Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 , Have you contacted the LDF, for a donation of $5 they will send you a list of doctors in your area that will treat Lyme disease? Here is the web site: http://www.lyme.org/index2.html Good luck, Marta ---> >i have been given several " lyme leads " to drs. in va and west va. i called >approx. 25 and only received " we are not accepting patients " , or " well yes i >am sure we can treat that ... yes we have seen a hand full in 5 years " . i >know of 0 in these states but if anyone can set this record straight please >post it!!! >an infectious disease specialist in roanoke, va told me i was experiencing > " lyme hysteria " and based upon my symptoms (thes lyme ones that is) i did >not have this disease (even though i had a positive western blot). > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 i can not imagine that they will give me a listing of ANY in my area. i have requested other " listings " and all begin OUTSIDE of VA. or when you actually call the listing, they have only seen 1 or 2 LD patients over the YEARS. it is a real problem here. actually the dr. in roanoke that told me i was a crazy woman was on the last " list " and SHE was a WOMAN (i had high hopes). >From: " J & M McCoy " <mlmccoy@...> > >, > Have you contacted the LDF, for a donation of $5 they will send you a >list of doctors in your area that will treat Lyme disease? >Here is the web site: > >http://www.lyme.org/index2.html > >Good luck, >Marta >---> >>i have been given several " lyme leads " to drs. in va and west va. i called >>approx. 25 and only received " we are not accepting patients " , or " well yes >i >>am sure we can treat that ... yes we have seen a hand full in 5 years " . i >>know of 0 in these states but if anyone can set this record straight please >>post it!!! >>an infectious disease specialist in roanoke, va told me i was experiencing >> " lyme hysteria " and based upon my symptoms (thes lyme ones that is) i did >>not have this disease (even though i had a positive western blot). >> >> >> > > >------------------------------------------------------------------------ >ONElist members are using Shared Files in great ways! > >Are you? If not, see our homepage for details. >------------------------------------------------------------------------ >Please send privately messages unrelated to lyme. >/archives.cgi/ >/archives.cgi/Lyme-Docs >Email: -subscribeonelist >You may substitute " unsubscribe " , " digest " , or " normal " for >the word " subscribe " ( " normal " is the opposite of " digest " ) > > MimiAnne's Specialty Coffee (540) 980-6464 93 W. Main Street Pulaski, VA 24301 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 does anyone know of a really active CFS listserv for a friend of mine? thanks MimiAnne's Specialty Coffee (540) 980-6464 93 W. Main Street Pulaski, VA 24301 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 Yes, I do. Really. But is she sure she has CFS and not Lyme (misdiagnosed as CFS)? Try this newsgroup: Alt.med.cfs and this website: <A HREF= " http://www.cfids-me.org/ " >CFIDS, M.E., and Chronic Fatigue Syndrome Inf... </A> In a message dated 5/14/99 11:11:54 AM Eastern Daylight Time, mimianne@... writes: > does anyone know of a really active CFS listserv for a friend of mine? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 1999 Report Share Posted May 14, 1999 , Have you checked out this web page: http://www.geocities.com/HotSprings/Spa/6772/virginia-index.html These are articles about Lyme reported in Virginia put together by Art Doherty. I hope this helps some. I also found this one: http://www.geocities.com/HotSprings/Spa/6772/virginia-patients.txt Which is a list of support groups in VA, as well as people with Lyme disease that you may be able to contact for advice. Let me know if you get help here. Hopefully, Marta -- >From: mimianne@... > >i can not imagine that they will give me a listing of ANY in my area. i >have requested other " listings " and all begin OUTSIDE of VA. or when you >actually call the listing, they have only seen 1 or 2 LD patients over the >YEARS. it is a real problem here. actually the dr. in roanoke that told me >i was a crazy woman was on the last " list " and SHE was a WOMAN (i had high >hopes). > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 : Is the woman you are referring to a Pruett? If so I will take her off my list & tell Art to get her off his, too.... In a message dated 5/15/99 9:16:02 AM Eastern Daylight Time, mimianne@... writes: > yes, i have called one chick in Roanoke that is on the support list. her > husband almost cussed me out! they have wanted to be removed for YEARS. i > begged then for a dr. name, it was a BIG deadend and the rudest clinic i > have spoken to as of yet. VERY BAD result from that. Art's stuff is > EXCELLENT! honestly i had no luck w/the va. info. i have to go back and > look at it and see what is listed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 yes, i have called one chick in Roanoke that is on the support list. her husband almost cussed me out! they have wanted to be removed for YEARS. i begged then for a dr. name, it was a BIG deadend and the rudest clinic i have spoken to as of yet. VERY BAD result from that. Art's stuff is EXCELLENT! honestly i had no luck w/the va. info. i have to go back and look at it and see what is listed. but thank you for the help, you are a great researcher! >From: " J & M McCoy " <mlmccoy@...