Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 Sheryl, When I first had my depth perception problem I had read somewhere that we learn this when we learn to crawl-so I crawled and crawled and crawled-It must have helped some although in driving since I am aware of my problem I never wait until the last minute to stop-it seems that when movement is fast it still doesn't work. In the beginning if I was walking in a store and the floor gradually sloped or changed without a step, it would immediately make my stomach flip flop. Watched a movie of my son's wedding and reception last nite, I sat and cried as there I was walking normal-I'll get there yet! Coleen Sheryl wrote: > Coleen, > I can't speak for Roe but I have dept perception problems. I believe it > goes along with the neurological problems > Sheryl > Re: [ ] Hello > > > nne, > > My, your symptom of the head with jello inside and the brain moving > around. I had this right after a closed head injury, so now hmmmm... I used > to > > say my brain had to much juice around it and I really thought I could feel > it. One is not supposed to feel one's own brain, are they. It was before > > August of 1985 that I got sick and this strange feeling came on after the > closed head injury in Feb of 1986. I have read that big stressful > > happenings can bring on many Lyme symptoms all at once and I have for the > 2 yrs that I have learned I have Lyme wondered because the symptoms I had > > immediately after the head injury were the same as you are having. My > seizures though were just a smell thing, I would smell a smouldering garbage > > file, I checked my house and outdoors everytime but the only thing, > including medication, to make them go away was to just lay down and quit > doing > > what I was doing. Weird thing as I could fill a hanky with perfume and > still smell this smell through the perfume. > > I have found over these 15 undiagnoised years, 17 yrs now that symptoms > stay about 6 months and then most of them leave, only to be replaced by > > another one. > > I did go to a neurophycoligist(its not spelled correctly) for a year for > individual and groups therapy sessions on short term memory, probably some > > other things too but then who can remember. Of course too, these symptoms > overlap as to when they come and go. I have learned with Lyme if you don't > > use it you will loose it so I have always stayed very active in the brain > part. I just came off a very bad year, had the fog so bad so not quite > > sure what all I did do but now that the fog has " lifted " I really realize > how much of the brain workings are troubling me-I can't imagine how bad I > > would be had I not continued to keep it active.I do have one advantage, I > do or am working on my family genealogy. THAT keeps the brain active to > > say the least. I am able to find info on family but I do have problems > keeping members straight when filling out family sheets-to be honest I am > > putting most of them off hoping since I am improving so much I will get > better in the brain part and not really mess them up good like I know I can. > > > > Just wanted you to know that's the first time I ever heard of someone > else's brain feeling like mine did so many years ago. Have you ever had a > > depth perception problem? > > Coleen > > > > nne wrote: > > > > > Sheryl, same thing with me! I have what may be irreversible damage to > > > certain parts of my brain. I can not learn new things, its so > frustrating > > > and I am on anti seizure medication. today I am having one of my jello > > > brain days. its like my brain is loose inside my head, if I move my head > to > > > the left, my brain takes time to come with it. geeze that makes no > sense. > > > if I told you the rest of my neurological symptoms, I might be put in a > > > rubber room! ask your hubby for his patience. > > > > > > roe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Pepi and All, I think these problems are something we can all relate to at one time or another. I find many things to be cyclic. My depth perception problems, reading and writing, memory, all were much worse a few years ago, earlier in my treatment. I've seen a lot of improvement, but it still cycles down a bit at times. Pepi, I'm sorry you're having driving problems now. Especially since you have to drive so far to see the doc. That's gotta be scary. I can say that for about 3 years I was terrified of driving, mainly because of my earlier seizure activity. It's better for me now, though I don't have to drive much, for other reasons. A lot of my problem was driving a stick shift when I shouldn't have been. That required much more brain activity and musular strength and overall coordination than was smart to do. Being forced to get a different car with an automatic " solved " a lot of what I perceived to be " driving " problems. Now it's much easier for me to drive. Also, visibility in a vehicle makes a lot of difference.We take so much for granted about our former abilities. However, you have a much " bigger " problem with that big truck. I don't blame you for feeling like it is sliding out from under you. I'd be a little scared, too, of driving it. I know what you mean about weighin 3 tons. I describe it as " body heaviness. " Like you just can't propel your body forward, or it takes all your energy!. And that feeling of collapse! Gotta sit down, lay down or your gonna FALL down. No control over these dern muscles. Just won't do what you want them to do anymore. Very frustrating! I still keep lists of everything! I'd forget my head if it wasn't fastened on, as mother used to say! I think that has become habit, 'cause as soon as I rely on memory, then I'll forget something important. and I have learned to double-check each other. Sometimes that doesn't work either and we both forget! From: " Rodney & " <rod@...> Subject: Re: Hello but I have dept perception problems. I believe it > goes along with the neurological problems > > My, your symptom of the head with jello inside and the brain moving > around. <snip> When driving, which I try to not do now, I feel like the tail of my truck is sliding out, guess thats a vertigo thing? Memory is all but shot, have lists all over to keep me in line. hubby took me to the store the other day and I left my list at home, I went in for one thing and dangit if I got a load of stuff and that one thing is still at the store LOL. Anyone get the feeling of weighing a ton all the time? I know I didnt say that right, I have mind-numbing fatigue, the kind that tells you to go lay down, *right now* when I get that tired I feel like my arms and legs are weighed down. God I hate this disease. Pepi T.O.I.L. for Lyme! T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor for Lyme literacy *Our websites* http://www.angelfire.com/tx3/RoseWriter or http://www.angelfire.com/biz/romarkaraoke/james.html --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Dear , Unfortunately, these hurtful comments are common because people don't/can't understand. Just remember that stupid people say stupid things. You can't control them anymore than you can control having this disease. It's easy to say " Don't worry about it " but that's about all you can do. You need to keep on doing the things that make you feel better and help you cope with this disease. You can't hide inside or hide from the cruelty of others! You have us, and we understand and care. You're not alone, by any means. (I don't mean to imply that it is easy to deal with, because it isn't.) Love ya lots, Rose From: michelle cervera <cuteangel54321@...