstarch as a filler as they could cause too much stiffness. Use Avicel, Calcium Carbonate or Liquid LDN with no filler. Most start out with 3.0mg and then work their way up to 4.5mg. You will have to be the judge of the dosage your body will tolerate. Pay close attention to the compounding pharmacy update on Dr. Bihari's site. If you still have stiffness with the good fillers then lowering your dose is what Dr. Bihari suggests. Have your neuro call Dr. Bihari so that your neuro can get a better understanding of LDN. The Low Dose Naltrexone Homepage http://www.low dose naltrexone.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Oh Kasia! I want to give you a huge hug and take away that pain. I know all to well about childhood teasing, and sasly some adult incidents as well. I will say since I have grown into my own person, I have learnd to embrass and love my eyes. I wear them proudly. I have no choice to, but if I did have a choice, I would chose our eyes, for sure. Let me begin by letting you know I am VERY open and honest an NO question is off limits. I feel like I went through all these surgeries and testing so I can share my experience with anyone who wants to listen. I am so sorry you went through your life feeling so different and no answers as to why. And what an awful feeling to have stumbled accross the disorder, and taking a blunt shock. Who would have thought fertility and our eyes would be connected. And how sad too. But at least we are alive and well, and for the most part blessed. From your post, I truly feel you do have type I, I have NEVER meant or heard of a female that doesn't have type I. I have founf in my research that only men had Type II. That is not to say there are no woman out there with Type II, it is just in my research and findings. My doctor also confirmed he has never heard of any female not diagnosed with type I. I went through POF (premature ovarian failure). I had periods in my teens, then around 18, it started to become very sparatic, and when I did have it, very light. I knew something was wrong, because my eldest sister, who has it as well, was trying to get pregnant (she is 6 years older), and she went to a genetic dr who informed her, and then me about the Type I vs. Type II. And of course, she and I had type I. She got pregnant, through IVF and an egg donor (my middle sister). I decided to adopt. I truly believe you never can say never, so I do pray that one day I will wake up prgnant, but I do not plan on it happening. That way I wont get let down. Or try not to. :-) Before my sister and I were diagnoised with type I, my sister had tried for 5 years to get pregnant, with fertility and on her own. IVF is possible, but through an egg donor. You of course can try to get your own eggs, my sister did produce some eggs, they unfortunitely did not work when trying to create the embryo during IVF. My adoption took from application, until he was home, about a year. We adopted from Guatemala, our domestic (USA) adoption failed, when the birth mother chose to keep the baby. It all depends, and I will help you through EVERY step of the way if you need me to. I know a lot on this too.... I am from Mansfield, Massachusetts. Where are you from??? Your last question is not silly, it was actually the most concerning question for me to. We of course will have some complications, but nothing that will make us too different from our peers. Modern medicine is wonderful. When it comes time, probably around 40, we'll have to talk to a dr about hormones. I have went the POF at age 21, and I am healthy and normal for a 30 y/o. Please feel free to email me here or at my personal email michelle888_99 which is @ , or call me. email me and I will email you my number. I hope that I helped you, and I look forward to talking more and more. All my love and compassion. Love, > > Hi , > > I feel like I have thousands of questions for you And so funny I > thought I was all alone as well, besides my father and younger sister > and then I discover this group I'm 29 and as written before I have > problems to get pregnant, maybe this will never happen as so I would > like to know everything, what you're willing to share... > > As I wrote here before: Since I can remember, I knew my eyes were > different from all other children at school and so on... I've noticed > it quite early, as people are not always very tolerant of any > otherness' and they gave me quite a hard time... My parents told me, > that I had two surgeries when I was small, because my eyes were so > small... However they never mentioned to me, how this disorder is > called. Some time ago I've started to search for information about > this disorder and what I finally found - just devastated me - I have > the full symptoms of BPES, I'm not sure as yet of which type, but > judging from my missing periods since a year already - probably type > 1. This is absolutely shocking for me - to discover all this things > just by accident... > > I'm not sure, if I can ask you this kind of question, but have you > missed your periods as well or did you have any other symptoms... Did > you try long time to get pregnant or you were diagnosed as BPES Type I > long