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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About castor

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  1. None of the diets are working for me either, I'm just not digesting anything, and now with my colon and everything so messed up, I'm becoming alergic to anything I eat regularly, so.... I have no idea what I can even eat now. I feel horrible no matter what I do. The reality is sinking in about this. I've known something was seriously wrong for several months now. There were all the signs my body was falling apart. I've lost 55 pounds now, and it's not stopping. My hair has been falling out for about a month, I bruise like a ripe fruit. Where I had an IV recently stayed black and blue for over two weeks. Then there was just how I felt and the convultions.... I've known I was.... There were the clusters of Lyme in my blood, looking of pictures I realize that's what that was, I didn't know when I was looking at it... The guy seemed very concerned but I could tell didn't want to show it or even pointed out the clusters and seemed to move over them quickly. For 8 years I've been trying to tell people there was something seriously wrong, but nobody ever took me seriously and just told me to see a therapist. Now with how Lyme has been turned into a taboo in the medical feild because of money and profits, I don't think I am going to be able to get any real treatment, I haven't been able to work much the last 3 years so I have nothing, and nobody in my family does either. The reality is sinking in that I might not get better and I could very well.. .. .. I wish I still had friends, This last year has been so lonely, but I have trouble talking with people and it just never goes well. This isn't exactly how I saw my life going.
  2. It's confirmed (kind of...) I have Lyme. I found a 'voodoo' doctor in my area, and I'm not going to give many details about it all, as to most it would be quack work, but he has a powerful research type microscope in his office, with a camera and monitor hooked to it, did a blood sample/ slide, and it looked like a battle field. Some red blood cells had crystals in them, holes. There were little dot type parasites jumping all around, plauges, about everything. And.. we found a couple spyroci bacteria swimming around. I mean, I myself saw the bacteria swimming around my blood cells with my own eyes. I guess that's not seen as a way to diagnose Lyme for some reason, and he said too that he doesn't diagnose, he just shows what's there and tells you what you can do. Everything is messed up in my body though, horribly. My hair is falling out now too. He said the diet was very good that I started, but there is a lot I have to do before even worrying about what I am eating. I think I can trust this guy, he saw me for free, and gave me a book to read and just said to bring it back. He seems to be in it only to serve and help people, but most would take this place for a voodoo hocus pokous kind of thing. I'll see if what he has me do actually helps. I don't want to give out any more details than that on here, if anybody wants to know more about it, pm me.
  3. Hey everybody, I'm still around. Things have just been such a roller coaster and I want off, ha. I've been reading everything everybody posts or links people send me, and also parts of other threads and things online taking in as much info as I can as well as putting things into practice at the same time. I've been so busy and so much is going on, I just haven't had time to really even reply to anything, but to everybody that has posted and sent me information, thank you, you guys/gals are the only ones that believe there is anything wrong with me other than I'm either 'crazy or lazy', even my family. I got in a fight with my dad yesterday over all of this, him accusing me of starving myself to get attention, and going on about how I must love how everybody is paying attention to me.... Uh... not really, since everybody that is paying attention to me here, is all negative attention. I just want to this stop, go away, get better..... *sigh* It ended with my emotions rocketing and storming out with no coat and walking around the neighborhood in half convulsions (the MS type stuff gets a lot worse when I am upset). I just want one person on my side here... I'm fighting even my family on getting any help and my two friends here have stopped talking to me as I guess to them I am just looking for something to be wrong and they are sick of me being depressed. I hadn't post this yet, but I decided after talking with my therapist a week and a half ago, to just leave here, any way I can, some of you have mentioned that I should relocate too, and I've been trying to, when I got really sick over two months ago, it was while I was visiting my sister on 'vacation' trying to relax before going to a new place to live. I got stuck there because of tropical storm Fay (was in Florida) and the stress got really bad, I think triggering the worst of what has been going on after we went to a dance club and I drank. (rarely ever do, first I had more than one drink in a number of years) So I got very sick, and ended up coming back home here, fighting to get better. Now I'm looking at being homeless soon, and everybody turning their back on me believing the doctors who are saying I am making this up. I started the SCD diet minus dairy about 10 days ago. My weight has leveled off and I