Aa
Insight?
Hi all,
I hope this is in the right place, I'm not sure where to go anymore.
I've been sick for going on 15 years now. I got bit by three ticks but only one left it's mark. This was in Bristol Connecticut. (I'm now in Florida) The "bulls eye" wasn't as big as I've seen others have and went away after a week or so. (I had the ticks on me for around a week before they were found) I didn't really make a big deal out of it. Around that time I also got bit and scratched by a stray cat who looked pretty sick himself and started a wicked infection about two days later. I was put on antibiotics for 10 days or so and the swelling went away. A month later I got my first "sore" on the same arm I was bit and scratched on. It was a little round red scaly growth that took about a month to go away and before that was gone another showed up and then another and so on. I had severe headaches almost daily, fevers, pains that would shoot up and down the side of my head that would cause me to drool, stop speaking and ultimately pass out, stomach problems, diarrhea that lasted 4 years straight with no explanations why, sores all over my body, thyroid problems that would come and go, diabetes, pancreatic problems, lung disease, memory issues, balance issues, learning problems I never had previously, my whole attitude changed and was then diagnosed with a whole range of psychiatric disorders like OCD, Bipolar, Borderline Personality and schitzo-affective and depression with suicide thinking (who doesn't think of this being that sick with no hope in sight?) I've had blisters in my mouth, my eyelids turned purple, my gut blew up, my muscles and what felt like my bones were in constant pain, the kind no narcotic can touch, my neck and shoulder muscles turned so hard they feel like solid steel (according to the docs I have constant spasms which cause them to harden. I can hardly get out of a chair or go up a stair. Most days I can barely walk. This Lyme or whatever it is has taken over my body and has taken my life, my looks, my personality and my hope for ever getting better.
Recently I got another "flareup" which is similar to the others only some things have changed. My lungs have some kind of reticular nodular infiltrates (no idea what that is and neither did the lung doc looking at them) he decided to diagnose me with apnea after two sleep studies and forgot about my lungs. I was also diagnosed for many years with sarcoidosis (not really any proof except for symptoms and an xray) A couple years ago I went to the doc for a lump in my arm that looked like cancer and he told me it was a mosquito nose that broke off in my arm. OK so I got a biopsy and was told it was a benign tumor of some sort. It's still there growing and itching and freaking me out. He put me on steroids in Oct 2006 and only the past few weeks I'm weaning off of them thankfully. The steroids caused more problems one of which being mature cataracts (I'm only 37) one I had the lens replaced and now can't see out of it. That doc quit me and sent me to another. I started going back again because my hair fell out and the pain is so intense. My skin started giving me issues again and my sugars are sky high. I have skin patches now and odd sores that look like cigarette burns on my chest, neck, back and face. He has been saying for the past year I have Dermatomyositis but my blood comes back fairly normal except to say I do have an auto-immune disease and that it isn't rhuematic(sp?) By chance at our Feb appt I showed him pictures of my sores from the last bout to compare with the new ones and told him about the ticks (like everyone else) and decided to do a lime titer on me. I got my results from the lab (I always do since having so many docs I need to be ready) Quest did it and as usual the results don't make sense to me. This is what it said: Lyme Disease Ab-1 - 0.9 f (ref range is (0.0 to 0.9) The (f) footnote says that "Assay detects Lyme Disease Ig and IgM total antibodies" Then says it recommends a western blot. The thing is it also says Lyme Interpretation NEGATIVE. So what does that mean? I have it or I don't? I'm so used to blood tests coming up something and confirmation tests coming up normal. What kind of illness does this. I feel like I'm going crazy. I'm going back to the doc on March 5th. I hope I can have some answers to this and hope this all ends soon.
I apologize for this being so long and I have MUCH more to add to my list but I'm guessing you get the idea.
Any insight is appreciated.
Teri
I hope this is in the right place, I'm not sure where to go anymore.