time ago and you knew there are no chances. And does it mean > there are no chances at all? And if somebody has BPES Type I, does > this mean no own eggs are available any more? Is IVF possible? Or > maybe IVF with donation egg? Any chances for that? Or the only option > is adoption and how long does it take, since you first fulfill the > application until the baby/child arrives by you... By the way, where > are you from? And one more question, which concerns me a lot, if I > will have POF, does this mean: will I be older faster? Will I be like > an old lady in body of young person? I know, it sounds maybe a little > bit silly, but I just don't know... > > You even can't imagine how much I will appreciate all those answers > you possible can provide me with... > > Looking forward to hear from you - Kasia > > 2009/5/20 <michelle888_99@...> > > > > > > I could not be more thrilled to find this group. I thought I was all alone, besides my father and oldest sister. I am a 30 y/o female, with Type I. I have many answers about the fertility questions (recently adopted a child), and have had 3 surgeries. I will post picture under _Murray_ in the photo section. > > > > Please feel free to ask me some questions or count on me for some support. > > > > GOD BLESS YOU ALL.... we are blessed with these eyes, don't eer feel any different. > > > > XO > > > > Murray > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Hi Kasia, My husband nor I have bleph nor does anyone in our families but our 2nd son did get it...? Makes him extra special:) You can view his pic, hes wearing the pumpkin suit as a baby, but is now 6 and just had his first surgery, there are pics of the op b4 and after as well:) I just want to let you know that there is hope for getting pregnant as we have met 2 families here in NZ, one right here in Christchurch where we live and they (the mothers) have bleph and have both had babies, our good friend here has 2 children, a boy and girl and her whole family has it...So there is hope:) And even a chance that your child may not have it but who cares if they do! Atleast you got to experience having your own child, theres nothing like it in the world, and having bleph is NOTHING compared to what some parents are dealt:( Its seems such a cosmetic thing, but I know people can be cruel, we have had our fair share of cruel comments and remarks from kids as well as adults about our gorgeous wee man....But in saying that, he's a normal wee boy, developed just like his brother, nothing was different at all...Anyways, good luck ok.... leanne NZ > > > > Hi , > > > > I feel like I have thousands of questions for you And so funny I > > thought I was all alone as well, besides my father and younger sister > > and then I discover this group I'm 29 and as written before I have > > problems to get pregnant, maybe this will never happen as so I would > > like to know everything, what you're willing to share... > > > > As I wrote here before: Since I can remember, I knew my eyes were > > different from all other children at school and so on... I've noticed > > it quite early, as people are not always very tolerant of any > > otherness' and they gave me quite a hard time... My parents told me, > > that I had two surgeries when I was small, because my eyes were so > > small... However they never mentioned to me, how this disorder is > > called. Some time ago I've started to search for information about > > this disorder and what I finally found - just devastated me - I have > > the full symptoms of BPES, I'm not sure as yet of which type, but > > judging from my missing periods since a year already - probably type > > 1. This is absolutely shocking for me - to discover all this things > > just by accident... > > > > I'm not sure, if I can ask you this kind of question, but have you > > missed your periods as well or did you have any other symptoms... Did > > you try long time to get pregnant or you were diagnosed as BPES Type I > > long time ago and you knew there are no chances. And does it mean > > there are no chances at all? And if somebody has BPES Type I, does > > this mean no own eggs are available any more? Is IVF possible? Or > > maybe IVF with donation egg? Any chances for that? Or the only option > > is adoption and how long does it take, since you first fulfill the > > application until the baby/child arrives by you... By the way, where > > are you from? And one more question, which concerns me a lot, if I > > will have POF, does this mean: will I be older faster? Will I be like > > an old lady in body of young person? I know, it sounds maybe a little > > bit silly, but I just don't know... > > > > You even can't imagine how much I will appreciate all those answers > > you possible can provide me with... > > > > Looking forward to hear from you - Kasia > > > > 2009/5/20 <michelle888_99@> > > > > > > > > > I could not be more thrilled to find this group. I thought I was all alone, besides my father and oldest sister. I am a 30 y/o female, with Type I. I have many answers about the fertility questions (recently adopted a child), and have had 3 surgeries. I will post picture under _Murray_ in the photo section. > > > > > > Please