haven't had D since I started! Been hungry though, I'm out of food stamp money and didn't have a lot left to get what I needed.... Going to have to stretch out what I have left. Getting sick of drinking water. I messed up on the diet three days ago though, it was an idiot moment for me, ha. I got up and was really hungry and in a bit of a fog and got a bowl of cereal and was sitting there eating it and it finally dawned on me, what the heck, I'm not suppose to eat this!!! I since gave all my illegal food to my parents so I don't do that again. My plan is I am going to write a few churches (I'm Christian) and see if one that does help in communities could help me get a start there, and my parents are going to buy me a train ticket and I'm off. It will be stressful to do, but this place is toxic for me, and can't really get better till I remove myself from a completely dysfunctional family. I'm eyeing Arizona, have been wanting to go west for a while now, anybody know if there are good doctors in that area? (you don't have to say who, just if there are) Plus it's warmer there, last winter and this fall I've lived in 60-65 degrees to keep my heating bills down, though the cold doesn't bother me too much. I've been working on all that the last 10 days while trying to get my body in some kind of health so I can move soon enough, looking at in about two weeks. On top of all of that, the person I talk to everyday and who has been there for me through all this tried to take her life last week........ didn't see that coming. I got a new herbal tea yesterday and had an allergic reaction to it, ha, now I'm having exploding allergies, great. I'm still embattled to make a life for myself though. There's so much I want to do yet. I just want the roller coaster of the last 8 years to finally stop. I'm having to stop it on my own though without any support, but if anything I know I've been made strong over the last 8 years and very resourceful. Once I leave here I'm guessing my internet access is going to be pretty sporadic for a while, so that's why I'm trying to collect any information I can now. Well, I've got some cleaning and laundry to do, starting to go through my stuff of that I am going to take with me.
  4. I have a question for the lymies. Lyme can cause a lot of different symptoms, but can it affect just one part of the body? Take up a stronghold in mostly your brain and spine? Most of my symptoms most of my life have been primarily neurological, with things similar to MS, recently getting worse when I started losing weight. I have other things going on in other parts, but the main things have always been with my nervous system. Can lyme be that I guess picky of where they root?
  5. Hey, sorry it's been a few days, been somewhat busy. I got a call this morning about getting in to a gastro doc that I was on a waiting list, and could get in today, but had to be there in about 4 hours. Had to twist a few arms to get a ride there, but it was pretty much pointless. I think I would have gotten the same reaction if I went in saying my gills don't work anymore, can't breath under water!!!! I am so sick of being treated like the crazy person that got must have got loose... guess I have to humor him. I'm not crazy.... This time was just plain blatant - leave me alone. The follow up app to, 'check my weight' in two months, is with a different doctor, so the 'crazy person' gets shoved off onto another doctor. Should have listened to my therapist, he said there is no doctor here that is going to take me serious. I'm going to have to just take as good of care of my body as I can for now, and get out of this area, this place is toxic for me. I've moved on from my past, it's been two years since I've had those problems from before, but it's because of my past I can't get my life moving again. It's just haunting me now, people just won't let it go, which is actually causing me loads of extra stress, so I am going to take my therapists advice and 'get the hell out of Indiana'. Ha, sounds better by the second. I need sleep.....
  6. Hey Carla, it was actually your post in my first thread on here that got me wondering about lyme. I had suspected lyme in the back of my head for years, but I never knew much about the disease and always thought it was rare and mostly just people that were outdoors all the time would usually have it and never remembered anything about a tick bite. I did some more research after reading your reply back then, and the more I read, the more scared I got realizing it was most likely that all along. Some of the things and peoples stories have almost been like reading about myself. It's very good to hear you are getting top treatment where you are now in Germany, keep us updated on your progress when you have time! I'm going to take a look at the site you mentioned tomorrow, I'm headed to bed right now though. Crap, it's 6:30am... I hate my sleeping patterns. -------------------------- Oh, one thing to anybody reading this. I'm looking for a detox diet, I've found a few things, but a lot of what I read are people talking about the diets, but not what exactly the diet is. A lot point to books that tell of this or that diet, but I can't buy any books right now though I wish I could. So, if anybody has some links that better spell out specific diets, and not just about the book the diet is in (seems all I keep finding are sites about diet books and not what's in the diet) that would be very very helpful.