I've been sick for going on 15 years now. I got bit by three ticks but only one left it's mark. This was in Bristol Connecticut. (I'm now in Florida) The "bulls eye" wasn't as big as I've seen others have and went away after a week or so. (I had the ticks on me for around a week before they were found) I didn't really make a big deal out of it. Around that time I also got bit and scratched by a stray cat who looked pretty sick himself and started a wicked infection about two days later. I was put on antibiotics for 10 days or so and the swelling went away. A month later I got my first "sore" on the same arm I was bit and scratched on. It was a little round red scaly growth that took about a month to go away and before that was gone another showed up and then another and so on. I had severe headaches almost daily, fevers, pains that would shoot up and down the side of my head that would cause me to drool, stop speaking and ultimately pass out, stomach problems, diarrhea that lasted 4 years straight with no explanations why, sores all over my body, thyroid problems that would come and go, diabetes, pancreatic problems, lung disease, memory issues, balance issues, learning problems I never had previously, my whole attitude changed and was then diagnosed with a whole range of psychiatric disorders like OCD, Bipolar, Borderline Personality and schitzo-affective and depression with suicide thinking (who doesn't think of this being that sick with no hope in sight?) I've had blisters in my mouth, my eyelids turned purple, my gut blew up, my muscles and what felt like my bones were in constant pain, the kind no narcotic can touch, my neck and shoulder muscles turned so hard they feel like solid steel (according to the docs I have constant spasms which cause them to harden. I can hardly get out of a chair or go up a stair. Most days I can barely walk. This Lyme or whatever it is has taken over my body and has taken my life, my looks, my personality and my hope for ever getting better.
Recently I got another "flareup" which is similar to the others only some things have changed. My lungs have some kind of reticular nodular infiltrates (no idea what that is and neither did the lung doc looking at them) he decided to diagnose me with apnea after two sleep studies and forgot about my lungs. I was also diagnosed for many years with sarcoidosis (not really any proof except for symptoms and an xray) A couple years ago I went to the doc for a lump in my arm that looked like cancer and he told me it was a mosquito nose that broke off in my arm. OK so I got a biopsy and was told it was a benign tumor of some sort. It's still there growing and itching and freaking me out. He put me on steroids in Oct 2006 and only the past few weeks I'm weaning off of them thankfully. The steroids caused more problems one of which being mature cataracts (I'm only 37) one I had the lens replaced and now can't see out of it. That doc quit me and sent me to another. I started going back again because my hair fell out and the pain is so intense. My skin started giving me issues again and my sugars are sky high. I have skin patches now and odd sores that look like cigarette burns on my chest, neck, back and face. He has been saying for the past year I have Dermatomyositis but my blood comes back fairly normal except to say I do have an auto-immune disease and that it isn't rhuematic(sp?) By chance at our Feb appt I showed him pictures of my sores from the last bout to compare with the new ones and told him about the ticks (like everyone else) and decided to do a lime titer on me. I got my results from the lab (I always do since having so many docs I need to be ready) Quest did it and as usual the results don't make sense to me. This is what it said: Lyme Disease Ab-1 - 0.9 f (ref range is (0.0 to 0.9) The (f) footnote says that "Assay detects Lyme Disease Ig and IgM total antibodies" Then says it recommends a western blot. The thing is it also says Lyme Interpretation NEGATIVE. So what does that mean? I have it or I don't? I'm so used to blood tests coming up something and confirmation tests coming up normal. What kind of illness does this. I feel like I'm going crazy. I'm going back to the doc on March 5th. I hope I can have some answers to this and hope this all ends soon.
I apologize for this being so long and I have MUCH more to add to my list but I'm guessing you get the idea.
Any insight is appreciated.
Teri
I just lost everything that I wrote, so I will try to remember; I am in the Greenwich/Riverside area of CT. There were a couple of families infected when we were (years ago). I never bothered to seek them out, I was too sick. Even my vet had trouble diagnosing Fritz, (our dog) even after I told him that he had lyme. He said: "Let's not be dramatic". But, I knew the symptoms and sure enough...
I am trying to think of something to help you. Maybe, just maybe I can speak to my old lyme doc and ask him for advise. He has since moved to Manhattan and I haven't been in touch with him for a few years, but you never know. I'll see.
But, in the mean time, do what jaksmom says and google igenex and see about their lyme test. And she also mentioned going on lymenet? if I'm not mistaken. Do that. They will have a lot of info for you. Do you know how I can send you a private e-mail?
Barbara
I am trying to think of something to help you. Maybe, just maybe I can speak to my old lyme doc and ask him for advise. He has since moved to Manhattan and I haven't been in touch with him for a few years, but you never know. I'll see.