> Subject: Re: Hello im sick of people i just went outside to lie down to relax and my neigbors said get ajob i said i cant work they said yes you can imstarting to hate alot of people i lost my freiends from this and my family i cant take this stupid remarks. T.O.I.L. for Lyme! T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor for Lyme literacy *Our websites* http://www.angelfire.com/tx3/RoseWriter or http://www.angelfire.com/biz/romarkaraoke/james.html --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Dear a, I'm so sorry your son hurt you that way! Insensitivy is so very hard to deal with at any time. Having a family member (children especially) be so insensitive is the hardest of all to bear, especially when you are trying to do your best to help them. Only time can help develop a " tougher " skin, but these wounds still penetrate, no matter how hard we try or how much we smile through our tears. That's why I'm glad we at least have each other. Might not replace the others in our lives who ignore us or mistreat us, might not be enough, but it's better than nothing. I wish I could offer more, wish we were closer together. Hang in there! Love ya, Rose =====> > Dear Rose & all, > > Hi, what you say is true, totally true, but I'm in the same position that > is in. > Even tho I know that I can only control myself & my action & words, ..... > still the cruel actions & words of others hurt me so much, often like my > heart being pierced. I'm just so emotional & sensitive. I try to be so > helpful to others, it would never occur to me to hurt anyone in any way, but > there are hordes of others who think only of themselves & who are mean, > spiteful & selfish to the core. > > This may not be exactly related, but last week I went shopping for a lamp & > small area rug that my son said he needed for his new college > dormitiory room. I found him a very nice, simple, solid navy-blue lamp with > a little style, hexagonal, small Oriental type base, but very discrete, you'd > notice it only if you looked closely. It was inexpensive, and I thought he'd > be THRILLED to have it. I displayed it, was eagerly awaiting the happy, > excited look on his face when he walked in the door after school. I was > expecting a warm hug. I told him how I had been thinking of him & trying to > help him prepare for college & would go with him any time to shop for the > lampshade of his choice. > Instead, he yelled at me for at least 15 minutes about how dare I get it > without consulting him, how it was too large, how he had no interest in > shopping for either lamps or lampshades, how it was too masculine, not the > right anything, & just because I interfered in his life by trying to > " pretend " to help him, he would rather smash it than use it. > > He had me in tears for hours. All I could say thru my tears was that the > lamp was unimportant, it cost less than $10, he could give it away to someone > who would love it & want to use it, but that my feelings were more important & > that I truly love him & was trying to help him. > > I don't understand why it hurts me so badly, as do so many other things. > Sometimes I can't understand how there could be any more tears left inside > me, I hurt so badly. His father, my ex, treats me much worse, never forgets > to remind me that I'm a total hypocrite & hypochondriac, that there could not > be anything wrong with me, you all know that scene, because I " look healthy. " > > I'm on an anti-depressant now & it is helping a bit, but my heart still feels > so broken & I feel so hurt deep down. I wish I had a lover or supportive > spouse, but am all alone. Knowing how all my life I've wanted to help others > & have always done so, I need to find out how to connect with others who feel > the same way, who can give & care. The support here is wonderful, but it > isn't enuf. > Can anyone offer other suggestions for me & the others here that are in the > same position? How can we get " tougher skins? " > > Yes, I am in therapy, in case you are wondering. > > Love to all, > a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 , I don't know what your other symptoms are but I do know that I have Lyme. Mine has gone to a neurological state and believe me I truely believe at times that I have lost my ever lovin mind. Have you seen a neurologist and had an MRI done. My had gone to the state that recently I was hospitalized for an infection on my brain. Trust me your not alone. My husband God love him, sometimes thinks I have gone by-polar, and at times I think he's gonna lock me up in a padded room. Have you had a Western Blot done? That along with making a list of your symptoms would be the first step. Take it easy on your self. What helps me is that I have learned to laugh at my brain fog, if not I would truely go nuts. Sheryl Re: [ ] Hello > > > > > > > nne, > > > My, your symptom of the head with jello inside and > > the brain moving > > around. I had this right after a closed head injury, > > so now hmmmm... I used > > to > > > say my brain had to much juice around it and I > > really thought I could feel > > it. One is not supposed to feel one's own brain, are > > they. It was before > > > August of 1985 that I got sick and this strange > > feeling came on after the > > closed head injury in Feb of 1986. I have read that > > big stressful > > > happenings can bring on many Lyme symptoms all at > > once and I have for the > > 2 yrs that I have learned I have Lyme wondered > > because the symptoms I had > > > immediately after the head injury were the same as > > you are having. My > > seizures though were just a smell thing, I would > > smell a smouldering garbage > > > file, I checked my house and outdoors everytime > > but the only thing, > > including medication, to make them go away was to > > just lay down and quit > > doing > > > what I was doing. Weird thing as I could fill a > > hanky with perfume and > > still smell this smell through the perfume. > > > I have found over these 15 undiagnoised years, 17 > > yrs now that symptoms > > stay about 6 months and then most of them leave, > > only to be replaced by > > > another one. > > > I did go to a neurophycoligist(its not spelled > > correctly) for a year for > > individual and groups therapy sessions on short term > > memory, probably some > > > other things too but then who can remember. Of > > course too, these symptoms > > overlap as to when they come and go. I have learned > > with Lyme if you don't > > > use it you will loose it so I have always stayed > > very active in the brain > > part. I just came off a very bad year, had the fog > > so bad so not quite > > > sure what all I did do but now that the fog has > > " lifted " I really realize > > how much of the brain workings are troubling me-I > > can't imagine how bad I > > > would be had I not continued to keep it active.I > > do have one advantage, I > > do or am working on my family genealogy. THAT keeps > > the brain active to > > > say the least. I am able to find info on family > > but I do have problems > > keeping members straight when filling out family > > sheets-to be honest I am > > > putting most of them off hoping since I am > > improving so much I will get > > better in the brain part and not really mess them up > > good like I know I can. > > > > > > Just wanted you to know that's the first time I > > ever heard of someone > > else's brain feeling like mine did so many years > > ago. Have you ever had a > > > depth perception problem? > > > Coleen > > > > > > nne wrote: > > > > > > > Sheryl, same thing with me! I have what may be > > irreversible damage to > > > > certain parts of my brain. I can not learn new > > things, its so > > frustrating > > > > and I am on anti seizure medication. today I am > > having one of my jello > > > > brain days. its like my brain is loose inside my > > head, if I move my head > > to > > > > the left, my brain takes time to come with it. > > geeze that makes no > > sense. > > > > if I told you the rest of my neurological > > symptoms, I might be put in a > > > > rubber room! ask your hubby for his patience. > > > > > > > > roe > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > Welcome to > > > > > > > > Easy Reference: > > > > Send a blank email message to: > > > > > > > > -Unsubscribe - > > Unsubscribe from the list > > > > -Digest - Switch your > > subscription to a digest > > format > > > > -Normal - Switch your > > subscription to normal > > > > > > > > Please send messages not related to Lyme disease > > (this includes humor > > and information about other diseases) to > > -Offtopic > > > > > > > > The archives can be accessed at > > > > > > > > > > The chat room is always open! > > > > /chat > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 , Your not alone. I don't know what your other symptoms are but my disease has gone neurological. Don't worry what other idiots say or think. Have you had a Western Blot done? If not that is the first step. Sometimes I think I have lost my ever lovin mind, and that my family is going to have me locked up in a padded room. Find out what is going on first. Alos I have learned to laugh at my brain fog, and to appologize when I loose it toward my family, those that understand anyhow. My brother and sister-in-law won't come by my house or bring my nephews by anymore, because thay think I'm contagious. Let stupid people that don't want to learn alone you don't need that right now and consentrate on getting better. Look at me I can't spell anymore and I'm a journalism major who has worked on several newspapers. I can't sweat the small stuff right now, I need to get healthy first. Sheryl Re: [ ] Hello > > > > > > > nne, > > > My, your symptom of the head with jello inside and > > the brain moving > > around. I had this right after a closed head injury, > > so now hmmmm... I used > > to > > > say my brain had to much juice around it and I > > really thought I could feel > > it. One