  7. I guess I'll start in my childhood when I believe I would have been infected with lyme if that's what it is. I'll try and keep this part short. I was born just outside of Philadelphia, but moved to where I am now, the very northeast part of Indiana right before I turned 5. My dad is full sicilian, and has the Italian temper to go with that. He was abused severely by his stepfather, which translated into how he dealt with my sister and I. I went through years of severe emotional abuse which sometimes turned physical. I won't go into all that, but to give you an idea it was the kind of situation where as a little kid you feared that any day he would snap and beat you to death. His favorite thing to say was 'I brought you into this world and I can take you out'. I wasn't a trouble maker or anything though, pretty much the opposite, always kept to myself, horribly shy and never said much and tried very hard to do well to please a father that could never be, but I did anyway to help keep him from doing anything worse than he already was. (unlike my sister who would provoke him till he would punch her). Every summer from around the age of 6 till I was around 11-12 my sister and I would spend about 3 weeks at my grandmother's, who lived on a lake pretty well in the middle of nowhere. She had a big hill on her property covered with trees and I'd spend most days running around up there (tall grass and all) playing games little kids do. I would suspect if I have been bite by ticks, it was then but I was too young to have really noticed if I had been. A few times while there I had gotten very sick, if I remember right one time looked like a horrible flu bug (though it was the middle of summer). The other time I had actually contracted pneumonia but I had been out on a unseasonably cold day in the rain fishing. I was actually hospitalized then from severe dehydration and could have died. Ha, that was the last time I spend the summer at my grandparents. (this was still in Northeast Indiana, where I have no idea if lyme would be more prevalent here or not, anybody know?) In school I was always known as the smartest kid in the class, the kind of odd ball people just make friends with so they can copy their work. Never had many real friends, and none that lasted, I was always so... I guess different than everybody. My mind just didn't seem to work the same, and I never understood the kids around me or why they acted like they did. From this I became a bit of a recluse, Our school system was awarded a grant when I was in 4th grade for each student to take home a computer, with which I quickly excelled. In fifth grade they would actually have me go around to different class rooms and fix computers that were messed up, and I was often almost training the teachers on how to use different programs. I soon after discovered the internet and the joy of disappearing in the veil of anonymity. At this point I rarely left my room, I wasn't allowed to have friends over the house, and nobody ever invited me over so I spent most of the time out of school holed up in my bedroom avoiding my father. I always scored very high on everything, was in the gifted and talented program and such. But my intelligence was different than others, it was more big picture and impractical, my memory was never that great and spelling was my death. Still is but I have the spell check program going right now but even it has no idea what I am trying to spell. Towards the end of middle school though I started having problems concentrating, being organized, and my handwriting went from being immaculate to chicken scratches. I continued to do well, but it was like I could no longer keep my mind focused very long. I was an avid reader having always read several grade levels past where I should have been but it was becoming harder to concentrate on what I was reading. I had been in band since middle school, always had a love for music and joined the high school marching band in 8th grade (they would take 8th graders to increase numbers). I made some friends in that as I spent days on end with them all and things seemed to be going decently. In high school the stress of an abusive father was starting to get to me though and was becoming more and more depressed and just wanted to get away so badly. I focused more and more on my studies so I could get into a good college far away from my family. I became more and more the reject in the school though, that didn't fit in exactly anywhere and I continued to keep to myself while becoming more and more of the odd one out, people just didn't get me. Somewhere around then during a physical they discovered I had protein in my urine. They didn't do anything other than have me come back a few more times to recheck things, maybe gave me a prescription, don't remember anymore, but it soon showed up clear and that was that, never had figured out why. Shortly after I then developed a strong intolerance to eggs. It became evident while I was on a trip to a marching band competition and very stressed out. (marching band in a school that is very competitive with it can be extremely stressful, some that have been in it might know what I mean). Since then I haven't been able to eat any sizable amount of egg without having to run to the bathroom a few hours later (with often very painful consequences). Oh, an odd thing from when I was very young is I would get horrible D from drink black soda's, coke/pepsi or Dr. Pepper, but not root beer. It was something I grew out of but never did figure out why. It was my sophomore year that I got a letter in the mail about an invitation to apply to the Indiana Academy. It was a state run and funded academy where you would live in a dorm donated by Ball State, on campus, and go to school in a college setting and difficulty for your junior and senior years of high school. What you would get out of graduating from there, was an almost guaranteed full scholarship to most any college you wanted to go to. I had very few friends, none I would go and hang out with, most people avoided me like I had three heads, and I desperately wanted to get out of the house and away from my