> > >, > Have you checked out this web page: > >http://www.geocities.com/HotSprings/Spa/6772/virginia-index.html > >These are articles about Lyme reported in Virginia put together by Art >Doherty. I hope this helps some. > >I also found this one: >http://www.geocities.com/HotSprings/Spa/6772/virginia-patients.txt > >Which is a list of support groups in VA, as well as people with Lyme disease >that you may be able to contact for advice. Let me know if you get help >here. > >Hopefully, >Marta > >-- > >>From: mimianne@... >> >>i can not imagine that they will give me a listing of ANY in my area. i >>have requested other " listings " and all begin OUTSIDE of VA. or when you >>actually call the listing, they have only seen 1 or 2 LD patients over the >>YEARS. it is a real problem here. actually the dr. in roanoke that told >me >>i was a crazy woman was on the last " list " and SHE was a WOMAN (i had high >>hopes). >> > > >------------------------------------------------------------------------ >Congratulations to " Trail Rider, " our latest ONElist of the Week. >http://www.ONElist.com >Visit our homepage and share with us how ONElist is changing YOUR life! >------------------------------------------------------------------------ >Please send privately messages unrelated to lyme. >/archives.cgi/ >/archives.cgi/Lyme-Docs >Email: -subscribeonelist >You may substitute " unsubscribe " , " digest " , or " normal " for >the word " subscribe " ( " normal " is the opposite of " digest " ) > > MimiAnne's Specialty Coffee (540) 980-6464 93 W. Main Street Pulaski, VA 24301 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 she has been tested for lyme ... but we know what crock tests are. she does not seem to have the LD symptoms but has some. i hope she will better pinpoint her illness from getting involved in a listserv. thanks a bunch!! >From: FIG4159@... > >Yes, I do. Really. But is she sure she has CFS and not Lyme (misdiagnosed as >CFS)? > >Try this newsgroup: >Alt.med.cfs > >and this website: ><A HREF= " http://www.cfids-me.org/ " >CFIDS, M.E., and Chronic Fatigue Syndrome >Inf... ></A> > > > >In a message dated 5/14/99 11:11:54 AM Eastern Daylight Time, >mimianne@... writes: >> does anyone know of a really active CFS listserv for a friend of mine? > >------------------------------------------------------------------------ >ONElist members are using Shared Files in great ways! > >Are you? If not, see our homepage for details. >------------------------------------------------------------------------ >Please send privately messages unrelated to lyme. >/archives.cgi/ >/archives.cgi/Lyme-Docs >Email: -subscribeonelist >You may substitute " unsubscribe " , " digest " , or " normal " for >the word " subscribe " ( " normal " is the opposite of " digest " ) > > MimiAnne's Specialty Coffee (540) 980-6464 93 W. Main Street Pulaski, VA 24301 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Must know if there is any cost involved in subscribing. Please advise ASAP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 dear onelist, please answer.. is one list FREE or is cost involved? must know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Thank you . Am new to net and have been cautioned by daughter. sorry for paranoia.Iam SO appreciative of place to learn/share info re: lyme dab Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 to this list ......nope none nada.......it is free......we all work cheap....lol......welcome to our warm and loving very smart little group...... Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Thanks for the welcome, I have been having a hard time lately...Have chronic, relapsing lyme. First bitten in 70's and tx for " tick bite fever " later dx with MS...bitten again in 89 finally dx lyme in 94. Found a LLMD and have been getting better slowly but crashed in march WHILE on hi dose oral abx. Am on 2nd week IV rocephin plus oral and feel so sick. Insur co. is also giving me impossible time. All those years thinking I had MS were a nightmare. All those doctors who DX everything wrong..esp a Dr. schoen at YNNH.... total nightmare Has anyone ever heard of relapsing WHILE on abx??? Not to be dramatic, but sometimes I think I might die I feel so sick would appreciate help, info. etc.....Thanks....dabs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Hi, There is no fee of any kind related to this email list, or any list on the Onelist website. We offer free advice, free support, and free humor when someone finds something that tickles their fancy. Most of us who subscribe to Lyme-aid are afflicted with Lyme disease, and we often share our experiences and exchange information about what works for us. I hope you will participate in the list by telling us your Lyme story, welcome to the list. Marta >From: Dabret22@... > > Must know if there is any cost involved in subscribing. Please advise ASAP > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 1999 Report Share Posted June 23, 1999 Welcome dab ... we're just here to share and listen and laugh and cry. (Hopefully more laughing than crying.) Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Hi Dabs, I'm new to this list too. when I read your story I could relate completely. I was dx with myasthenia gravis in 93, then MS in 95 and finally found a llmd through a man who has lyme and who has gone to great effort to raise public awareness in our town. I was put on 300mg doxycycline and 1000mg biaxin for almost 2 years. After the first few months I started to feel a bit better, and did well for another year, but slowly the sx returned, until I realized I was having a major relapse. I stopped taking the abx, since they weren't helping. My doctor wouldn't change direction, and I finally found a local md, who my lyme friend had told me about. After convincing him that I don't have MS, he agreed to treat me with 12 weeks rocephin IV. 11 days into the treatment I had a huge herxheimer and this lasted a couple of weeks. At 6 weeks into the treatment it happened again. This one was so bad I really felt I could die. I know what you are going through. I was so weak, I couldn't talk. I couldn't call anyone on the phone. Couldn'lt use the computer, or even get out of bed, eat or do anything. It's a good thing you had the oral treatment first. I have always thought it is better to start slow when one is so full of lyme. Did you have steroids too, when you were dx w/ MS? That makes it even worse. I did. I pray God will carry