is not supposed to feel one's own brain, are > > they. It was before > > > August of 1985 that I got sick and this strange > > feeling came on after the > > closed head injury in Feb of 1986. I have read that > > big stressful > > > happenings can bring on many Lyme symptoms all at > > once and I have for the > > 2 yrs that I have learned I have Lyme wondered > > because the symptoms I had > > > immediately after the head injury were the same as > > you are having. My > > seizures though were just a smell thing, I would > > smell a smouldering garbage > > > file, I checked my house and outdoors everytime > > but the only thing, > > including medication, to make them go away was to > > just lay down and quit > > doing > > > what I was doing. Weird thing as I could fill a > > hanky with perfume and > > still smell this smell through the perfume. > > > I have found over these 15 undiagnoised years, 17 > > yrs now that symptoms > > stay about 6 months and then most of them leave, > > only to be replaced by > > > another one. > > > I did go to a neurophycoligist(its not spelled > > correctly) for a year for > > individual and groups therapy sessions on short term > > memory, probably some > > > other things too but then who can remember. Of > > course too, these symptoms > > overlap as to when they come and go. I have learned > > with Lyme if you don't > > > use it you will loose it so I have always stayed > > very active in the brain > > part. I just came off a very bad year, had the fog > > so bad so not quite > > > sure what all I did do but now that the fog has > > " lifted " I really realize > > how much of the brain workings are troubling me-I > > can't imagine how bad I > > > would be had I not continued to keep it active.I > > do have one advantage, I > > do or am working on my family genealogy. THAT keeps > > the brain active to > > > say the least. I am able to find info on family > > but I do have problems > > keeping members straight when filling out family > > sheets-to be honest I am > > > putting most of them off hoping since I am > > improving so much I will get > > better in the brain part and not really mess them up > > good like I know I can. > > > > > > Just wanted you to know that's the first time I > > ever heard of someone > > else's brain feeling like mine did so many years > > ago. Have you ever had a > > > depth perception problem? > > > Coleen > > > > > > nne wrote: > > > > > > > Sheryl, same thing with me! I have what may be > > irreversible damage to > > > > certain parts of my brain. I can not learn new > > things, its so > > frustrating > > > > and I am on anti seizure medication. today I am > > having one of my jello > > > > brain days. its like my brain is loose inside my > > head, if I move my head > > to > > > > the left, my brain takes time to come with it. > > geeze that makes no > > sense. > > > > if I told you the rest of my neurological > > symptoms, I might be put in a > > > > rubber room! ask your hubby for his patience. > > > > > > > > roe > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > Welcome to > > > > > > > > Easy Reference: > > > > Send a blank email message to: > > > > > > > > -Unsubscribe - > > Unsubscribe from the list > > > > -Digest - Switch your > > subscription to a digest > > format > > > > -Normal - Switch your > > subscription to normal > > > > > > > > Please send messages not related to Lyme disease > > (this includes humor > > and information about other diseases) to > > -Offtopic > > > > > > > > The archives can be accessed at > > > > > > > > > > The chat room is always open! > > > > /chat > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 , I have never been lock up in a mental word thank goodness. But I understand the nutso mom think I haven't spoken to mine in years and had to go see a therapist for a while who says I'm diplacing. Whatever that means. Get checked then get copies of your test results, show them to her. Sheryl Re: [ ] Hello > Well, my family has had me locked up in mental wards many times since > I was a teenager, doctors gave a different diagnosis every time. > Mental wards are no fun, I was chased by scary male patients in the > middle of the night, one time I had my period and asked for some > tampons - the nurses just laughed and thought it was some of my > insanity - a few days later they gave me a cup and demanded a urine > sample, so I gave them a cup of blood ad urine and pus from an > infection (sorry if that's too graphic), well the next day at least > they brought me some tampons. Oh memories. All my life I was never > allowed to be sick, my mother would get angry at me. Consequently, > she never listened to or believed I had any real physical symptoms, > even when I got jaundiced and couldn't stand up for two months. That > is a major reason why I hadn't gotten a proper diagnosis yet. I > have done treatments for yeast and for parasites, each time the herbs > and protocols helped but had no lasting effect when I stopped them. > > > > >, > > I have had Lyme for going on two years in and out of " remission " , if there > >is a cure for late stage Lyme I would also like to know. I hit the > >neurological stage at the end of last year, every since I have to take > >seizure medication and my brain lives in a fog. Yesterday I was such a > >basket case my husband thought I was going by-polar. Good luck. sheryl > > > > > >> Hi, > >> > >> I am new here. I have been sick & miserable for 20 years, now they > >> seem to think it is Lyme. When I was reading about Lyme on the web > >> today, it all fits my picture very well, I never knew Lyme could > >> cause such diverse problems as my frequent baldder infections - also > >> I had a tick when I was 12, I never took it off because I didn't know > >> what it was, it was shortly after that I started getting sick. At > >> the time the Dr. asked ma about my sex life, he seemed to think I had > >> an STD (at 12!! jeepers) or mono. > >> > >> I will find out more in a few months when I get to speak with some > >doctors. > >> > >> So, what is the cure for late stage Lyme? > >> > >> Is there a cure that doesn't involve allopathic drugs? > >> > >> Thank you, > >> > > > > >> > > Welcome to > > Easy Reference: > Send a blank email message to: > > -Unsubscribe - Unsubscribe from the list > -Digest - Switch your subscription to a digest format > -Normal - Switch your subscription to normal > > Please send messages not related to Lyme disease (this includes humor and information about other diseases) to -Offtopic > > The archives can be accessed at > > The chat room is always open! > /chat > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Roe' I'm not sure what happened but I didn't sent that e-mail. Sheryl RE: [ ] Hello > im sick of people i just went outside to lie down to > relax and my neigbors said get ajob i said i cant work > they said yes you can imstarting to hate alot of > people i lost my freiends from this and my family i > cant take this stupid remarks. > --- Sheryl > > holly molly Sheryl, where do you live! what idiots. they are just ignorant > and don't understand. our disability is invisible and people will judge us. > don't take it personally, its just the way some people are. i have SSD and > LTD, and i would give it up in a minute to have my brain back and a job. but > many of my X friends think i am happy to be on disability. > > roe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Coleen, Have faith. My faith in the Lord is the main thing that gets me out of the bed, it sure ain't energy. Sheryl Re: [ ] Hello > > > > > nne, > > > My, your symptom of the head with jello inside and the brain moving > > around. I had this right after a closed head injury, so now hmmmm... I used > > to > > > say my brain had to much juice around it and I really thought I could feel > > it. One is not supposed to feel one's own brain, are they. It was before > > > August of 1985 that I got sick and this strange feeling came on after the > > closed head injury in Feb of 1986. I have read that big stressful > > > happenings can bring on many Lyme symptoms all at once and I have for the > > 2 yrs that I have learned I have Lyme wondered because the symptoms I had > > > immediately after the head injury were the same as you are having. My > > seizures though were just a smell thing, I would smell a smouldering garbage > > > file, I checked my house and outdoors everytime but the only thing, > > including medication, to make them go away was to just lay down and quit > > doing > > > what I was doing. Weird thing as I could fill a hanky with perfume and > > still smell this smell through the perfume. > > > I have found over these 15 undiagnoised years, 17 yrs now that symptoms > > stay about 6 months and then most of them leave, only