father and this was my ticket out. Oh, there was also the very strong rumor that everybody believed of that I was gay (which it has turned out I am very much not, never was, I was always just so 'weird' and extremely emotional. I ended up crying in middle school twice at school.... Haaa, that never goes over well for a guy. But I have always had such overpowering emotional responses. I remember back then too, leading up to the academy, I had regular horrible bouts of D when I would get stressed out, but it was always dismissed as just caused by stress, which seemed to fit. I applied to the academy, jumping through this and that loop, doing interviews, get recs from teachers, filling out this and that, and towards the end of my sophomore year I got the call telling me I was accepted. One out of 150 students from the whole state that they pick each year. I was ecstatic, I was getting out of an abusive situation. The last day of my sophomore year, I pretty much told everybody to F off, they were all bustards to me and go F yourself.... haaaaa, I didn't think I would be going back and a lot of them made my life a bit of a hell. Well, that's everything leading up to what happened at the academy, the first real traumatic occurrence after which I when downhill like a sled with a rocket on the back. All of what I wrote up till then, was the actual 'normal' part of my life. I was that weird guy in school that everybody knew would be successful, I wish that came true. I scored a 1440 on the SAT's half way through my sophomore year with a 139 IQ, how could I not be successful? Try completely losing it, drug after drug, three suicide attempts, two near fatal car accidents, developing a drug addiction (which led to a weeks jail stay), 6 inpatient stays in mental wards, being rushed to the ER numerous times, and three months in an institution. I've moved past all the things with the drug addictions, and problems with mental illness, my mind is a lot more clear now, after I refused to take anymore pills that just messed me up more. Been clean for over 2 years, but I just can't seem to get my life going again, and now this with my body. Generally, I think things like that can mess up ones life. More details on all of that probably tomorrow, but it is all those things that have left me where I am now, penniless, filed bankruptcy, not a single friend, nobody trusts me or even wants much to do with me, and soon to be homeless. Just so anybody knows, moving in with a family member is sadly not an option, nobody in my extended family wants to even be in the same room with me, and my dad had attacked me two years ago, and my sister may be going into a divorce over money issues and thinks I am scum... So, I am on my own with this, and because of my history, I have yet to find a doctor that takes me serious. I have hope still, I still have a drive in me. There's a girl I talk to everyday online that has keep me going, and to her I owe my life or I wouldn't be here now.
  8. I have a feeling this is going to be another sleepless night so I am going to sit (lay) here and type out a lot of what has led up to now, it will most likely be somewhat lengthy, but that is more because so many things have happened, has just been one horrible thing after another most of my life. Plus, in reading an article written by the doctor who was on the forefront of treating lyme that took his life (can't remember his name) about people that have chronic lyme, they tend to get very wordy and into details in everything they write which I am very guilty of, to the dismay of friends that would get 3 page emails from me all the time. I was a great at essays at least...... I'll try to keep to relevant details though, try at least. Ha, one thing that stood out to me in your post nora_n was about how mold is known to cause lyme to flare. Heh... wondered if there was any connection to that. The last apartment I was in was the top floor of a very very old brick house, built about 1890. It was cheap... $300 a month plus gas and electric. About two months in, the roof started leaking where the chimney was like there was an open skylight. There was a drop ceiling and the water would spread out on the drywall and come down through the seams, so whenever it rained, it rained in my living room. I complained and was assured it would be fixed in no time, (if only she wasn't a slumlord). It was about this time I lost my job and couldn't find another one. So as time went on, and her continuing to assure me, then saying nothing could be done yet because she was sueing the guys that put on the roof and until that was over nobody could touch it. I should have taken legal actions myself or gotten out of there when I look back on it, but there wasn't anyplace else and I was becoming severely depressed and wasn't in a state to really do much about it. After about a month or so, the mold started to appear. The ceiling at this point was sagging in a lot of place and around the chimney started to turn grey, then black. I lived with it like that for 4 months. Why didn't I do something about it in that long? My reason was I had no income and couldn't pay rent and was two months behind, and I didn't want to push things and end up without a place to live. After four months I guess she won the suit and carpenters came and redid the ceiling and walls and supposedly fixed the leak. When they were tearing down the ceiling drywall, I found there was a double layer and between the two layers was solid black extending out from the chimney covering half the ceiling. It was around then that I stared to not do as well physically, more daily pain of what I assumed was from my two car accidents. I lived there another about three months and moved to where I am now about 5 months ago, which shortly after is when I started to drop weight. From 220 (bit overweight for me but I'm somewhat tall with a larger frame) to where I am now at 170. I'm going on a full detox regime starting tomorrow, or at least as much as I can figure out what to do to detox, I'm thinking that is a must right now. Told you I get wordy. I'm going to do a couple things and come back and write some more.
