Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 In a message dated 1/16/04 5:26:09 PM Eastern Standard Time, lina5959@... writes: Oh, how I wish that I could tell you something good, but you have Lyme and if it has already affected your heart, it sounds like it is chronic. There is no known cure, but there is treatment. HI - If the disease has affected the joints what is the thoughts on if it is chronic. My family Dr (no not LLMD) is saying that because he had high titer that my son has not had it very long. I can think back almost 2 years of my son complaining of this hurts that hurts but I dismissd it as growing pains, etc. OH Well. Right now we are not doing any treatment at all. He has no joint swelling but he has joint pain. Dr. thinks he is fine - I know better. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi Drew, Oh, how I wish that I could tell you something good, but you have Lyme and if it has already affected your heart, it sounds like it is chronic. There is no known cure, but there is treatment. You definately need to find a Lyme Literate Dr. in your area to go to. All of us know that a couple of months worth of anti-biotics, only is the start of treatment. I have had Lyme for going on 16 years now, and I have been on anti-biotics for almost 14 of those years. What ever you do, find a LLMD and make an appointment as soon as you can. I wish you good luck!! And you came to the right place for support. > HELLO EVERYONE OR ANYONE, > MY NAME IS DREW, AND LIKE MANY OF US I WAS UNFORTUNATE ENOUGH TO > COME IN CONTACT WITH A LYME CARRING TIC.ALSO UNFORTUNATE ENOUGH AS TO > NOT HAVE ANY EARLY WARNING SINGS, SUCH AS A BULLS EYE RASH.THE ONLY > SYMPTONS I HAD WERE FLU LIKE, " MUSCLE ACHE,FATIUGE " BUT THIS WAS IN > THE MIDDLE OF JUNE,I WAS SURE IT WASNT THE FLU!!I TRIED NOT PAY IT > MUCH MIND,AND PRESSED ON WITH DAILY ACTIVITIES.ALL THE WHILE KNOWING, > BUT NOT WANTING ACCEPT THERE WAS SOMETHING SERIOUSLY WRONG.WELL,THE > END OF JUNE " 03 " CAME AND I FOUND OUT THE HARD WAY.I WAS > WORKING,FEELING REALLY TIERD AND DECIDED TO SIT DOWN,BUT INSTEAD I > PASSED OUT.I AWOKE I A CO-WORKERS CAR ON THE WAY TO THE HOSPITAL.STILL > FEELING LIKE S@#T,AND AT THIS POINT I WAS VERY SCARED FOR MY WELL > BEING.I HAD NEVER PASSED OUT BEFORE, OR HAD ANY SERIOUS MED.PROBLEMS. > THE HOSPITAL DID A BATTERY OF TESTS,LYME TITER WAS ONE,AND AMONG > OTHERS WAS AN E.K.G,THE RESULTS OF THIS TEST WAS NOT LOOKING GOOD!! > IT SHOWED THAT I HAD AN A-V BLOCKAGE IN MY HEART,WHICH BASICALY MEANS > THAT THE ELECTRICAL SIGNALS IN HEART WERE BEING DISRUPTED,FROM WHAT > THEY THOUGHT MIGHT BE LYME DISEASE IN ADVANCED STAGES.OK,SO NOW IM > FREAKIN OUT!!!TO TOP IT OFF THE CARDIOLOGIST RECOMENDED ME AS A > CANDIDATE FOR A PACEMAKER,CAN YOU BELIVE IT? I COULDNT! IM ONLY 28 YRS > OLD!!THEY URGED ME THAT THIS WAS MY BEST OPTION.IF MY HEART STOPPED > AGAIN I MAY NOT BE AS LUCKY AS LAST TIME AND ONLY PASSOUT FOR A FEW > MINUTES.THE PACER WOULD ENSURE THAT THIS WOULD'NT HAPPEN.THEY > CONVINCED ME TO GO THROUGH WITH THE PROCEDURE WHEN THEY TOLD ME THERE > WAS A CHANCE THAT I MAY BE ABEL TO HAVE THE PACER REMOVED, PENDING ON > THE RESULTS OF THE LYME TITTER. IF THE TEST WAS POS.THE PLAN WAS TO > UNDERGO 30 DAY OF I.V ROCHEFIN, FOLLOWED BY MORE INTENSIVE HEART TEST > TO DETERMIN WETHER THE ANTI-BODS WERE ABEL TO ALLEIVIATE THE A-V > BLOCKAGE.SO I HAD THE SURGURY,THE MEDS FOR A MONTH,THE INDEPTH HEART > STUDYS.NOW THEY SAY IM CURED,NO SINGS OF ABNORMAL RYTHEMS,I DONT NEED > THE PACER ANYMORE.OK,SO ANOTHER SURGURY TO TAKE IT OUT,ALL THIS > WITHIN A 2 MONTH TIME FRAME.MY HEAD WAS SPINNING SO FAST I DIDNT KNOW > IF I WAS COMING OR GOING.IT BEEN 7 MONTHS NOW,AND I CAN TELL YOU ONE > THING IM NOT CURED!!I HAVE DAYS I DONT WANNA MOVE,ACHEING MUSCLES, > STIFF NECK,FATIUGE.I NEED HELP,SUPPORT,AND ADVICE ON WHAT MY NEXT > STEPS SHOULD BE ON LEARNING TO LIVE WITH THIS DISEASE.I'VE HEARD WHAT > THE DOCTORS HAVE TO SAY,NOW I WANT TO HEAR WHAT THE PEOPLE HAVE TO > SAY!! > IF YOU MADE IT THIS FOR THANX FOR LISTENING. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 First of all yes I read the whole thing. You tell a great story. Next, I want to say I have been suffering from lyme since 1974. SO When I see the words LYME FOR LIFE??!!! I see oh my god no it cannot be I refuse to accept it. Seeing those words made me want to delete the message and not even read it. But as you can see I not only read it I'm replying. I keep hearing big things about Rosephin IV Some use it for years. I got Thrush and quit. Some symptoms possibly back Need to get to Doctor. Iam a 60 yr woman who lives in a Meth Lab I am afraid to leave my house because the 30yr old meth cooker has attacked me when I was walking up my front hall stair. was on the phone when Channon Faked an episode where she was yelling into a cellphone that I was attacking her I opened my door to let listen she heard the words Channon was saying. Sorry I went so far off topic. <lina5959@...> wrote: Hi Drew, Oh, how I wish that I could tell you something good, but you have Lyme and if it has already affected your heart, it sounds like it is chronic. There is no known cure, but there is treatment. You definately need to find a Lyme Literate Dr. in your area to go to. All of us know that a couple of months worth of anti-biotics, only is the start of treatment. I have had Lyme for going on 16 years now, and I have been on anti-biotics for almost 14 of those years. What ever you do, find a LLMD and make an appointment as soon as you can. I wish you good luck!! And you came to the right place for support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 hello linda, thank you for your response,i was shocked to see yours and 19 others.i didnt realize it, but it seems im just a grain of sand on miles of beach.it sure dose help to know your not alone,that there are people like you who have lived with this so long.if you dont mind me asking, i would like to know how you have dealt with it,and how it has effected your life.i would also like to know, what the first steps would be for finding a lyme litterate doc?are there speacialists?would an infectious disease doctor be considered lyme litterate? i hope my questions wernt too personal or intrusive. thank you again for your time and support!! drew <lina5959@...> wrote: Hi Drew, Oh, how I wish that I could tell you something good, but you have Lyme and if it has already affected your heart, it sounds like it is chronic. There is no known cure, but there is treatment. You definately need to find a Lyme Literate Dr. in your area to go to. All of us know that a couple of months worth of anti-biotics, only is the start of treatment. I have had Lyme for going on 16 years now, and I have been on anti-biotics for almost 14 of those years. What ever you do, find a LLMD and make an appointment as soon as you can. I wish you good luck!! And you came to the right place for support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 In a message dated 1/16/2004 3:18:27 PM Eastern Standard Time, drewhoo04@... writes: > NEXT > STEPS SHOULD BE ON LEARNING TO LIVE WITH THIS DISEASE.I'VE HEARD WHAT > THE DOCTORS HAVE TO SAY,NOW I WANT TO HEAR WHAT THE PEOPLE HAVE TO > SAY!! > Drew- Please send me your phone # privately and I will call you!!! My husband had the the whole heart episode and I can explain what is going on and what to do NATURALLY!!!!!!! I will call you. sue massie, CNHP 732 933-4011 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Drew- I have a very prominent lyme specialist treating me here in NJ---central portion of the state. If you'd like her name, email back privately at jerikratina144@.... Don't know how much driving it would be for you but easy to figure out on the computer, Jeri Re: [ ] LYME FOR LIFE??!!! In a message dated 1/16/2004 3:18:27 PM Eastern Standard Time, drewhoo04@... writes: > NEXT > STEPS SHOULD BE ON LEARNING TO LIVE WITH THIS DISEASE.I'VE HEARD WHAT > THE DOCTORS HAVE TO SAY,NOW I WANT TO HEAR WHAT THE PEOPLE HAVE TO > SAY!