you through this. Do you have kids? Can they help? I will pray for you. I just ended the therapy and am actually feeling better, even though I still don't have my strength back. Talk to your doctor too. If the herx is too severe, maybe he/she can adjust your treatment temporarily. best wishes, Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Welcome Dabs, Thanks for sharing your story, and it sure is a tough one to hear. Lots of people on this list have been misdiagnosed with MS and other diseases as well. Sorry it took so long for you to get the proper treatment you need. I was fortunate as I vividly recall finding my tick in my head, and I was actually feeling pretty lousy before hand, yet, even with the bulls eye rash and all the clinical symptoms, I have had doctors tell me that that was just coincidental and I had something else. My bite is more recent (1996) and there was much more information available about Lyme disease and other tick diseases and I soon learned I knew more about this illness than most of the doctors I saw. I see you went to the notorious Dr Schoen, he is on our " Doctors never to see List " I am sure you can figure out why now that you have come in contact with the jerk. What kind of problem is your insurance company giving you? Lovette gave you excellent information about why you are feeling much worse while on antibiotics, I also sent you a more detailed essay about Herxing via private mail. I am surprised your doctor did not mention this to you. There are many great books available about Lyme disease, I would recommend you go to your local library and check out Forschner's " Everything you need to know about Lyme disease and other tick-borne diseases " It is chock full of information you really need to know. Glad you made it to our list, I hope you start to feel better really soon, Hugs, Marta >From: Dabret22@... > >Thanks for the welcome, >I have been having a hard time lately...Have chronic, relapsing lyme. First >bitten in 70's and tx for " tick bite fever " later dx with MS...bitten again >in 89 finally dx lyme in 94. Found a LLMD and have been getting better >slowly but crashed in march WHILE on hi dose oral abx. Am on 2nd week IV >rocephin plus oral and feel so sick. Insur co. is also giving me impossible >time. >All those years thinking I had MS were a nightmare. >All those doctors who DX everything wrong..esp a Dr. schoen at YNNH.... >total nightmare >Has anyone ever heard of relapsing WHILE on abx??? >Not to be dramatic, but sometimes I think I might die I feel so sick >would appreciate help, info. etc.....Thanks....dabs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 In a message dated 6/23/99 4:09:40 PM Eastern Daylight Time, Dabret22@... writes: << Thank you . Am new to net and have been cautioned by daughter. sorry for paranoia.Iam SO appreciative of place to learn/share info re: lyme dab >> Hi Dab! I understand and don't blame you for your paranoia! I tried to join a couple of " so-called " support groups through the e-groups service and one of them wanted to charge me money for joining a FREE service. It's always good to question. Answers and explanations are freely part of this wonderful support group. Welcome. , New Bedford, MA. <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A> ICQ # 26791014 Need a new FREE E-mail Address: www.phlexmail.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Marta, I appreciate your including me in your list, but I can't deal with all the email, and would appreciate your removing me. I don't know where I filed the password, and therefore can't figure out how to unsubscribe. Would you please let me know - and unsubscribe me if you can? I sent to the address to unsubscribe and they returned it as a fatal error. I'm going out of town and do NOT want to come home to 200 emails! Thank you, and good luck. Candy Sandford Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Thanks for reassurance. Actually, LLMD told me about herx. last time in 94 and I knew to expect it but forgot how bad it could be. By the way, I told my IV nurse I thought I was having a Herx. and she had never HEARD of it........Also says she has no experience with Lyme.......No kidding!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 GOV.... OF COURSE I was given steroids when dx with MS.........But kept running a feverand ALWAYS felt better on days I went to the Dentist and had to take a handful of profilactic ammoxicillin......HMMMMMMM....Neuro did WB and guess what???? gave my w/c to goodwill 2 mo after started tx. for lyme in 94..... although feel as if I could use it now. Thanks for prayers......2 girls,one a teacher in Fla. one moving to San Fran. soon. Husband is very supportive but terrified of IV Dabs in conn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 Dear Marta, I am overwhelmed by the warmpth and support I have rec. since joining lyme-aid.....I had forgotten about herx. and now realize I am not dieing...but I really thought I might.. did a wlll update and everything...Husband is great, but doesn't really get itHow long does a herx. last??? HAS anybody died from lyme or herx?? Dabs conn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 schoen.......nuff said Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 dabs .....just feels like ur dying from herx.......or sometimes u wish u would die while herxing.......i am attatching a great article on spirochettes that u and ur hubby may be interested in Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 1999 Report Share Posted June 25, 1999 Dear RMc, you are right, of course. Now I feel like an idiot, but was just soooooo sick. I am not computer literate and either didnt GET article you sent me, or lost it or don't know how to access it. Would you please E mail me directly at dabret22@... ? I definitely want to read article thanks, Dabs Quote Link to comment Share on other sites More sharing options...
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