  9. Hey everybody, I'm feeling a lot better today, had a long deep sleep last night. Does anybody here with lyme, when they get flare ups have problems with insomnia during? I thought of something everybody here could help me with, and I think it could help a lot. - diet At this point, I really don't know what I can/should eat anymore. I don't have a diagnosis, but one thing that is shown is bacteria is screwed up in my guts, but with doctors I've had no advice on what diet I should be on. For now I'm just going to skip worrying about getting a full diagnosis, and do what I can myself right now, try and detox a bit and go on a strict diet of things that should be safe. (finding out that with medicaid and the doctors here, since it's not a cut and dry illness, the medicaid is somewhat pointless - more on that later today). The one thing I can control though is what I eat. I've stopped drinking soda several weeks ago, cut out most all caffeine (still drink tea), and haven't eaten fast food in a few months. The good thing is I love healthy type foods, I usually have some amount of fresh fruit, and I eat salads a lot, so I don't think a diet like this is going to be a huge stretch for me. What you can help me with, is to suggest what things I can or should be eating (I know that's hard without knowing what exactly I can't eat, but there has to be a small list of generally safe foods) Pretty much, those on a strict diet, what's on your shopping list?? It looks like there could be an intolerance with gluten, though not full celiac disease, I've had bad problems with eggs since I was 13 (btw, I'm 24 if anybody was wondering), so that's already been out of my diet, but I think I should exclude things related to eggs, might be developing a lactose intolerance now, and I have read and heard people say simple carbs and sugar are a no no. I'm not sure if candida is a problem, never had signs of that but I could have missed them or are covered up by other things. So, what does that leave? What should be on my shopping list? Knowing that would help me more than anything right now, as I have no idea what to even eat or buy at the store anymore. I don't have any income, but I am on food stamps, and get the highest amount for it, so I do have money for food, but it's a fixed income, so simple and cheap will go a long way. (I'm all for flavor... so if there are safe ways I can jazz things up, some tips on that would be appreciated too, I love to cook and am generally good at it, so I'm good at putting simple flavorful things together, but I just don't know anymore what is 'safe') Oh, also, what things can I do to help detox? I'm leaning towards thinking that is a big problem right now too. Any info you can give me would go a long way right now, I'm going to get around and pick up a little around the house, things get disorganized a lot during my down days. When I get back I'll start to write more about what is going on now, and what all has lead up to this (I've cheated death 5 times now.... ha) Thank you everybody, I mean that.
  10. meant to write more yesterday but this flare up has been pretty bad though but am feeling on the up today, again seemingly for no reason at all as I go up and down. Stress seems to be my catalyst though, it was an, I guess tragic (to me at the time) occurrence in my life 9 years ago after which I've never really recovered, mentally or physically. I will write more soon, thank you for the responses - and give more specific replies, but right now I am still pretty tired.
