Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 In a message dated 3/6/2006 7:10:01 PM Central Standard Time, lemieuxplbg@... writes: Hi, my name is Kim, my husband has rheumatiod arthritis, he is 50 years old and has had it about 10 years He is on humira, methotrexate, folic acid, arava, celebrex,and prednisone. He had the joints remove out of his toes on 1 foot so he could wear shoes he said it was the best thing he could have done. Just thought I would join to talk to other people. Hi Kim! Welcome! I'm , 27 with RA. Married, 2 kids, stay home mom... that about covers it. lol This is a great group of people to talk to about anything. HUGS take care from PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 I am not a doctor but if he was only diagnosed in September, and he hs not been on treatment consistently. I'd say it means he is still quite sick with Lyme. Our LLMD suggested our kids, who have chronic Lyme, might well be on antibiotics for two years. Keep the faith, get him in to see an LLMD, and keep him on treatment. It is a rough course but it WILL get better. Hang in there. Natasha From: Tiffanie <tiffanies_towing> Subject: [ ] HI. I'M A NEW MEMBER Date: Tuesday, January 12, 2010, 9:26 PM              My name is Tiffanie. I live on Long Island. My son just turnrd 13. He fell back in Sept. playing football. He complained for 4 days about his knee hurting. No swelling or bruising. Dr. said just sprained/twisted. 4 days later it looked like a balloon. It was HUGE !! Went to ER where they drained it and called me next day saying he has Lyme. I was shocked. He never got bit that I knew of. Went to infectious disease dr. and they said it was late stage for him to develop knee arthritis. He had a spinal tap. 7 times to get it right. Thank gos no meningitis or lyme in cerebral fluis. They said there was trace amount which was a pass through from the blood ?? So he didn't need a pickline (?). He was on doxyxline for 2 days and back in hospital getting IV fluids from violently throwing up and dehydration. Stopped Doxy for 2 wks then started again. I'm sorry for rambling but I know nothing about this disease just what I read online. Now his knee hurts again and is tiny bit swollen. I'll call I.D. in the am to follow up. Will he always have this ?               Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2010 Report Share Posted January 19, 2010 I agree. Infectious Disease doctors do not follow the same protocol as a Lymes Specialist. As a matter of fact they are on totally different spectrums of treatment. That's why Lyme's treatments are so controversial. I'm even surprised they agreed to treat him. The fact is giving him antibx for a month or two and then quitting will just aggravate the spirochetes and in a few months afterward he will be riddled with it worse than before the treatment. You have to kill " all of them " before you stop treatment. That takes many months minimum. The only way a short term course works is if you just got bitten and you know for sure that your Lymes is brand new as in a few days old. A doctor told me... It's like stepping on an ant bed, when you only kill a portion of them, they just feel threatened and then reproduce faster. Suzanne On Jan 19, 2010, at 2:50 PM, Natasha Moiseyev wrote: > I am not a doctor but if he was only diagnosed in September, and he > hs not been on treatment consistently. I'd say it means he is still > quite sick with Lyme. Our LLMD suggested our kids, who have chronic > Lyme, might well be on antibiotics for two years. > > Keep the faith, get him in to see an LLMD, and keep him on > treatment. It is a rough course but it WILL get better. > > Hang in there. > > Natasha > > > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 I couldn't go through with it. I have a regular inf. disease dr. she didn't like the fact that I was questioning her yesterday after reading so much and talking to my future " niece in law " who has chronic lyme for yrs and now diagnosed with M.S. She's 23. Her picc line broke in the chest after 3 days and they said the body will eventually absorb the plastic?? Now she gets midlines and said they are so much better. They were never mentioned to me. Anyway I convinced the dr. to start the oral again and see how he tolerates it. I think the problem last time was the tylenol that was recalled. the bottle I have matches one of the lot #'s on the FDA website. please pray that he tolerates it. In the meantime I need to find an LLMD that takes my insurance since I'm in the process of applying for disablity due to my severe heart problems from myocarditis due to pneumonia I had. Thanks everyone for being there for me. It means so much. I cant even express my gratitude to all of you. > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 It's really hard to find a good LLMD that takes ins.... most do NOT. But if you just make an appt w/ Dr in CT you only need to make a partial pmt at the time of the visit and then you can apply for lymeaid. They will give you the paperwork in the office. i applied the same day as the visit