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Hi Drew, It is definately not easy to deal with, and no one can possibly know how bad it is, unless they have it! People will look at you and of course they say , well, you look fine. But, what they can't see is, how bad you hurt, how you are so tired that you could easily sleep all day, how you cannot remember from one moment to the next, how your heart starts going wack-o, and you just know you are having a heart attack, how your joints ache so bad that you swear there is a lumerjack in there chopping away at the cartilage. No it is not an easy road at all. I find that exercise, no matter if you just walk around the block, will help. Alot of prayers, and a good anti- depressant and a good pain management doctor will keep you going. I have managed to stay working the whole time, but sometimes I have to pop pills and cry all the way to work. You definately need someone to talk to that believes what you are going through. A friend, significant other, parent, siblins, whoever. I wish you no days of pain!! > Hi Drew, > Oh, how I wish that I could tell you something good, but you have > Lyme and if it has already affected your heart, it sounds like it is > chronic. There is no known cure, but there is treatment. You > definately need to find a Lyme Literate Dr. in your area to go to. > All of us know that a couple of months worth of anti-biotics, only is > the start of treatment. I have had Lyme for going on 16 years now, > and I have been on anti-biotics for almost 14 of those years. What > ever you do, find a LLMD and make an appointment as soon as you can. > I wish you good luck!! And you came to the right place for support. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Oh, and as for Lyme literate doctors, where do you live? Someone hear will probably know if I do not. -- In , andrew widmer <drewhoo04@y...> wrote: > hello linda, > thank you for your response,i was shocked to see yours and 19 others.i didnt realize it, > but it seems im just a grain of sand on miles of beach.it sure dose help to know your not alone,that there are people like you who have lived with this so long.if you dont mind me asking, i would like to know how you have dealt with it,and how it has effected your life.i > would also like to know, what the first steps would be for finding a lyme litterate doc?are > there speacialists?would an infectious disease doctor be considered lyme litterate? > i hope my questions wernt too personal or intrusive. thank you again for your time and > support!! drew > <lina5959@y...> wrote: > Hi Drew, > Oh, how I wish that I could tell you something good, but you have > Lyme and if it has already affected your heart, it sounds like it is > chronic. There is no known cure, but there is treatment. You > definately need to find a Lyme Literate Dr. in your area to go to. > All of us know that a couple of months worth of anti-biotics, only is > the start of treatment. I have had Lyme for going on 16 years now, > and I have been on anti-biotics for almost 14 of those years. What > ever you do, find a LLMD and make an appointment as soon as you can. > I wish you good luck!! And you came to the right place for support. > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.