But, in the mean time, do what jaksmom says and google igenex and see about their lyme test. And she also mentioned going on lymenet? if I'm not mistaken. Do that. They will have a lot of info for you. Do you know how I can send you a private e-mail?
Barbara
I'm not sure what the name of the book is but watched him leave to go "find" it and when he came back he made a comment I couldn't quite hear to the nurse then sat down. it was a yellow flip book, you know the kind where the spiral is at the top instead of the side? I never got the name of it. He said the most innoculous treatment was amoxicillian for 21 days. I'm not sure what innoculous (sp?) is but I'm figuring it is the lowest? He also stated he didn;t want me having yeast problems. I could care less about yeast when I have bugs crawling through my body. Yeast is the least of my problems.
I will go and check out those books at the library. I can't change dr's unless I pay for them. I'm on SSI because I can no longer work and can't afford a dr outright. However if I can just get better a little maybe I can go out and work (I just got out of school for Graphic Design) and with that kind of work I may just be able to swing it. I have come up with another issue though and that is my son and my other half having this also. Gene's sister had lyme and her knee swelled badly. Gene's knee is doing the same as hers and he has had no injuries and only 28 years old. I've read time and again about this lyme being contagious and that whole families would have this.
You said you got it in CT? Where? I got mine in Southington/Bristol line across from ESPN.
The closest lyme support group is in Jacksonville I believe. Way to far for me to go. I'm in central Florida about 100 miles or so from Tampa.
I will let you know how this works out when I get back from seeing dr death on the second...lol (just kidding:)
I will go and check out those books at the library. I can't change dr's unless I pay for them. I'm on SSI because I can no longer work and can't afford a dr outright. However if I can just get better a little maybe I can go out and work (I just got out of school for Graphic Design) and with that kind of work I may just be able to swing it. I have come up with another issue though and that is my son and my other half having this also. Gene's sister had lyme and her knee swelled badly. Gene's knee is doing the same as hers and he has had no injuries and only 28 years old. I've read time and again about this lyme being contagious and that whole families would have this.
You said you got it in CT? Where? I got mine in Southington/Bristol line across from ESPN.
The closest lyme support group is in Jacksonville I believe. Way to far for me to go. I'm in central Florida about 100 miles or so from Tampa.
I will let you know how this works out when I get back from seeing dr death on the second...lol (just kidding:)
I completely agree with you. It is an ego problem! And his mind is only moving in one direction;steroids. Can you possibly find a new doctor? His mind is closed to lyme disease-maybe the lyme disease foundation can help? I don't know, I've never used them for anything, but some people say they are helpful.
I wonder where your doctor came up with 21 days of antibiotics. Is that a magic number? I've always read that even when someone is first diagnosed (early on) that eight weeks is the minimum. I was treated on and off for eight years. Had to give up finally. But, I have had every single treatment available for lyme, including i.v. antibiotics. And even after only one year of having the disease and being very aggressive, I never fully recovered.
I don't know if I mentioned the books that might be helpful. Everything You Need To Know About Lyme Disease is one. I can't remember the others, but I found them in our local library. Do you have someone who can pick them up for you and go through them with you? I think it might be helpful. Who knows? Maybe they have info on how to find a good doctor. They're very informative.
I know exactly how your doctor makes you feel. It was done to me by many of them. And it is very hard to take. I got lucky and an acquaintance whom I hadn't known very long, heard I was sick and asked what my symptoms were. She was going through the same thing with her daughter and just "knew". She even told me what doctor to go to.
Have you tried at all to find any local lyme support groups? There may be one around. You never know.
I wish you luck at your next app't. Please let us know how it goes.
Barbara
I wonder where your doctor came up with 21 days of antibiotics. Is that a magic number? I've always read that even when someone is first diagnosed (early on) that eight weeks is the minimum. I was treated on and off for eight years. Had to give up finally. But, I have had every single treatment available for lyme, including i.v. antibiotics. And even after only one year of having the disease and being very aggressive, I never fully recovered.
I don't know if I mentioned the books that might be helpful. Everything You Need To Know About Lyme Disease is one. I can't remember the others, but I found them in our local library. Do you have someone who can pick them up for you and go through them with you? I think it might be helpful. Who knows? Maybe they have info on how to find a good doctor. They're very informative.