  11. Thank you very much AliB for your reply, in making this post I am looking for direction, but also just... some kind of support.. I've been going this alone for so long and it's just now everybody is almost pissed at me that I'm still sick (or to them, so I say I am). I just had another argument with my father, that turned into a yelling match again over if I am actually sick or if I'm just faking it so I can be 'lazy'. I can't keep arguing about this... I need somebody here to believe me, but the doctors saying they can't find anything wrong isn't helping my case. I am coming the the conclusion though that it is lyme from as much reading as I've been able to do over the last week (I have to take breaks and some days I can read something 5 times and still not remember what I just read, doing better today though) and the big red flag is I have 52 of the symptoms on the list, which also discludes a couple I'm not sure about, though I left a few I question a little too. Most all of these are current (and when I brought up lyme to my doctor he says I don't have anything that would point to LD) Rashes on other parts of your body ?? Raised rash, disappearing and recurring ?? - I get what have been called boils on my back Headache, mild or severe, Seizures Twitching of facial or other muscles Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose Double or blurry vision Pain in eyes, or swelling around eyes Oversensitivity to light Decreased hearing in one or both ears, plugged ears Pain in ears, oversensitivity to sounds Diarrhea Constipation Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease) Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia) Shortness of breath, can't get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats --- this is a maybe Tremors or unexplained shaking Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Panic attacks, anxiety Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Speech difficulty (slurred or slow) - only sometimes Stammering speech Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well - not 100% sure Low body temperature Allergies/Chemical sensitivities ---- this is getting really bad lately Increased effect from alcohol and possible worse hangover I'll post more of things going on currently a little later today, my minds clouding up now. Celiac was for the most part ruled out, though could have a bit of an intolerance, but gluten free for two weeks didn't do anything. There's been no rhyme or reason of what I eat and how I feel, the same exact thing will be fine one day, then the next it doesn't seem to agree with me, but I can't get people away from just focusing on gastrointestinal problems, the other symptoms I try and explain and they just seem to ignore me. The gastro stuff really isn't nearly as bad as the other things I'm feeling. Going to rest for a bit
  12. I don't know if this is the place to post this, but this is where the lyme thread is and was pointed to it a bit back when I first posted here. It's been a while since I have posted but since my last post I've fallen off the radar for a while.... Been somewhat incapacitated in that time and have gone through many tests... all showing I am supposedly perfectly healthy, except for one thing, a somewhat major imbalance of good/bad bacteria in my guts and was told to start taking probiotics immediately. That seemed to be doing a lot of good for a short while, less bad days and better good days and my weight leveled off, but just last night into this morning I had another horrible flare up of symptoms though this time did not include diarrea though I am feeling worse than ever.... Had a bad episode of convulsions in my right leg in the middle of the night, which they keep trying to tell me is RLS though they have never seen it happen.... Uh huh, sure, my leg jerking around sometimes pretty hard is just RLS. *sigh* I've been reading what I can on lyme, but I have problems with reading anymore, have for a while, which, in the reading I've done seems to be a very common thing. A lot of peoples stories I feel like I was reading about myself at times. I know what I need to do, find an LLMD, but my situation is a little more complex. I am on Indiana Medicaid disability, no income, no savings, no assets, and just got my bankruptcy discharge letter yesterday (bankruptcy was because of mostly past medical debt as well as some bad money management during an 'epidose') I've been turned down for SSI disability twice as I'm in effect too smart to be mentally disabled and my physical problems have no medical backing. I'm soon to be homeless, pretty much as soon as they post the foreclosure on the house I have been living in temporarily which could be any day now. My parents aren't uh... exactly supportive and recently said instead of moving in with them if I have to, it would probably be best if I found a homeless shelter. I've last all friends from me just being... me, which at times can be very irritable and irrational, and to most, irritating. Soo... I have nobody, nothing, no car either, and I'm too sick to work but everybody just thinks I want attention and for everybody else to take care of me so I can have it easy. -- Those are close to actual words I hear a lot from family and such. I'm realizing it would almost be better if I had cancer at this point as it's something people and doctors actually take serious. This is my dilemma, I have the Medicaid, but with how there is the controversy with treating lyme, is that going to do me a lot of good? I can't pay for any treatment out of pocket as I have zero dollars and don't see any real income in my near future and I don't really see myself traveling to see a good LLMD. I want to get the Igex... something lab test I read about, but I don't know how that is going to happen if medicaid refuses to pay for it. It's pretty much, I either get all treatment through medicaid for this, or I won't be able to get any as I am not going to go severely into medical debt again. What to do. I am pretty sure it is lyme, but I don't even trust myself anymore. I've been accused so many times of trying to self diagnose and to just let the doctors do what they do, if I try and tell anybody what I think is wrong, they just ask if I am still taking my meds (psychotropic). I don't know if I am sane anymore to tell the truth. I am going to try and write down some of my story over the next few days on here, and hopefully somebody will be able to tell from it if I should seriously seek out treatment for Lyme, or if I'm just jumping to conclusions again. I also want to get it written down so I have it as reference later as I tend to forget things when in the doctors office. I just don't know what to do anymore, I feel like I lost the fight a while ago.
  13. Hi Castor!

    Hope you are having some better luck!

    feel better!!!