to be replaced by > > > another one. > > > I did go to a neurophycoligist(its not spelled correctly) for a year for > > individual and groups therapy sessions on short term memory, probably some > > > other things too but then who can remember. Of course too, these symptoms > > overlap as to when they come and go. I have learned with Lyme if you don't > > > use it you will loose it so I have always stayed very active in the brain > > part. I just came off a very bad year, had the fog so bad so not quite > > > sure what all I did do but now that the fog has " lifted " I really realize > > how much of the brain workings are troubling me-I can't imagine how bad I > > > would be had I not continued to keep it active.I do have one advantage, I > > do or am working on my family genealogy. THAT keeps the brain active to > > > say the least. I am able to find info on family but I do have problems > > keeping members straight when filling out family sheets-to be honest I am > > > putting most of them off hoping since I am improving so much I will get > > better in the brain part and not really mess them up good like I know I can. > > > > > > Just wanted you to know that's the first time I ever heard of someone > > else's brain feeling like mine did so many years ago. Have you ever had a > > > depth perception problem? > > > Coleen > > > > > > nne wrote: > > > > > > > Sheryl, same thing with me! I have what may be irreversible damage to > > > > certain parts of my brain. I can not learn new things, its so > > frustrating > > > > and I am on anti seizure medication. today I am having one of my jello > > > > brain days. its like my brain is loose inside my head, if I move my head > > to > > > > the left, my brain takes time to come with it. geeze that makes no > > sense. > > > > if I told you the rest of my neurological symptoms, I might be put in a > > > > rubber room! ask your hubby for his patience. > > > > > > > > roe > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 im going to see a lyme doc on june 18th i hope he can help me. --- Sheryl <slmitch1@...> wrote: > , > Your not alone. I don't know what your other > symptoms are but my disease > has gone neurological. Don't worry what other idiots > say or think. Have you > had a Western Blot done? If not that is the first > step. Sometimes I think I > have lost my ever lovin mind, and that my family is > going to have me locked > up in a padded room. Find out what is going on > first. Alos I have learned to > laugh at my brain fog, and to appologize when I > loose it toward my family, > those that understand anyhow. My brother and > sister-in-law won't come by my > house or bring my nephews by anymore, because thay > think I'm contagious. Let > stupid people that don't want to learn alone you > don't need that right now > and consentrate on getting better. Look at me I > can't spell anymore and I'm > a journalism major who has worked on several > newspapers. I can't sweat the > small stuff right now, I need to get healthy first. > Sheryl > Re: [ ] Hello > > > > > > > > > > nne, > > > > My, your symptom of the head with jello inside > and > > > the brain moving > > > around. I had this right after a closed head > injury, > > > so now hmmmm... I used > > > to > > > > say my brain had to much juice around it and I > > > really thought I could feel > > > it. One is not supposed to feel one's own brain, > are > > > they. It was before > > > > August of 1985 that I got sick and this > strange > > > feeling came on after the > > > closed head injury in Feb of 1986. I have read > that > > > big stressful > > > > happenings can bring on many Lyme symptoms all > at > > > once and I have for the > > > 2 yrs that I have learned I have Lyme wondered > > > because the symptoms I had > > > > immediately after the head injury were the > same as > > > you are having. My > > > seizures though were just a smell thing, I would > > > smell a smouldering garbage > > > > file, I checked my house and outdoors > everytime > > > but the only thing, > > > including medication, to make them go away was > to > > > just lay down and quit > > > doing > > > > what I was doing. Weird thing as I could fill > a > > > hanky with perfume and > > > still smell this smell through the perfume. > > > > I have found over these 15 undiagnoised years, > 17 > > > yrs now that symptoms > > > stay about 6 months and then most of them leave, > > > only to be replaced by > > > > another one. > > > > I did go to a neurophycoligist(its not spelled > > > correctly) for a year for > > > individual and groups therapy sessions on short > term > > > memory, probably some > > > > other things too but then who can remember. Of > > > course too, these symptoms > > > overlap as to when they come and go. I have > learned > > > with Lyme if you don't > > > > use it you will loose it so I have always > stayed > > > very active in the brain > > > part. I just came off a very bad year, had the > fog > > > so bad so not quite > > > > sure what all I did do but now that the fog > has > > > " lifted " I really realize > > > how much of the brain workings are troubling > me-I > > > can't imagine how bad I > > > > would be had I not continued to keep it > active.I > > > do have one advantage, I > > > do or am working on my family genealogy. THAT > keeps > > > the brain active to > > > > say the least. I am able to find info on > family > > > but I do have problems > > > keeping members straight when filling out family > > > sheets-to be honest I am > > > > putting most of them off hoping since I am > > > improving so much I will get > > > better in the brain part and not really mess > them up > > > good like I know I can. > > > > > > > > Just wanted you to know that's the first time > I > > > ever heard of someone > > > else's brain feeling like mine did so many years > > > ago. Have you ever had a > > > > depth perception problem? > > > > Coleen > > > > > > > > nne wrote: > > > > > > > > > Sheryl, same thing with me! I have what may > be > > > irreversible damage to > > > > > certain parts of my brain. I can not learn > new > > > things, its so > > > frustrating > > > > > and I am on anti seizure medication. today > I am > > > having one of my jello > > > > > brain days. its like my brain is loose > inside my > > > head, if I move my head > > > to > > > > > the left, my brain takes time to come with > it. > > > geeze that makes no > > > sense. > > > > > if I told you the rest of my neurological > > > symptoms, I might be put in a > > > > > rubber room! ask your hubby for his > patience. > > > > > > > > > > roe > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > Welcome to > > > > > > > > > > Easy Reference: > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 im going to see a lyme doc on june 18th i hope he can help me. --- Sheryl <slmitch1@...> wrote: > , > Your not alone. I don't know what your other > symptoms are but my disease > has gone neurological. Don't worry what other idiots > say or think. Have you > had a Western Blot done? If not that is the first > step. Sometimes I think I > have lost my ever lovin mind, and that my family is > going to have me locked > up in a padded room. Find out what is going on > first. Alos I have learned to > laugh at my brain fog, and to appologize when I > loose it toward my family, > those that understand anyhow. My brother and > sister-in-law won't come by my > house or bring my nephews by anymore, because thay > think I'm contagious. Let > stupid people that don't want to learn alone you > don't need that right now > and consentrate on getting better. Look at me I > can't spell anymore and I'm > a journalism major who has worked on several > newspapers. I can't sweat the > small stuff right now, I need to get healthy first. > Sheryl > Re: [ ] Hello > > > > > > > > > > nne, > > > > My, your symptom of the head with jello inside > and > > > the brain moving > > > around. I had this right after a closed head > injury, > > > so now hmmmm... I used > > > to > > > > say my brain had to much juice around it and I > > > really thought I could feel > > > it. One is not supposed to feel one's own brain, > are > > > they. It was before > > > > August of 1985 that I got sick and this > strange > > > feeling came on after the > > > closed head injury in Feb of 1986. I have read > that > > > big stressful > > > > happenings can bring on many Lyme symptoms all > at > > > once and I have for the > > > 2 yrs that I have learned I have Lyme wondered > > > because the symptoms I had > > > > immediately after the head injury were the > same as > > > you are having. My > > > seizures though were just a smell thing, I would > > > smell a smouldering garbage > > > > file, I checked my house and outdoors > everytime > > > but the only