I know exactly how your doctor makes you feel. It was done to me by many of them. And it is very hard to take. I got lucky and an acquaintance whom I hadn't known very long, heard I was sick and asked what my symptoms were. She was going through the same thing with her daughter and just "knew". She even told me what doctor to go to.
Have you tried at all to find any local lyme support groups? There may be one around. You never know.
I wish you luck at your next app't. Please let us know how it goes.
Barbara
I told doctors years ago about the tick bite and the cat bite and they ignored it. I told other doctors I had over the years as well and still got ignored. I figure I'm just cursed or meant to suffer either one. Even the dr I have now isn't very interested in the test results, I feel it's more ego than anything. Everytime I try to tell him something new is happening or something old is starting up again he claims it's my steroid use although I had these problems for many years, LONG before I started steroids he still insists and if I argue he leaves the room. He isn't the only dr that has done this. Most times they throw up their hands and ship me off to another dr. I feel I'm just a headache to them.
So the only time I was tested for lyme (and it was to rule it out) was a couple months ago and like I said before, he said its either a past or current infection and then asked about the Plaquenil he started me on (which Im not tolerating well at all) Again I asked him about the lyme and he got annoyed with me and asked me if I wanted to be treated for it. I said of course!! He then gave me 21 days of Amoxicillian (500mg) and sent me on my way. I asked him when I should come back and he said whenever and I said how about 21 days?? He said yes thats fine. What kind of answer/treatment is that?
So now I'm gathering my info so I can help him help me and hopefully it works out. I'm very nervous about this next visit because just when I think this all may be over with soon they move on to something else. I try not to get depressed but how can you not?
Nobody wants to die especially from something they can get treated for. They may as well have said I have terminal cancer and theres nothing to be done about it, I would feel better then.
Teri
So the only time I was tested for lyme (and it was to rule it out) was a couple months ago and like I said before, he said its either a past or current infection and then asked about the Plaquenil he started me on (which Im not tolerating well at all) Again I asked him about the lyme and he got annoyed with me and asked me if I wanted to be treated for it. I said of course!! He then gave me 21 days of Amoxicillian (500mg) and sent me on my way. I asked him when I should come back and he said whenever and I said how about 21 days?? He said yes thats fine. What kind of answer/treatment is that?
So now I'm gathering my info so I can help him help me and hopefully it works out. I'm very nervous about this next visit because just when I think this all may be over with soon they move on to something else. I try not to get depressed but how can you not?
Nobody wants to die especially from something they can get treated for. They may as well have said I have terminal cancer and theres nothing to be done about it, I would feel better then.
Teri
I find it strange that your neurologist disagrees with you as far as your pain goes. He is not the one suffering. I have different types of pain in my legs; joint pain, muscle pain, non-stop problems with my feet; pain in all of my toes that no one has any explanation for. It just IS. I have yet to have a doctor tell me it's the same pain though. They don't know, so... Yes, I had problems with falling too, balance, etc. As you know, the problems from this disease do come and go, that's not unusual. Forgive me, but I don't remember reading whether or not you have had a lyme test in the past. And yes, I was also judged as you were. Try not to let it get you any more depressed. I knew that I was very ill and just had to find the right doctor. You will find the right one for you too.
Barbara
Barbara
Hi Barbara,
I have never been diagnosed officially because I don't have the swelling in the joints
just stiffness and pain especially when it rains or its cold. When I get up from a chair or just out of bed I'm so stiff and after moving around a little it starts to loosen up until I stop moving again and then it starts over. My knees are the worst and I never really injured them other than the usual falling down stuff when your a kid. They used to swell but that was a long time ago and doesn't happen anymore. I can't use my knees to get up or kneel on them at all. I have other leg issues also, I can hardly walk. If it isn't my foot, its my hips or something else. I fall alot to, my legs just give out and I'm down. no warnings at all. It seems to come and go though. One week I will fall several times and then for a month nothing at all and then out of the blue I'm on the floor again. I did take Celebrex years ago and it did work but I still had that muscle pain so they stopped giving it to me. In my opinion these are two different types of pain. My neurologist argues this with me. As for my doc being in private practice, no he isn't, he works through the health department which is nothing like CT health depts. In Florida the health dept is where WIC is, a womens clinic (mostly ob-gyn) and adult health. We also get birth certificates from there and not city/town hall like back home. I was told a vast number of docs here can't practice in any other state due to malpractice issues. This is encouraging isn't it? If you were talking about the hospital in CT my docs and I were trying to get records, it's a teaching hospital I'm sure you've heard of it, UCONN. I don't think they are private.