  14. Okay, finally have the results of my blood panel in hand, even after looking at several others and reading how people read them... I still have no idea how to interpret this all that well. I'm just going to type out the whole page.... Celiac Serology Profile JLP Endomys. Titer NEGATIVE IgA 204 mg/dl Range: 70-400 TTG IgA 3 EU Range: 0-19 <20 EU = Negative 20-30 EU = Weakly Positive >30 EU = Positive Interp Data See Note Interpretive Data: Gliadin IgA 20-30 AU Gliadin IgG 20-30 AU 20-30 AU = weak positive >30= positive tTG IgA 20-30 EU (same as above, weak pos) EMA Titer = or > 1:5 Interp Test: CELN RESUTS INTERPRETATION: The results do not support a diagnosis of Celiac disease. Celiac disease is very unlikely in a patient with an adequate IgA levels and on a gluten containing diet. Development of Celiac disease in the future cannot be ruled out Tests performed by: SBMF - Central Lab, South Bend, IN 46601 CLIA#i5D0357169 ----- From that they were just like, oh, you don't have Celiac, and are moving to ruling out other things... From even just me looking at it, aren't the second set of numbers very suspect????? I don't know what those are compared to the top one they are basing things from it seems. Any help reading this is GREATLY appreciated... and also what the heck to say to my doctor about it to get him to listen to me.
  15. Okay, finally made some progress... My suspect of celiac seems to be becoming a lot more concrete to me, and well, seemly only me (compared with my doctors) Yesterday I sat down at my parents with the phone (they have free long distance), a pad of paper, and any numbers I had so far and started calling. Spent three hours making calls and on hold and redirected and ... yeah. BUT, I put my head down and just ran bull headed till I got some results. I think one receptionist was glad to finally not talk to me anymore (and I felt the same) but this is my health and body. Okay, found out from the nurse, drilling for details about the celiac panel test they did, and got this info out of her - the test they sent to a lab in South Bend, Indiana (about 2 hours from where I live) and she said not the one in California (which would that be??). I realized too, that I was getting the start of a very bad cold when they took the blood for it, would that have signaled my immunity is depressed and the results would have been low? - I've been getting colds/flu very easily for a bit. Well, I then found out the tests that 'showed I don't have celiac', actually came back as mostly weak positives. From how finiky most here say the tests are, me getting weak positives from a not that great lab... to me would be pretty telling. Not to them though. *sigh* Since the levels were not over the level for a 'high' reading, the lab or whoever 'they' is, didn't test further. From there I got to deal with getting set up for the colonoscopy. Nurse said they send all my info and tests results to the gastro the day before, and my cell phone number, and they are going to want to get me set up to get in and gave me the number to call. I had a missed call on my cell phone from the city where the office is and mentioned that, and she said that was probably them. So I call the number she gave me, talk to this person, then that person, finally got to the gastro office and got to deal with the receptionist for 45mins..... She said they didn't have any of my information, nothing from my doctor, never had gotten anything from that doctor, then said she can call my doctor tomorrow and get back to me later in the week, that's all she can do. ... I call back - is there somebody else I can talk to? - mmm, no, the scheduling person is on the phone, I can call you back when she gets off - okay, thank you. - hang up and realize she didn't even get my number to call back. - look up the number on my cell and call that number and get her directly...... I tell her, you have to have my info, because I just called the number that was on my phone from this morning, and you answered. - Was there a message left for you? - my mailbox isn't set up, it's an emergency pay as you go. - let me see if the schedualing person is free now. I get the other women and I give her my name, and she goes, - Oh, I was hoping you would call! Shoot me. Anyway, I pushed that I wasn't doing that great, and sooner is better, and ended up getting my colonoscopy next Tuesday, one week out. I think that's an accomplishment. I am also suppose to meet with the doctor, guessing then before the procedure, to go over everything with him, and I am hoping I can convince him to do the other test, can't think of the name right now, and biopsy soon after the colonoscopy. I think I am convinced it is celiac, and could just do the diet and say screw the doctors, but I think I need to know if there is anything else going on secondary and if there are any other food problems - I think egg, always had problems with eggs. Oh, the exact results of the celiac panel are in the mail to me, I would go and get them myself, but I don't have a car and they are in the next county. I have no idea how I am going to start the diet though after the tests.... I don't have any money or income to buy all new food.... Are there other things I should be doing, pushing for? A new blood panel sent to a good place?