thing, > > > including medication, to make them go away was > to > > > just lay down and quit > > > doing > > > > what I was doing. Weird thing as I could fill > a > > > hanky with perfume and > > > still smell this smell through the perfume. > > > > I have found over these 15 undiagnoised years, > 17 > > > yrs now that symptoms > > > stay about 6 months and then most of them leave, > > > only to be replaced by > > > > another one. > > > > I did go to a neurophycoligist(its not spelled > > > correctly) for a year for > > > individual and groups therapy sessions on short > term > > > memory, probably some > > > > other things too but then who can remember. Of > > > course too, these symptoms > > > overlap as to when they come and go. I have > learned > > > with Lyme if you don't > > > > use it you will loose it so I have always > stayed > > > very active in the brain > > > part. I just came off a very bad year, had the > fog > > > so bad so not quite > > > > sure what all I did do but now that the fog > has > > > " lifted " I really realize > > > how much of the brain workings are troubling > me-I > > > can't imagine how bad I > > > > would be had I not continued to keep it > active.I > > > do have one advantage, I > > > do or am working on my family genealogy. THAT > keeps > > > the brain active to > > > > say the least. I am able to find info on > family > > > but I do have problems > > > keeping members straight when filling out family > > > sheets-to be honest I am > > > > putting most of them off hoping since I am > > > improving so much I will get > > > better in the brain part and not really mess > them up > > > good like I know I can. > > > > > > > > Just wanted you to know that's the first time > I > > > ever heard of someone > > > else's brain feeling like mine did so many years > > > ago. Have you ever had a > > > > depth perception problem? > > > > Coleen > > > > > > > > nne wrote: > > > > > > > > > Sheryl, same thing with me! I have what may > be > > > irreversible damage to > > > > > certain parts of my brain. I can not learn > new > > > things, its so > > > frustrating > > > > > and I am on anti seizure medication. today > I am > > > having one of my jello > > > > > brain days. its like my brain is loose > inside my > > > head, if I move my head > > > to > > > > > the left, my brain takes time to come with > it. > > > geeze that makes no > > > sense. > > > > > if I told you the rest of my neurological > > > symptoms, I might be put in a > > > > > rubber room! ask your hubby for his > patience. > > > > > > > > > > roe > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > Welcome to > > > > > > > > > > Easy Reference: > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 In a message dated 6/10/2001 11:48:33 AM Eastern Daylight Time, toil_for_lyme@... writes: > Only time can help develop a " tougher " skin, but these wounds still > penetrate, no matter how hard we try or how much we smile through our > tears. That's why I'm glad we at least have each other. Might not > replace the others in our lives who ignore us or mistreat us, might > not be enough, but it's better than nothing. I wish I could offer > more, wish we were closer together Dear Rose, Thank you ever-so-much for your kind words. I'm 53 now, so when will I develop a thicker skin??? Actually, however, I do believe my skin is figuratively a bit thicker than it used to be, so there is hope. And yes, we do have each other, and yes, also I wish we were closer together. Love & hugs, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 a, I would guess that after your son has been away from home for awhile, that your relationship will slowly improve. College is a helpful maturity booster, and the distance between you will help erase the daily pressures between you as well. Have hope and be strong. Jenni > In a message dated 6/10/2001 3:47:24 PM Eastern Daylight Time, > roe325@s... writes: > > > > Anyway, a, your son may have other things on his mind other than the > > lamp that made him lash out at you. he may be very worried about you and not > > know how to express it. I know this will not be easy with a teen, but its > > time to have a talk with him. its not easy having a sick parent. he may > > need help with depression also. > > > > roe > > > > > > Dear Roe, > > Thanks so much for your kind words & thoughts. > It has never occurred to me to smack my son. > I've been battered all my life & abhor violence. It teaches nothing except > fear & maybe hatred too. > > Roe, my son had Lyme, & I got him treated right away, which he resented, the > ungrateful brat!!! But at least the treatment seems to have worked for him. > Also, I took him for many years of therapy, but he resented that too, refuses > to go anymore. The best thing for him is to get away to go to college & > start a new life for himself. I just wish we could have been closer, as I > love him so much. But he needs to grow up. > > Much love, > a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 It kills me that people can't be more understanding ( & educated!!) People can be so cruel. I don't have any support from my family--they just can't understand ( or don't want to). I think in my life the only ones who do understand what 'we' live with, are the ones living with me!...my boyfriend & our children. As for 'outside' opinions...ignore them...they'll never understand until they get lyme. You could always hand them a pamphlet...help to educate them, so next time they'll be more prepared before they run their mouths! Kris --- LymeDizzy@... wrote: > In a message dated 6/9/2001 6:17:39 PM Eastern > Daylight Time, > roe325@... writes: > > > > im sick of people i just went outside to lie down > to > > relax and my neigbors said get ajob i said i cant > work > > they said yes you can imstarting to hate alot of > > people i lost my freiends from this and my family > i > > cant take this stupid remarks. > > --- Sheryl > > > > > > Next time he or she says get a job tell them to get > a life this way they > don't have to sit around and live through yours > *beams sarcasticly* > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 let us know what he says. sheryl Re: [ ] Hello > > > > > > > > > > > > > nne, > > > > > My, your symptom of the head with jello inside > > and > > > > the brain moving > > > > around. I had this right after a closed head > > injury, > > > > so now hmmmm... I used > > > > to > > > > > say my brain had to much juice around it and I > > > > really thought I could feel > > > > it. One is not supposed to feel one's own brain, > > are > > > > they. It was before > > > > > August of 1985 that I got sick and this > > strange > > > > feeling came on after the > > > > closed head injury in Feb of 1986. I have read > > that > > > > big stressful > > > > > happenings can bring on many Lyme symptoms all > > at > > > > once and I have for the > > > > 2 yrs that I have learned I have Lyme wondered > > > > because the symptoms I had > > > > > immediately after the head injury were the > > same as > > > > you are having. My > > > > seizures though were just a smell thing, I would > > > > smell a smouldering garbage > > > > > file, I checked my house and outdoors > > everytime > > > > but the only thing, > > > > including medication, to make them go away was > > to > > > > just lay down and quit > > > > doing > > > > > what I was doing. Weird thing as I could fill > > a > > > > hanky with perfume and > > > > still smell this smell through the perfume. > > > > > I have found over these 15 undiagnoised years, > > 17 > > > > yrs now that symptoms > > > > stay about 6 months and then most of them leave, > > > > only to be replaced by > > > > > another one. > > > > > I did go to a neurophycoligist(its not spelled > > > > correctly) for a year for > > > > individual and groups therapy sessions on short > > term > > > > memory, probably some > > > > > other things too but then who can remember. Of > > > > course too, these symptoms > > > > overlap as to when they come and go. I have > > learned > > > > with Lyme if you don't > > > > > use it you will loose it so I have always > > stayed > > > > very active in the brain > > > > part. I just came off a very bad year, had the > > fog > > > > so bad so not quite > > > > > sure what all I did do but now that the fog > > has > > > > " lifted " I really realize > > > > how much of the brain workings are troubling > > me-I > > > > can't imagine how bad I > > > > > would be had I not continued to keep it > > active.I > > > > do have one advantage, I > > > > do or am working on my family genealogy. THAT > > keeps > > > > the brain active to > > > > > say the least. I am able to find info on > > family > > > > but I do have problems > > > > keeping members straight when filling out family > > > > sheets-to be honest I am > > > > > putting most of them off hoping since I am > > > > improving so much I will get > > > > better in the brain part and not really mess > > them up > > > > good like I know I can. > > > > > > > > > > Just wanted you to know that's the first time > > I > > > > ever heard of someone > > > > else's brain feeling like mine did so many years > > > > ago. Have you ever had a > > > > > depth perception problem? > > > > > Coleen > > > > > > > > > > nne wrote: > > > > > > > > > > > Sheryl, same thing with me! I have what may > > be > > > > irreversible damage to > > > > > > certain parts of my brain. I can not learn > > new > > > > things, its so > > > > frustrating > > > > > > and I am on anti seizure medication. today > > I am > > > > having one of my jello > > > > > > brain days. its like my brain is loose > > inside my > > > > head, if I move my head > > > > to > > > > > > the left, my brain takes time to come with > > it. > > > > geeze that makes no > > > > sense. > > > > > > if I told you the rest of my neurological > > > > symptoms, I might be put in a > > > > > > rubber room! ask your hubby for his > > patience. > > > > > > > > > > > > roe > > > > > > > > > > > > [Non-text portions of this message have been > > > > removed] > > > > > > > > > > > > Welcome to > > > > > > > > > > > > Easy Reference: > > > === message truncated === > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2001 Report Share Posted June 11, 2001 Kris, My brother and his wife looked on an old web site when I first got sick. There comment was that I had more symptoms than what was on that list and it said Lyme was not common in Tn. Soooo, they think it something else and wont let my nephews come over to play with my kids, but they don't mind if my kids go to there house. There will be stupid people in all families. I took them a book about Lyme and they didn't even read it. That's okay though tere not as perfect as they think either. Sheryl Re: [ ] Hello > It kills me that people can't be more understanding ( & > educated!!) People can be so cruel. I don't have any > support from my family--they just can't understand ( > or don't want to). I think in my life the only ones > who do understand what 'we' live with, are the ones > living with me!...my boyfriend & our children. As for > 'outside' opinions...ignore them...they'll never > understand until they get lyme. You could always hand > them a pamphlet...help to educate them, so next time > they'll be more prepared before they run their mouths! > > Kris > > > --- LymeDizzy@... wrote: > > In a message dated 6/9/2001 6:17:39 PM Eastern > > Daylight Time, > > roe325@... writes: > > > > > > > im sick of people i just went outside to lie down > > to > > > relax and my neigbors said get ajob i said i cant > > work > > > they said yes you can imstarting to hate alot of > > > people i lost my freiends from this and my family > > i > > > cant take this stupid remarks. > > > --- Sheryl > > > > > > > > > > Next time he or she says get a job tell them to get > > a life this way they > > don't have to sit around and live through yours > > *beams sarcasticly* > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 In a message dated 6/11/2001 12:29:45 PM Eastern Daylight Time, sjbeardaolcom@... writes: > a, > I would guess that after your son has been away from home for awhile, > that your relationship will slowly improve. College is a helpful > maturity booster, and the distance between you will help erase the > daily pressures between you as well. > Have hope and be strong. > Jenni Dear Jenni, Thanks for writing. I think you are right. It has happened many times before & hopefully, will happen again. Getting away from home is the right thing for my son. He needs it. Despite everything, I love him so much & will miss him. Hugs, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 --- leesina@... wrote: >I notice that when I get upset or nervous, I get dizzy. Kind of like losing my equalibrium. Does this happen to anyone else? I am always nevous and can hardly relax. < Hi . There actually were posts earlier today and maybe yesterday on anxiety and panic disorders associated with Candida. Try going to your page and then to the search function for archived messages. It works pretty well. Yes, many of us have problems in that area. Some people find that calcium supplements help. A big recommendation on this list was for coral calcium you might have to buy on line. It helps me, but I am heavily drugged most of the time! Still get overly anxious. Took three showers this morning because I was sweating so much waiting for a repairman. I bit my cheek hard enough to draw blood, went out in the backyard and used an axe to split some wood just to work off some of the panic. While I have external factors that drive much of my anxiety and depression, candida related health problems are a serious contributor. Rose __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2001 Report Share Posted June 12, 2001 Hi My name is diann. I`m new to the group as well. I have had problems with my nerves since a near fatal fever of unknown origin I was 6yrs old. I`ve been on about everything at one time or another. Recently I started using a tincture of lobella. I understand that it is controversial but I am having good results. I set it out a while to let the alcohol evaporate. Do you have a problem with certain kinds of sounds causing a sort of electric unpleasant sensation go thru your chest and arms? If so the lobella is the first thing I`ve found that helps and isn`t a controlled highly addictive substance. Some things to avoid that you probably already know are caffiene, nicotine, sugars, antihistamies,alcohol,stimulants,artane and possibbly wheat. I`ve not made a complete list if you know of more helpful things please let me know. Do you have a problem with insomnia? My heart goes out to you . I `m very well aquainted with bad nerves it`s a miserable problem. Blessings, Diann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2001 Report Share Posted June 15, 2001 Hello > > > > > > > > > > Bad news about Dr. Horton. Seems as though now Dr. Crist is the only > >one > >to > > > help us. > > > _________________________________________________________________ > > > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > > > > > > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Hi , Welcome! You sure lead a busy life. I bet your daughter is very proud of you, raising her alone, going to school and being such a success in your business life. I can't imagine traveling as much as you do. I understand why you are exhausted all the time. Please tell me what CMV virus is? I don't believe I have heard of it. My son Tommy was diagnosed with AIH this past January. He was 11 then. His LFTs were in the mid 300s when he was diagnosed. They went up and down since December, but are almost normal now. He was also in the hospital from July until October last year with impacted kidney stones. Just when we thought that was behind us for a while, he ended up in the hospital New Year's Eve with a painful lump in the neck that had been there for several weeks and severe pain in the liver area. He then underwent the normal AIH testing, many blood tests, upper GI, endoscopy, colonoscopy, ultrasounds, CT scans and a liver biopsy. He had the constant itching, fatigue, and dark urine. Anyway, despite all of this, Tommy ended the school year with a straight A average for the year. He just wanted to be a normal kid. Luanne's son Ty just graduated high school and made the honor roll all four years. He was in the hospital for three or four months this year and suffers from multiple autoimmune diseases. He will be attending college this fall and is working at Six Flags full time as a manager. He is currently being listed for a liver transplant. Sorry Luanne about the bragging rights. I'm proud of Ty too. Elyse is a 14 year old girl who also has AIH. She is working as a life guard this summer. She too leads a " normal " life (I'm very proud of her too). She can't be bothered worrying about her disease. She lets her mother April do the worrying for her. Cheryl is a high school teacher who does a lot of extra curricular work with the kids and is raising her baby granddaughter. She has AIH and PSC (did I get that right Cheryl). She has had a very tough year, but is making her way through it, still being a great teacher and a great Mom and Grandmother. There are many others here who lead great lives and have learned to live with their illnesses. Look back in the archives for Genny and Jodi's story. Genny just donated part of her liver to her daughter Jodi. Both are doing great. Anyway, I guess the point I'm trying to make is that there is life after AIH. You just adjust. AIH teaches you to enjoy life now and to appreciate the good things and most importantly to slow down a little and listen to your body. You have overcome a lot of odds already, this is just the next one to deal with. I know it is not easy. I was that over achieving person until SLE knocked me out of the ball game (I was an environmental engineer). I have good days and bad days. You will too. AIH progresses differently with different people. Most people respond positively to the meds. There are side effects, but living with the side effects is better than the alternative. Get creative about work when you don't feel well. You say most of it is teamwork. If you have a bad day, can you conference in by phone or computer while you rest? Get lots of rest on those long plane rides. Explain your situation to your co workers. You might be surprised at their show of support for you. Good luck on your dissertation. Sorry if I'm rambling, I've had a bad health day today and my brain isn't all there. But, I'm in a great mood! Debbie (Tommy's Mom) > [Original Message] > From: <susanmarysmith@...