Thanks for your well wishes and prayers, I need all I can get I think:)
I find this situation very upsetting when after finding out my health problems are caused by lyme and not getting the correct treatment for it after all these years. No one ever listened to me, always judged me instead. We suffer silently most times.
Teri
I have never been diagnosed officially because I don't have the swelling in the joints
just stiffness and pain especially when it rains or its cold. When I get up from a chair or just out of bed I'm so stiff and after moving around a little it starts to loosen up until I stop moving again and then it starts over. My knees are the worst and I never really injured them other than the usual falling down stuff when your a kid. They used to swell but that was a long time ago and doesn't happen anymore. I can't use my knees to get up or kneel on them at all. I have other leg issues also, I can hardly walk. If it isn't my foot, its my hips or something else. I fall alot to, my legs just give out and I'm down. no warnings at all. It seems to come and go though. One week I will fall several times and then for a month nothing at all and then out of the blue I'm on the floor again. I did take Celebrex years ago and it did work but I still had that muscle pain so they stopped giving it to me. In my opinion these are two different types of pain. My neurologist argues this with me. As for my doc being in private practice, no he isn't, he works through the health department which is nothing like CT health depts. In Florida the health dept is where WIC is, a womens clinic (mostly ob-gyn) and adult health. We also get birth certificates from there and not city/town hall like back home. I was told a vast number of docs here can't practice in any other state due to malpractice issues. This is encouraging isn't it? If you were talking about the hospital in CT my docs and I were trying to get records, it's a teaching hospital I'm sure you've heard of it, UCONN. I don't think they are private.
Thanks for your well wishes and prayers, I need all I can get I think:)
I find this situation very upsetting when after finding out my health problems are caused by lyme and not getting the correct treatment for it after all these years. No one ever listened to me, always judged me instead. We suffer silently most times.
Teri
Hi Teri,
I'm sorry about that, I forgot they do not show e-mail addresses on here. So many of us have been through the same, frustrating experiences. I would probably still be trying to get diagnosed if someone hadn't told me all about lyme. Have they tried to find out if you have arthritis? I was never tested for it because we just "knew". Celebrex worked wonders for me. Went off it after a year and a half and the pain is so much better. Still there, but better. Wished you still lived in CT. I could recommend a good doctor for you. Please let us know how things work out on the 2nd. Praying for you.
Barbara
PS They can not keep your records from you! Is this a doctor in private practice refusing your requests?
I'm sorry about that, I forgot they do not show e-mail addresses on here. So many of us have been through the same, frustrating experiences. I would probably still be trying to get diagnosed if someone hadn't told me all about lyme. Have they tried to find out if you have arthritis? I was never tested for it because we just "knew". Celebrex worked wonders for me. Went off it after a year and a half and the pain is so much better. Still there, but better. Wished you still lived in CT. I could recommend a good doctor for you. Please let us know how things work out on the 2nd. Praying for you.
Barbara
PS They can not keep your records from you! Is this a doctor in private practice refusing your requests?
I'm going to the doc again April 2 and will ask him for a test for that. I don't know how it will work out, he doesn't listen to me much. I think trying to get him to give me more antibiotics is going to be hard enough. I also have to see a podiatrist and a rhuematologist because something new started in my foot a month ago and I can hardly walk on it now. The pain goes right up my leg into my hip. ER docs say there is no broken bones. Nothing unusal for me. I don't seem to ever get any real answers.
My nurse insists on the rhuem dr because my doc apparently got to her insisting on my lupus (that I don't believe I have at all) so I suppose he will send me there and maybe I will get my non-lupus proof that way. He claims I'm in denial. I guess I've been in denial for all the 100's of other diagnosis they claimed I had as well. As for my medical records, no one wants to give them up. In the past 5 years my Florida docs have been trying to obtain my records from CT and no luck at all so I have to redo everything I did back then. At this rate I won't be treated until it's to late, if it isnt to late already. The only way I get to see any record of mine is if I request it from the lab itself, otherwise my doc only voices it to me and tries to distract me with something else to shut me up. He once even told me to try and speak with a sweeter voice because no specialist will treat me with the voice I have now. I have 4 tumors or swollen glands (they havent decided which) right next to my voice box that turned my once soprano voice into a very deep, low "manly" sound. How can I change my voice to please another human being to treat me for my illness. Am I there to win a personality prize??