and it only took like a week and we were given $1000. They write the check right to the Dr.'s office and the Dr will reimburse you if you already paid or they can keep the bal. on your account and the money can go towards paying for future office visits... they will let you make the choice....I mentioned the lymeaid on this blog and some other mom's said that we shouldn't bother applying that there weren't anymore funds avail but I applied nayway b/c I was in a position of being out of work and not recieving disab. benefits so I figured we had nothing to loose.. and we got 1000$ and it only took a week or so...Really Dr is the best people travel cross country for his help.. ask any mom on this site and I think they will all tell you the same thing..Good Luck!PS I don't mean to sound pushy pls dont feel that way I am just speaking from my own experience w/ lyme and my 12 yr old son's > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > >     My name is Tiffanie. I live on Long Island. My son  > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 No of course I dont think you are pushy. I really appreciate it. Right now I am trying to get pre authorization from my ins. co to go to Boston to Dr. Sam Donta..anyone hear of him. I will also try for lymeaid in the meantime. How much is a partial paymt ? > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Yes, Dr. D. is good, too, though he is not a pediatric specialist and I don't think (from what I've heard) he readily goes the IV route. Dr. is the best. He saved my son's life. The drive to Connecticut is not bad at all. Don't know where you are located, but I live in NH and it was just about three hours. I recently recommended two people to see him and their children are seeing results WITHIN WEEKS of getting on medication that was prescribed based on a thorough evaluation by Dr. J. Good luck, From: [mailto: ] On Behalf Of Tiffanie Sent: Thursday, January 21, 2010 2:18 PM Subject: RE: [ ] HI. I'M A NEW MEMBER No of course I dont think you are pushy. I really appreciate it. Right now I am trying to get pre authorization from my ins. co to go to Boston to Dr. Sam Donta..anyone hear of him. I will also try for lymeaid in the meantime. How much is a partial paymt ? > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 My son goes to Dr. , and has been on antibiotics for about 3 1/2 months. We have seen an improvement with his physical symptoms , but none at all with his psychiatric symptoms.Any thoughts? Judy ________________________________ From: Hall <Jkathhall@...> Sent: Thu, January 21, 2010 2:26:13 PM Subject: RE: [ ] HI. I'M A NEW MEMBER Â Yes, Dr. D. is good, too, though he is not a pediatric specialist and I don't think (from what I've heard) he readily goes the IV route. Dr. is the best. He saved my son's life. The drive to Connecticut is not bad at all. Don't know where you are located, but I live in NH and it was just about three hours. I recently recommended two people to see him and their children are seeing results WITHIN WEEKS of getting on medication that was prescribed based on a thorough evaluation by Dr. J. Good luck, From: [mailto: ] On Behalf Of Tiffanie Sent: Thursday, January 21, 2010 2:18 PM Subject: RE: [ ] HI. I'M A NEW MEMBER No of course I dont think you are pushy. I really appreciate it. Right now I am trying to get pre authorization from my ins. co to go to Boston to Dr. Sam Donta..anyone hear of him. I will also try for lymeaid in the meantime. How much is a partial paymt ? > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Yeah well now my pediatrician will NOT give me a referral for the ins. co for Dr. donta because he agrees with ID dr. who doesn't know her a** from her elbow...excuse the language I am very frustrated right now. I'm telling ya. he must get some type of kickback from her or something. I tried the lyme aid 4 kids website and nothing. cant get in touch. I live on Long Island by the way. > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 How much do you pay for dr. . Did you get the lymeaid. > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 I just spoke to Dr. office again. They are sending me the application for lymeaid as we speak. Something positive.... > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 We only went to one appt so far and it cost $875.00 plus an additional $350.00 for extra bloodwork. I filled out all the paperwork for lymeaid months ago and sent them to Dr. office and never recieved any response or any reimbursement. Wish I had better news for you!( sigh!!) Judy ________________________________ From: Tiffanie <tiffanies_towing@...> Sent: Thu, January 21, 2010 3:02:06 PM Subject: Re: [ ] HI. I'M A NEW MEMBER Â How much do you pay for dr. . Did you get the lymeaid. > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Ok now what if it costs over the $1000 that lymeaid provides. Will they continue to pay for further treatment ? Tiffanie We only went to one appt so far and it cost $875.00 plus an additional $350.00 for extra bloodwork. I filled out all the paperwork for lymeaid months ago and sent them to Dr. office and never recieved any response or any reimbursement. Wish I had better news for you!