> > < > > Date: 6/27/01 8:09:13 PM > Subject: [ ] Hello > > Hello: > > My name is , I live in Connecticut, I am in my fourties, and I > live a stressed life as a software engineer/consultant. Last > November I began feeling extremely fatigued and weak. I wasn't too > concerned because I was working on an international project for > 9 months and I made at least 20 trips to Europe and 5 trips to Asia. > > I became so used to jet lag and multiple time zones that I just > expected to be tired. In January I saw the doctor because I had > severe itching /rash and I requested blood tests because I was so > fatigued. After 5 visits and 6 blood tests they told me I had the > CMV > virus and that it was self healing and I should rest more, eat > better, etc. The liver function tests were elevated, but they > thought this was due to the CMV. Four months later, I still felt so > tired so I had more test which indicated the same elevated LFT's. > The doc referred me (finally) to a gastroenterologist and a > hematologist. More blood-work now shows GGT (GGTP) levels very > elevated (285 - normal is 0-55), and the hematolgists said this > is certainly indicative of autoimmune disease (AIH/PBC). I return > to > the GI on Thursday.........we'll see what is next. > > My questions: > 1. Is there anyone who had the CMV virus, followed by a diagnosis of > AIH and/or PBC? > 2. What do people do about work ---- I am not well, but I am really > not sick either. I could work a normal schedule, but my problem is > that my job always tends to require 12-15 hour days of Teamwork -- I > end up sleeping all weekend, sometimes for 14-18 hours at a stretch. > > In consulting for a major Fortune 500 company, it is kind of all or > none. How do people handle working? > 3. How do high energy over-achievers begin to accept their > limitations? > 4 What kind of questions should I ask the doctors? > 5. I admit my vanity and am petrified about weight gain. Any advice > if on prednisone? > > I have raised a 21 year old child by myself and I managed to juggle > my full time job and full time school over the last four years-- I > earned my Masters degree in 1998 and have completed 2 years of > course > work for my Ph.D. All I need is the dissertation, but I can't find > the energy to work on this for six months. I cannot stand being > physically limited. > > Thanks.................. > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 Hi Bev, I was wondering if you have read the book called " How to prevent Breast Cancer " by Harvey Diamond? It will help you. You can check it out at his website. Also look into the Natural Hygiene sites. Best of Luck to you, Annee >From: bmmkievit@... >Reply- > >Subject: [ ] hello >Date: Tue, 10 Jul 2001 19:41:59 EDT > >My name is Bev. I'm new to the group. I'm on my way to curing my cancer. I >was diagnosed with breast cancer in May. I am currently receiving >treatments >at a clinic in Arizona. It's a naturopathic clinic that treats the immune >system. I would love to not have surgery but I may need to do so along with >this treatment. I would like to not have my Lymph nodes removed but haven't >found a surgeon that will do that. If there is anyone out >there >that would have any information to share, I welcome it. I am scheduled to >see >a surgeon on July 12. > I look forward to sharing my successes with everyone. > Bev _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Hello Bev, I was originally diagnosed with breast cancer in 1990 and a mastectomy along with chemo and radiation. I had been cancer free for 11 years until just recently when a recurrence of some malignant breast cancer cells broke off and invaded my pleural (lung cavity.) i started taking the following supplements a few weeks ago and my tumor markers have already decreased by over 50% Transfer Factor Plus - for stimulation of immune system and natural killer cells EFA's- essential fatty acids Omega 3 and flaxseed oil Grapeseed extract - for antioxidant protection. Tocotrienol- a form of vitamin E from palm oil that binds to estrogen receptors to help prevent cancer from forming. Pamela __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 Dear , Welcome to the group. It sounds like that you have had a long tough road with your little one. You will get lots of support here and information. I have been here for two years now. n is now 12 with systemic JRA. Keep questioning the doctors, and if you are uncomfortable with something let them know. Usually, but not always the doctors tend to prescribe methotrexate as the first DMARD. (disease modifying anti rheumatoid drug). Though n is not on it, she is on plaquenil. There are side effects to all drugs, but as you will read, most children tend to tolerate these medications with little or no side effects. If your child has side effects, let your doctor know your concerns to see if a change is in order. The beginning of the disease seems to be the worst until the right cocktail is found for your child. As a single mom it would be so much harder to deal with this disease. You may want to contact your local Arthritis chapter to see if there is a parent support group in your area. I have found talking to other parents very helpful. God bless. , Mom to n-age 12 systemic JRA. >From: carneyval@... >Reply- >< > >Subject: Hello >Date: Fri, 17 Aug 2001 10:57:26 EDT > >Hello! I am new to the group, my name is and my son was >diagnosed with Systemic JRA about a month ago. I think i am still in a >daze, and a little bit in denial, even though when the possibility was >first mentioned I began reading everything that I could get my hands on and >was pretty sure of the diagnosis before the Doctors agreed. He was >hospitilized twice before all was evaluated. He is on a total of 27 mg of >Prednilosone daily (spaced out in three doses) - which he has been on for >about a month. He was previously on decreasing doses of Prednilosone every >other day for nephrotic syndrome associated with Minimal Change Disease >which he was diagnosed with May 2000 (in the hospital on Mother's Day). He >had been hospitilized twice since then for nephrotic syndrome with a total >of three relapses of the nephrotic syndrome before the JRA symptoms >materilized - He had a relapse of the nephrotic syndrome, brought on by JRA >(or the virus as they were then calling ! >it)- so was taking the Prednilos >one - and the systemic symptoms disapeared after the med was started, and >reappeared as we began to taper the Prednilosone as indicated by his >nephrotic symptoms. I am not sure if the two are connected - it seems they >may be, though his Nephrologist maintains they are separate. She noted >that the good thing is that since he will be on the high dose Prednilosone >for so long that will prevent a relapse of the nephrotic syndrome. (am i >supposed to cheer now?) (I usually call him Robbie and here lately >Rob) will be four in October. He was a 28 week Preemie who spent the first >eight weeks of his life in the NICU. He had surgery at five months >(relatively minor - if that is possible at five months - he was so small >the docs were concerned about anesthesia). Rob weighed 2 lbs 7 oz at birth >and was still under 11 pounds at ten months. Still small for his age, he >has been growing steadily, so this has me concerned about how it will >affect his growth, as I was already con! >cerned about the Prednilosone's >affect prior to the JRA. Though at this point I guess the growth issue is >only one of my many concerns. After I found this group and began reading - >the tears finally came - so I got some of that out of my system and I >appreciate all that all of you do to help out each other - and now me. It >is really hard, on Rob's bad days to look at him when he tells me in his >very grown up matter-of-fact voice, " Mom, the pain won't go away. " Not a >question - a statement of acceptance. I tell him he will have good days >and bad days, and that the Doctors will find the right way to help him. He >told me last night that he wasn't going to be sick any more - that he >didn't like going to the doctor. Last week, when we were at the hospital >for labwork, we stopped by the cafeteria for lunch (yum! Rob's idea, not >mine) and went to get him an ice cream bar for desert, on the way back to >the table he said " Mom, I want to take it to my room upstairs & watch tv " >He's spent so much time as an in! >patient recently that he assumed > we were staying. >Rob's JRA symptoms started with a slight limp - he said that he was pushed >off a bike at school (daycare) - but the next day at school he told them >that he fell off a scooter at the store the night before (we hadn't been >anywhere and there was no scooter) I assumed that he had hurt himself - >but just didn't remember what happened. The next day the limp was severe >and he was in a lot of pain - a trip to the doc and multiple xrays and no >anwers - and was given motrin. The next night he cried and then screamed >in his sleep (not waking right away) about the pain in his arms and >shoulder and wanted band-aids on his elbos. His temp was 104.5. I gave >him Motrin and held him until morning and went to his regular doctor. That >morning he held his arms close to his body, walked like an old man and >would hold my hand when crossing the street - because it hurt too much for >me to touch his hand. The did labs, sent us home saying it was probably >viral. His temp was back up when we go! >t home, then the doc called, sai >d his labs didn't look good, and had me bring him to the hosp for admission >and more tests. The second admission he was even sicker, high fevers, >rashes that came and went, pain - his liver and spleen were enlarged (He >wouldn't walk many days) He wanted me to pick him up, wrapping him in a >blanket first so I wouldn't hurt him as much when touching him (The blanket >was his idea - he's a pretty smart kid). I am a divorced, working mom so I >am exhausted and know I need to keep it together so I can care for him. >They started him on cyclosporine earlier this week - and I am not at all >happy with the side affects I am reading associated with this one - >particularly long term. > >Well, I tend to ramble even on good days - and this has turned into a much >longer email that I anticipated. I apologized for my lack of brevity, and >thank you in advance for listening, for being there. > >Thanks. > >Rob's mom > >To manage your subscription settings, please visit: > > >For links to websites about JRA: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 Welcome ! I, too, am very new to all of this (daughter, Halie(6) Dx'd 2wks ago) so I don't, yet, have a whole lot of advice to give. What I can tell you is that you have found a terrific place to come for understanding, comfort, and as much advice as you could ever wish for. Everyone here is so dedicated to sharing their stories and holding your hand through the rough spots (sounds like you & Robbie have had your share!). I find myself asking questions here before even talking to our Rheumy as I know I will receive a variety of opinions and suggestions that no one else can offer. These people have made accepting this disease a much easier task than I had thought when my child was first diagnosed. Hang in there, ask questions, and know that you are not alone in this. Big hugs to both of you! God Bless, - mom to Halie, 6, Poly > Hello! I am new to the group, my name is and my son was diagnosed with Systemic JRA about a month ago. I think i am still in a daze, and a little bit in denial, even though when the possibility was first mentioned I began reading everything that I could get my hands on and was pretty sure of the diagnosis before the Doctors agreed. He was hospitilized twice before all was evaluated. He is on a total of 27 mg of Prednilosone daily (spaced out in three doses) - which he has been on for about a month. He was previously on decreasing doses of Prednilosone every other day for nephrotic syndrome associated with Minimal Change Disease which he was diagnosed with May 2000 (in the hospital on Mother's Day). He had been hospitilized twice since then for nephrotic syndrome with a total of three relapses of the nephrotic syndrome before the JRA symptoms materilized - He had a relapse of the nephrotic syndrome, brought on by JRA (or the virus as they were then calling ! > it)- so was taking the Prednilos > one - and the systemic symptoms disapeared after the med was started, and reappeared as we began to taper the Prednilosone as indicated by his nephrotic symptoms. I am not sure if the two are connected - it seems they may be, though his Nephrologist maintains they are separate. She noted that the good thing is that since he will be on the high dose Prednilosone for so long that will prevent a relapse of the nephrotic syndrome. (am i supposed to cheer now?) (I usually call him Robbie and here lately Rob) will be four in October. He was a 28 week Preemie who spent the first eight weeks of his life in the NICU. He had surgery at five months (relatively minor - if that is possible at five months - he was so small the docs were concerned about anesthesia). Rob weighed 2 lbs 7 oz at birth and was still under 11 pounds at ten months. Still small for his age, he has been growing steadily, so this has me concerned about how it will affect his growth, as I was already con! > cerned about the Prednilosone's > affect prior to the JRA. Though at this point I guess the growth issue is only one of my many concerns. After I found this group and began reading - the tears finally came - so I got some of that out of my system and I appreciate all that all of you do to help out each other - and now me. It is really hard, on Rob's bad days to look at him when he tells me in his very grown up matter-of-fact voice, " Mom, the pain won't go away. " Not a question - a statement of acceptance. I tell him he will have good days and bad days, and that the Doctors will find the right way to help him. He told me last night that he wasn't going to be sick any more - that he didn't like going to the doctor. Last week, when we were at the hospital for labwork, we stopped by the cafeteria for lunch (yum! Rob's idea, not mine) and went to get him an ice cream bar for desert, on the way back to the table he said " Mom, I want to take it to my room upstairs & watch tv " He's spent so much time as an in! > patient recently that he assumed > we were staying. > Rob's JRA symptoms started with a slight limp - he said that he was pushed off a bike at school (daycare) - but the next day at school he told them that he fell off a scooter at the store the night before (we hadn't been anywhere and there was no scooter) I assumed that he had hurt himself - but just didn't remember what happened. The next day the limp was severe and he was in a lot of pain - a trip to the doc and multiple xrays and no anwers - and was given motrin. The next night he cried and then screamed in his sleep (not waking right away) about the pain in his arms and shoulder and wanted band-aids on his elbos. His temp was 104.5. I gave him Motrin and held him until morning and went to his regular doctor. That morning he held his arms close to his body, walked like an old man and would hold my hand when crossing the street - because it hurt too much for me to touch his hand. The did labs, sent us home saying it was probably viral. His temp was back up when we go! > t home, then the doc called, sai > d his labs didn't look good, and had me bring him to the hosp for admission and more tests. The second admission he was even sicker, high fevers, rashes that came and went, pain - his liver and spleen were enlarged (He wouldn't walk many days) He wanted me to pick him up, wrapping him in a blanket first so I wouldn't hurt him as much when touching him (The blanket was his idea - he's a pretty smart kid). I am a divorced, working mom so I am exhausted and know I need to keep it together so I can care for him. They started him on cyclosporine earlier this week - and I am not at all happy with the side affects I am reading associated with this one - particularly long term. > > Well, I tend to ramble even on good days - and this has turned into a much longer email that I anticipated. I apologized for my lack of brevity, and thank you in advance for listening, for being there. > > Thanks. > > Rob's mom Quote Link to comment Share on other sites More sharing options...
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