Its amazing what a teeny tiny tick can do to someone and it amazes me even more how many doctors could care less about it. Does anyone besides us care what happens to us?? I know lyme docs must but I can't afford that yet. I'm working on getting work in the Graphic Design field but my health won't let me commit to anything to big just yet. I think it stinks because that is the only way Im going to afford a lyme doc and LIVE. Frustrating........
babs I would write you back but the addy didn't show up.
Teri
My nurse insists on the rhuem dr because my doc apparently got to her insisting on my lupus (that I don't believe I have at all) so I suppose he will send me there and maybe I will get my non-lupus proof that way. He claims I'm in denial. I guess I've been in denial for all the 100's of other diagnosis they claimed I had as well. As for my medical records, no one wants to give them up. In the past 5 years my Florida docs have been trying to obtain my records from CT and no luck at all so I have to redo everything I did back then. At this rate I won't be treated until it's to late, if it isnt to late already. The only way I get to see any record of mine is if I request it from the lab itself, otherwise my doc only voices it to me and tries to distract me with something else to shut me up. He once even told me to try and speak with a sweeter voice because no specialist will treat me with the voice I have now. I have 4 tumors or swollen glands (they havent decided which) right next to my voice box that turned my once soprano voice into a very deep, low "manly" sound. How can I change my voice to please another human being to treat me for my illness. Am I there to win a personality prize??
Its amazing what a teeny tiny tick can do to someone and it amazes me even more how many doctors could care less about it. Does anyone besides us care what happens to us?? I know lyme docs must but I can't afford that yet. I'm working on getting work in the Graphic Design field but my health won't let me commit to anything to big just yet. I think it stinks because that is the only way Im going to afford a lyme doc and LIVE. Frustrating........
babs I would write you back but the addy didn't show up.
Teri
I'll tell you there are times when I think it's the end for me. Somehow I get over the infections and all the rest. I wonder if all those antibiotics I was taking was slowing it down some, at least enough to make me feel like I could go another week. I get so angry with the health professionals. They seem to be very ignorant in a number of things.
Yes I looked up the autism and that is why I asked. From what I read it doesn't seem to be proven 100% however I question it because I just had him 3 years ago and I already had lyme a little over a decade. Believe me I don't try to let this go, I just don't have the funds or get a decent doc that wants to take the time and help me survive. I have a toddler to raise and very worried I won't see him grow up. I was proposed to 5 years ago (by my baby's father) and dragged it out this long. I love him dearly but feel like he is wasting his time on me. My health is horrid and I don't know if I will make it to next year let alone many years of marriage. As for the protocols, I read about a salt and vitamin c regimen. I asked my doc about it and he just laughed. He laughed but he had to go in some book to see what they give for lyme treatment. I was laughing then...lol
I have been having a bad time the past few weeks and apologize for not responding sooner. I will try my best to come by and see whats going on:) Thank you much:)
Teri
Yes I looked up the autism and that is why I asked. From what I read it doesn't seem to be proven 100% however I question it because I just had him 3 years ago and I already had lyme a little over a decade. Believe me I don't try to let this go, I just don't have the funds or get a decent doc that wants to take the time and help me survive. I have a toddler to raise and very worried I won't see him grow up. I was proposed to 5 years ago (by my baby's father) and dragged it out this long. I love him dearly but feel like he is wasting his time on me. My health is horrid and I don't know if I will make it to next year let alone many years of marriage. As for the protocols, I read about a salt and vitamin c regimen. I asked my doc about it and he just laughed. He laughed but he had to go in some book to see what they give for lyme treatment. I was laughing then...lol
I have been having a bad time the past few weeks and apologize for not responding sooner. I will try my best to come by and see whats going on:) Thank you much:)
Teri
please dont let this go another year!!! Lyme can kill you! have you read about children with autism and lyme? I would google this if I were you. I post on healingwell.com this is a very good site for lyme also everynight at 8pm we meet at lymenet (sot) com under chat adn if you come there there are alot of people that have alot of experience that can help you there are also many protocols that dont involved doctors that might help. my name is morgan in the chat room if you decide to come in but please dont let this go another year! time is very crucial! In the last 3 months ive known 4 people that died with lyme and one that is very close to death.
babsesl is absolutely correct about your medical records. Though your doctors will hold them, the information belongs to you and it is illegal for anyone to deny you your records. Strangely, many docs & medical personnel have not been educated about this and they might act like you are asking for top-secret info that you're not supposed to have. My husband's previous employer was an insurance provider and he was given specific training about this issue.