feel free to ask me some questions or count on me for some support. > > > > > > GOD BLESS YOU ALL.... we are blessed with these eyes, don't eer feel any different. > > > > > > XO > > > > > > Murray > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Hi Leanne, thank you sooo much for your massage, it gives me some hope... And I absolutely don't mind, if my baby would have BPES because like you said it will make him or her even more special )) Your sweetheart, it's absolutely amazing - I saw the pictures:) And somehow I feel children with BPES are even more funny and intelligent then the other children and we all know, what I'm talking about )) My entire life, I was sure that whatever disorder I have, it is just affecting how I look and it was a shocking discovery, that this is not only affecting my eyes... Who could know??? I wish you all the best for you and your family! Yours Kasia 2009/5/21 leanne30nz <tltne@...>: > > > Hi Kasia, > > My husband nor I have bleph nor does anyone in our families but our 2nd son > did get it...? Makes him extra special:) You can view his pic, hes wearing > the pumpkin suit as a baby, but is now 6 and just had his first surgery, > there are pics of the op b4 and after as well:) I just want to let you know > that there is hope for getting pregnant as we have met 2 families here in > NZ, one right here in Christchurch where we live and they (the mothers) have > bleph and have both had babies, our good friend here has 2 children, a boy > and girl and her whole family has it...So there is hope:) And even a chance > that your child may not have it but who cares if they do! Atleast you got to > experience having your own child, theres nothing like it in the world, and > having bleph is NOTHING compared to what some parents are dealt:( Its seems > such a cosmetic thing, but I know people can be cruel, we have had our fair > share of cruel comments and remarks from kids as well as adults about our > gorgeous wee man....But in saying that, he's a normal wee boy, developed > just like his brother, nothing was different at all...Anyways, good luck > ok.... > > leanne NZ > > >> > >> > Hi , >> > >> > I feel like I have thousands of questions for you And so funny I >> > thought I was all alone as well, besides my father and younger sister >> > and then I discover this group I'm 29 and as written before I have >> > problems to get pregnant, maybe this will never happen as so I would >> > like to know everything, what you're willing to share... >> > >> > As I wrote here before: Since I can remember, I knew my eyes were >> > different from all other children at school and so on... I've noticed >> > it quite early, as people are not always very tolerant of any >> > otherness' and they gave me quite a hard time... My parents told me, >> > that I had two surgeries when I was small, because my eyes were so >> > small... However they never mentioned to me, how this disorder is >> > called. Some time ago I've started to search for information about >> > this disorder and what I finally found - just devastated me - I have >> > the full symptoms of BPES, I'm not sure as yet of which type, but >> > judging from my missing periods since a year already - probably type >> > 1. This is absolutely shocking for me - to discover all this things >> > just by accident... >> > >> > I'm not sure, if I can ask you this kind of question, but have you >> > missed your periods as well or did you have any other symptoms... Did >> > you try long time to get pregnant or you were diagnosed as BPES Type I >> > long time ago and you knew there are no chances. And does it mean >> > there are no chances at all? And if somebody has BPES Type I, does >> > this mean no own eggs are available any more? Is IVF possible? Or >> > maybe IVF with donation egg? Any chances for that? Or the only option >> > is adoption and how long does it take, since you first fulfill the >> > application until the baby/child arrives by you... By the way, where >> > are you from? And one more question, which concerns me a lot, if I >> > will have POF, does this mean: will I be older faster? Will I be like >> > an old lady in body of young person? I know, it sounds maybe a little >> > bit silly, but I just don't know... >> > >> > You even can't imagine how much I will appreciate all those answers >> > you possible can provide me with... >> > >> > Looking forward to hear from you - Kasia >> > >> > 2009/5/20 <michelle888_99@> >> > > >> > > >> > > I could not be more thrilled to find this group. I thought I was all >> > > alone, besides my father and oldest sister. I am a 30 y/o female, with Type >> > > I. I have many answers about the fertility questions (recently adopted a >> > > child), and have had 3 surgeries. I will post picture under _Murray_ >> > > in the photo section. >> > > >> > > Please feel free to ask me some questions or count on me for some >> > > support. >> > > >> > > GOD BLESS YOU ALL.... we are blessed with these eyes, don't eer feel >> > > any different. >> > > >> > > XO >> > > >> > > Murray >> > > >> > > >> > >> > > Quote Link to comment Share on other sites More sharing options...
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