( sigh!!) Judy From: laina pedro <Lainamariepedro <mailto:Lainamariep edro%40. com> > Subject: RE: [ ] HI. I'M A NEW MEMBER <mailto:Lyme_ Aid_Parents% 40groups. com> Date: Thursday, January 21, 2010, 11:30 AM It's really hard to find a good LLMD that takes ins.... most do NOT. But if you just make an appt w/ Dr in CT you only need to make a partial pmt at the time of the visit and then you can apply for lymeaid. They will give you the paperwork in the office. i applied the same day as the visit and it only took like a week and we were given $1000. They write the check right to the Dr.'s office and the Dr will reimburse you if you already paid or they can keep the bal. on your account and the money can go towards paying for future office visits... they will let you make the choice....I mentioned the lymeaid on this blog and some other mom's said that we shouldn't bother applying that there weren't anymore funds avail but I applied nayway b/c I was in a position of being out of work and not recieving disab. benefits so I figured we had nothing to loose.. and we got 1000$ and it only took a week or so...Really Dr is the best people travel cross country for his help.. ask any mom on this site and I think they will all tell you the same thing..Good Luck!PS I don't mean to sound pushy pls dont feel that way I am just speaking from my own experience w/ lyme and my 12 yr old son's > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 as far as i know the grants are only up to $1000 and that is usually used to cover the first visit and tests for the disease.the rest is out of pocket. at least all my meds have been covered by my insurance this past year so that can save a lot of $$. On Thu, Jan 21, 2010 at 1:05 PM, Tiffanie <tiffanies_towing@...>wrote: > > > Ok now what if it costs over the $1000 that lymeaid provides. Will they > continue to pay for further treatment ? > > Tiffanie > > > > We only went to one appt so far and it cost $875.00 plus an additional > $350.00 for extra bloodwork. I filled out all the paperwork for lymeaid > months ago and sent them to Dr. office and never recieved any response > or any reimbursement. > > Wish I had better news for you!( sigh!!) > > Judy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Not that I am aware of. judy ________________________________ From: Tiffanie <tiffanies_towing@...> Sent: Thu, January 21, 2010 4:05:59 PM Subject: Re: [ ] HI. I'M A NEW MEMBER  Ok now what if it costs over the $1000 that lymeaid provides. Will they continue to pay for further treatment ?  Tiffanie   We only went to one appt so far and it cost $875.00 plus an additional $350.00 for extra bloodwork. I filled out all the paperwork for lymeaid months ago and sent them to Dr. office and never recieved any response or any reimbursement. Wish I had better news for you!( sigh!!) Judy  From: laina pedro <Lainamariepedro <mailto:Lainamariep edro%40. com> > Subject: RE: [ ] HI. I'M A NEW MEMBER <mailto:Lyme_ Aid_Parents% 40groups. com> Date: Thursday, January 21, 2010, 11:30 AM It's really hard to find a good LLMD that takes ins.... most do NOT. But if you just make an appt w/ Dr in CT you only need to make a partial pmt at the time of the visit and then you can apply for lymeaid. They will give you the paperwork in the office. i applied the same day as the visit and it only took like a week and we were given $1000. They write the check right to the Dr.'s office and the Dr will reimburse you if you already paid or they can keep the bal. on your account and the money can go towards paying for future office visits... they will let you make the choice....I mentioned the lymeaid on this blog and some other mom's said that we shouldn't bother applying that there weren't anymore funds avail but I applied nayway b/c I was in a position of being out of work and not recieving disab. benefits so I figured we had nothing to loose.. and we got 1000$ and it only took a week or so...Really Dr is the best people travel cross country for his help.. ask any mom on this site and I think they will all tell you the same thing..Good Luck!PS I don't mean to sound pushy pls dont feel that way I am just speaking from my own experience w/ lyme and my 12 yr old son's > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 So the meds should be covered ? But have many follow up visits do we need ? Do you think the $1000 would cover everything until he's better ? How do they know if he's getting better ? ID tells me they dont run further tests/ they consider him cured after the month course of Doxy, I think thats ludicrous, do they check his levels periodically ? > > > Ok now what if it costs over the $1000 that lymeaid provides. Will they > continue to pay for further treatment ? > > Tiffanie > > > > We only went to one appt so far and it cost $875.00 plus an additional > $350.00 for extra bloodwork. I filled out all the paperwork for lymeaid > months ago and sent them to Dr. office and never recieved any response > or any reimbursement. > > Wish I had better news for you!