Celiac is a permanent disease. It's discovered through a simple blood test; testing for gluten-anibodies. If you test positive here, you'll likely go through an endoscopy to see what the villi in your sm intestine look like. Celiac disease is when your body (particularly the villi) is destroyed by a protein called gluten, which is a wheat protein. Your villi absorb the vitamins & nutrients your body needs. So someone with celiac can suffer from any sort of illness that has to do with malnutrition. Brittle bones from lack of calcium & D, muscle problems, neurological disorders, rashes (dermitis herpetiformes in celiac cases), you name it.
You can be allergic to wheat but not be celiac. Celiac disease is when gluten actually causes damage to your body, whereas an allergy is your body putting up a fight. I thought my daughter had this, but it ended up she was only allergic to just about every food group! She's outgrown most of them, thank goodness.
Celiac is a permanent disease. It's discovered through a simple blood test; testing for gluten-anibodies. If you test positive here, you'll likely go through an endoscopy to see what the villi in your sm intestine look like. Celiac disease is when your body (particularly the villi) is destroyed by a protein called gluten, which is a wheat protein. Your villi absorb the vitamins & nutrients your body needs. So someone with celiac can suffer from any sort of illness that has to do with malnutrition. Brittle bones from lack of calcium & D, muscle problems, neurological disorders, rashes (dermitis herpetiformes in celiac cases), you name it.
You can be allergic to wheat but not be celiac. Celiac disease is when gluten actually causes damage to your body, whereas an allergy is your body putting up a fight. I thought my daughter had this, but it ended up she was only allergic to just about every food group! She's outgrown most of them, thank goodness.
I've been (and am still in) your situation. It's only twelve years for me though. Yes, I have (had) all the same problems. It's Lyme disease for me and our symptoms sound identical. Only once did I test postive for lyme(very common) and it was with a flourescent light test. My doctor did it for me before it was approved by the FDA. After a few years, he treated Lyme patients only because his practice got so busy since he was one of very few doctors in the area, Connecticut - also, that knew enough about Lyme. There is talk now that Lyme may be contagious. Everyone in my family had it, including our dog (his veterinarian even had trouble diagnosing him). After eight years, I gave up and thought I would take a break. I now go to Fibromyalgia and Fatigue Center in Norwalk, Ct. These problems of course, caused by the Lyme, no question. There is no cure, only treatment they hope will work. Your doctor's records are yours. He has to by law, if I'm not mistaken, give them to you if you ask for them. There are books out there that I learned so much from. I of course can't remember the names of them, but I will look into it if you want. Just let me know. You can email me at ***@****
To Deborah,
I haven't heard of Celiac and never been talked to about it by any doctor so I will see if he will test me for that. All he said to me was the test shows that I had a past infection or a current one. I told him it was current because I've never been treated for it only for so called lupus, dermatomyositis and sarcoidosis, all of which I don't have. The lupus (and lyme) are new diagnosis' (as of February) He claims lupus because I have a positive ANA. I don't recall ever getting that test done and want to see those results myself (he won't show me). This has done it's damage to me and has taken me out of life. I got pregnant during the 4 hurricanes we had in a row (I live in FL and my last baby was 17yrs before that) I never expected to have a baby and now feel I have passed this lyme onto him. He was born early with heart issues and now alt almost 3 is autistic. My fiance of 5 yrs is starting to display symptoms also. He's getting more and more headaches and odd pains all over and his knee is swelled up alot. Never had an injury there either so now I'm doubly worried. I know it's not passed through intercourse (though I've seen some places say it is). I think if there was anyway for me to pass it to him through my blood it would have to be a number of times I got cuts and he would "kiss" it better and get that in his mouth. I know, gross but that happens...lol
I know it's not funny but trying to make light of it.
I forget alot so bear with me. I just remembered the allergy question. I've never been alergic to anything until I was in my early 30's or so and was told I was allergic to milk. I am sometimes and sometimes I'm fine. It's odd. Some of these diseases go away then come back a couple years later (diabetes, hypothyroidism, pancreatitus(Sp?), etc) So I don't feel I'm truly ailing from any of them. Does Celiac go away on it's own? I stayed good with the bathroom issues for a good 3 years and then it started again (to date I'm still having it) I've also lost 40 pounds in a month and I eat all this junk. I don't get it. My doctor put me on amoxicillan for 21 days and my research syas that is not enough for me, not by a long shot. So I'm not sure what is going to happen now and I can't afford to pay straight out for a lyme doctor/tests/drugs because I can no longer work. I have state insurance through SSI and they don't like to pay for anything. My doctor really doesn't know much about lyme so I have to gather as much info for him as possible. Help him to help me so to speak.
I appreciate your input and will check into Celiac and see if this may be another problem.
To Jaksmom, I wish I knew this before spending the income tax on all the bills and other things needed for the year so that will have to wait another year before I can afford any of that unless I get lucky and my insurance and doctor treats me instead. Can this kill you? Thanks for your input it's very appreciated.
Teri
I haven't heard of Celiac and never been talked to about it by any doctor so I will see if he will test me for that. All he said to me was the test shows that I had a past infection or a current one. I told him it was current because I've never been treated for it only for so called lupus, dermatomyositis and sarcoidosis, all of which I don't have. The lupus (and lyme) are new diagnosis' (as of February) He claims lupus because I have a positive ANA. I don't recall ever getting that test done and want to see those results myself (he won't show me). This has done it's damage to me and has taken me out of life. I got pregnant during the 4 hurricanes we had in a row (I live in FL and my last baby was 17yrs before that) I never expected to have a baby and now feel I have passed this lyme onto him. He was born early with heart issues and now alt almost 3 is autistic. My fiance of 5 yrs is starting to display symptoms also. He's getting more and more headaches and odd pains all over and his knee is swelled up alot. Never had an injury there either so now I'm doubly worried. I know it's not passed through intercourse (though I've seen some places say it is). I think if there was anyway for me to pass it to him through my blood it would have to be a number of times I got cuts and he would "kiss" it better and get that in his mouth. I know, gross but that happens...lol
I know it's not funny but trying to make light of it.
I forget alot so bear with me. I just remembered the allergy question. I've never been alergic to anything until I was in my early 30's or so and was told I was allergic to milk. I am sometimes and sometimes I'm fine. It's odd. Some of these diseases go away then come back a couple years later (diabetes, hypothyroidism, pancreatitus(Sp?), etc) So I don't feel I'm truly ailing from any of them. Does Celiac go away on it's own? I stayed good with the bathroom issues for a good 3 years and then it started again (to date I'm still having it) I've also lost 40 pounds in a month and I eat all this junk. I don't get it. My doctor put me on amoxicillan for 21 days and my research syas that is not enough for me, not by a long shot. So I'm not sure what is going to happen now and I can't afford to pay straight out for a lyme doctor/tests/drugs because I can no longer work. I have state insurance through SSI and they don't like to pay for anything. My doctor really doesn't know much about lyme so I have to gather as much info for him as possible. Help him to help me so to speak.
I appreciate your input and will check into Celiac and see if this may be another problem.
To Jaksmom, I wish I knew this before spending the income tax on all the bills and other things needed for the year so that will have to wait another year before I can afford any of that unless I get lucky and my insurance and doctor treats me instead. Can this kill you? Thanks for your input it's very appreciated.
Teri
I think you should definitely have a doctor interpret your lyme results in plain 'positive' or 'negative' language. Yes, those are all symptoms of lyme.
A question for you...have you been checked for intolerances or allergies? Specifically, celiac disease? (This will not show up on an allergy test)
Your diarrhea for 4 years made me wonder. Celiac can also cause all those symptoms.
I've not had celiac, but I have had lyme disease.
A question for you...have you been checked for intolerances or allergies? Specifically, celiac disease? (This will not show up on an allergy test)
Your diarrhea for 4 years made me wonder. Celiac can also cause all those symptoms.
I've not had celiac, but I have had lyme disease.
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