( sigh!!) > > Judy > > > ------------------------------------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix.net/health/lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl.com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 We are being treated by a LLMD in California. He charges around $300 per followup visit, but we only go back about every 2 months. He checks levels periodically, but mostly after clinical symptoms are subsiding or when some clinical symptoms lead him to believe that something needs to be more precisely identified. I do not think that $1000 would cover your son's entire treatment if he has chronic Lyme. However, our insurance does cover most of the standard lab tests (not Igenex, sadly, because it felt that Igenex should have only charged $40 for its super test, sigh) and meds with small copayments and that has been a huge help. Things we have to pay are: large percentage of doctor visits (LLMD is out of network, needless to say), copays for lab tests or large percentage of some tests, supplements. We haven't had disposable income in quite a while -- it all goes to medical. Then again, we are getting better. From everything I have ever read or heard from reputable Lyme physicians (I do not include IDSA docs or docs who follow IDSA guidelines in that category), it takes MUCH longer than three-four weeks of Doxy to cure chronic Lyme or even Lyme that has set in for more than a little while. Unless you catch it pretty much immediately, that amount of antibiotics won't even touch the Lyme. I hope this will help you with your decision and planning. I am so sorry you and your family have to go through this. Yuck. Natasha > > > Ok now what if it costs over the $1000 that lymeaid provides. Will they > continue to pay for further treatment ? > > Tiffanie > > > > We only went to one appt so far and it cost $875.00 plus an additional > $350.00 for extra bloodwork. I filled out all the paperwork for lymeaid > months ago and sent them to Dr. office and never recieved any response > or any reimbursement. > > Wish I had better news for you!( sigh!!) > > Judy > > > ------------ --------- --------- ------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix. net/health/ lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl. com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 i hope you intend to use the $1000 for a true llmd,it will be a wasted on any other dr. it will definitely not cover his total treatment, you will know he is getting better because symptoms will alleviate over time. a knowledgeable llmd can give you a good idea on what to expect when your son is seen and his history/symptoms/tests are evaluated. On Thu, Jan 21, 2010 at 6:00 PM, Tiffanie <tiffanies_towing@...>wrote: > > > So the meds should be covered ? But have many follow up visits do we need ? > Do you think the $1000 would cover everything until he's better ? How do > they know if he's getting better ? ID tells me they dont run further tests/ > they consider him cured after the month course of Doxy, I think thats > ludicrous, do they check his levels periodically ? > > > > > > > > > Ok now what if it costs over the $1000 that lymeaid provides. Will they > > continue to pay for further treatment ? > > > > Tiffanie > > > > > > > > We only went to one appt so far and it cost $875.00 plus an additional > > $350.00 for extra bloodwork. I filled out all the paperwork for lymeaid > > months ago and sent them to Dr. office and never recieved any > response > > or any reimbursement. > > > > Wish I had better news for you!( sigh!!) > > > > Judy > > > > > > > > ------------------------------------ > > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Hi Judy, I am curious to hear about your son's psych symptoms. How old is your son and what is his story? We live in Oregon but see a CA doctor. My son is now 12 but began having problems 4 yrs ago. He's been treated for almost 1 yr now and currently the psych symptoms (anxiety, compulsive thoughts, loss of concentration) have gotten worse. He develops anxiety/ phobia-like toward a person or situation. He also tested + for Bartonella so our doc says the anxiety is probably mostly the Bartonella. He went off abx about 4 mths ago, while doing SO well, and regressed dramatically. Now he just can't pull back out of it. Anyway, I'm just curious how old your son is and what psych symptoms you are dealing with. I'm sorry that so many people are having to go through this but it's so nice to hear others' stories. thank you, Elaine ________________________________ From: jchabot <jchabot@...> Sent: Thu, January 21, 2010 11:57:00 AM Subject: Re: [ ] HI. I'M A NEW MEMBER My son goes to Dr. , and has been on antibiotics for about 3 1/2 months. We have seen an improvement with his physical symptoms , but none at all with his psychiatric symptoms.Any thoughts? Judy ____________ _________ _________ __ From: Hall <Jkathhallcomcast (DOT) net> Sent: Thu, January 21, 2010 2:26:13 PM Subject: RE: [ ] HI. I'M A NEW MEMBER Yes, Dr. D. is good, too, though he is not a pediatric specialist and I don't think (from what I've heard) he readily goes the IV route. Dr. is the best. He saved my son's life. The drive to Connecticut is not bad at all. Don't know where you are located, but I live in NH and it was just about three hours. I recently recommended two people to see him and their children are seeing results WITHIN WEEKS of getting on medication that was prescribed based on a thorough evaluation by Dr. J. Good luck, From: [mailto:Lyme_ Aid_Parents] On Behalf Of Tiffanie Sent: Thursday, January 21, 2010 2:18 PM Subject: RE: [ ] HI. I'M A NEW MEMBER No of course I dont think you are pushy. I really appreciate it. Right now I am trying to get pre authorization from my ins. co to go to Boston to Dr. Sam Donta..anyone hear of him. I will also try for lymeaid in the meantime. How much is a partial paymt ? > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 The book everything you need to know about lyme disease explains that the spirochetes (lyme bacteria) have to be killed when they are in their reproductive stage and it gives the example of strep throat which reproduces every couple hours or something so they can treat you for just a week and know that they have gottne them all but w/ lyme it reproduces every couple days so they really need to stretch out the abx treatment to get them,,, not sure if that made sense... check the book out at the library its very helpful also on dvd is " under our skin " a new documentary on lyme disease also the book cure unknown is good too. I'm not sure why lymeaid covered 1000$ for us and none for the other women who wrote in..I did include a long letter explaining our situation and why we needed the funds. Dr office is really good about things though... like you can call and tell them that you don't feel like the meds are working and sometimes he will tweak the prescription a little or order blood work over the phone that you can go to a lab near you and then its covered by your ins,,, and again you dont need the full amt up front either... hope this helps:) > > > Ok now what if it costs over the $1000 that lymeaid provides. Will they > continue to pay for further treatment ? > > Tiffanie > > > > We only went to one appt so far and it cost $875.00 plus an additional > $350.00 for extra bloodwork. I filled out all the paperwork for lymeaid > months ago and sent them to Dr. office and never recieved any response > or any reimbursement. > > Wish I had better news for you!( sigh!!) > > Judy > > > ------------ --------- --------- ------ Lyme Disease News continually updated from thousands of sources around the net: http://www.topix. net/health/ lyme-disease MedWorm: The latest items on: Lyme Disease http://tinyurl. com/23dgy8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 We restarted antibiotics (he's on 3 now) within 4 days of the regression but it just hasn't " kicked in " like it has the first go around. We also just started him on an antidepressant. Glad to hear your daughter is doing so well now! ________________________________ From: <InRNette@...> Sent: Thu, January 21, 2010 7:53:17 PM Subject: Re: [ ] HI. I'M A NEW MEMBER Get your son back on the antibiotics! She would do so well, and just about a week off the medicine she would tell me, " Mom, its not right, I am not over this, call the dr " ! We didn't want to put her back on them but she declined so rapidly! She has been off antibiotics for 2 1/2 years now and doing well! We did the start stop several times and finally ended up doing a pulse dose of antibiotics for a LONG time!!! The only long term lasting problem is short term memory problems and ADD. She is enrolled in a community college studying for her RN. Sent via BlackBerry from T-Mobile [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Our LLMD sais that the neuropsych issues will be the last to resolve BUT that as long as our daughter is still growing (which she is), she can grow completely out of those neuropsych symptoms -- she has been diagnosed with ADHD, auditory processing and sensory integration disorders and bipolar -- and most recently, with Lyme and multiple coinfections including Babesia, Bartonella and Erlichia. After 6 months I am seeing incremental changes in her cognitive stuff, organizational skills and physical coordination. I have to remind myself that as babies, humans get gross motor and big cognitive stuff and then fine motor and cognitive refinements, and that as she builds them it will be the same thing. So she won't be catcher on her softball team any time soon, but she remembered this week to put her social studies packet in the social studies section of her binder, she doesn't fall over when she stands on one leg any more, and she is less hyper overall and has her moods more in control. Pretty big steps. In treatment since August. It just started kicking in this month. What a long and tedious process, but when I see these glimmers I get so excited and delighted for her -- she's had a hard time in life and I am thrilled to imagine her getting better eventually. > > From: Tiffanie <tiffanies_towing> > > Subject: [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Tiffanie, There's the controversy. ID's think one month of anbx will kill everything and that is such a mistake. That is what the CDC tells them to do. It's in their big huge book of how to treat everything. My doctor showed it to me. The reason Lymes specialists know what they are doing is because most of them have had Lymes and that's why they do it. Spirochetes hide in tissues and organs where they are not exposed to the drug in the bloodstream. And they morph themselves into dormant and granular forms so to hide from the cephelasporine antibx that need a cell wall around the bacteria in order to kill it. I was told by a specialist that the active one's reproduce every 12 hours!!! Some people take their meds twice a day for that reason. I had a chronic case and I didn't feel " cured " until a minimum of 8 months of treatment and I did it for 13 months! I'm an adult. But my son took them for about a year and we stopped when all of his Lymes symptoms were gone. He did developed stomach issues (not a Lyme symptm) from the antbx that we treated after we stopped the antbx. Now he's still perfect 6 years later! It doesn't really do any good to check levels periodically because that is not how they determine if your cured. There's too many false negatives due to the fact that it's not a pos/neg kind of test. Your insurance should pay for the antbx. And your doctor should be ashamed not giving you a letter and you shouldn't need one to begin with. It's like you are a prisoner of your own health and body. Call and complain to your ins. co. Get the Lyme doctor to get your letter from someone else. That is so ridiculous. Suzanne On Jan 21, 2010, at 8:00 PM, Tiffanie wrote: > So the meds should be covered ? But have many follow up visits do we > need ? Do you think the $1000 would cover everything until he's > better ? How do they know if he's getting better ? ID tells me they > dont run further tests/ they consider him cured after the month > course of Doxy, I think thats ludicrous, do they check his levels > periodically ? > > > > > > > > > Ok now what if it costs over the $1000 that lymeaid provides. Will > they > > continue to pay for further treatment ? > > > > Tiffanie > > > > > > > > We only went to one appt so far and it cost $875.00 plus an > additional > > $350.00 for extra bloodwork. I filled out all the paperwork for > lymeaid > > months ago and sent them to Dr. office and never recieved > any response > > or any reimbursement. > > > > Wish I had better news for you!( sigh!!) > > > > Judy > > > > > > > > ------------------------------------ > > Lyme Disease News continually updated from thousands of sources > around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Get your son back on the antibiotics! She would do so well, and just about a week off the medicine she would tell me, " Mom, its not right, I am not over this, call the dr " ! We didn't want to put her back on them but she declined so rapidly! She has been off antibiotics for 2 1/2 years now and doing well! We did the start stop several times and finally ended up doing a pulse dose of antibiotics for a LONG time!!! The only long term lasting problem is short term memory problems and ADD. She is enrolled in a community college studying for her RN. Sent via BlackBerry from T-Mobile [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2010 Report Share Posted January 22, 2010 Judy: Be patient, it will improve. The Lyme bacteria is a deep tissue critter. It burrows its ugly self deep in the tissue. The antibiotic should be one that crosses the brain/blood barrier. If the antibiotic is not crossing the psych problems will be slower. Sent via BlackBerry from T-Mobile [ ] HI. I'M A NEW MEMBER > > > > Date: Tuesday, January 12, 2010, 9:26 PM > > > > > > > > > > > > My name is Tiffanie. I live on Long Island. My son > just turnrd 13. He fell back in Sept. playing football. He > complained for 4 days about his knee hurting. No swelling or > bruising. Dr. said just sprained/twisted. 4 days later it looked > like a balloon. It was HUGE !! Went to ER where they drained it and > called me next day saying he has Lyme. I was shocked. He never got > bit that I knew of. Went to infectious disease dr. and they said it > was late stage for him to develop knee arthritis. He had a spinal > tap. 7 times to get it right. Thank gos no meningitis or lyme in > cerebral fluis. They said there was trace amount which was a pass > through from the blood ?? So he didn't need a pickline (?). He was > on doxyxline for 2 days and back in hospital getting IV fluids from > violently throwing up and dehydration. Stopped Doxy for 2 wks then > started again. I'm sorry for rambling but I know nothing about this > disease just what I read online. Now his knee > > hurts again and is tiny bit swollen. I'll call I.D. in the am to > follow up. Will he always have this ? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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