Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 In a message dated 00-03-08 09:15:14 EST, you write: << From: " Vicki Ferraro " <ferraroa@...> Can someone give me the url to sign up for aol IM, I deleted it,and finally came up with a name. Thanks Vicki >> Dear Vicki, Here it is! <A HREF= " http://www.newaol.com/aim/friend.html " >AOL Instant Messenger</A> http://www.newaol.com/aim/friend.html Hope to see your name added to the list. Blessings & velcros, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2000 Report Share Posted March 8, 2000 In a message dated 00-03-08 09:15:14 EST, you write: << From: " Vicki Ferraro " <ferraroa@...> Can someone give me the url to sign up for aol IM, I deleted it,and finally came up with a name. Thanks Vicki >> Dear Vicki, Here it is! <A HREF= " http://www.newaol.com/aim/friend.html " >AOL Instant Messenger</A> http://www.newaol.com/aim/friend.html Hope to see your name added to the list. Blessings & velcros, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 Pepi, I tried to get this out of the Lyme archives, but darn site is acting up, very slow, if no one sends it to you by tomorrow, write me again and I will try the archives again, hopefully they will be working better. Hugs, Marta >From: " Pepi " <rod@...> > >Howdy there, would somebody e-mail me the letter we got a few days ago >talking about Dr S in mass, and what we need to do? My LLMD wants a copy >and I have erased my mail. Thanks! Pepi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2000 Report Share Posted March 10, 2000 Pepi, I tried to get this out of the Lyme archives, but darn site is acting up, very slow, if no one sends it to you by tomorrow, write me again and I will try the archives again, hopefully they will be working better. Hugs, Marta >From: " Pepi " <rod@...> > >Howdy there, would somebody e-mail me the letter we got a few days ago >talking about Dr S in mass, and what we need to do? My LLMD wants a copy >and I have erased my mail. Thanks! Pepi > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Hello from England, God this disease is foul. I feel thoroughly toxic every morning now. Eating food and moving around a little is the only thing that helps. I also get a little jaundiced every few weeks for a few hours. The pain seems to move around from organ to organ as if it has a mind of its own. I phoned the specialists office and was told most of my tests seem to be negative but they are still waiting for the Western Blot. I don't know what they will try next, perhaps nothing. I have a feeling they may suggest a spinal tap. Can anyone tell me what this is like nowadays. I have traumatic memories of a botched one when I was a small child. Are they usually positive? Are they painful? Are there after effects? Sorry about all the questions. It must be great to have so many colleagues together in one albeit large nation. I feel so isolated here. I think friends and family are getting pretty sick of hearing my troubles so I keep them to myself now. I wish all of you great success at Gettysburg and will be with you in spirit if not in body. You will be representatives of a huge silent group of us who are by nature of their health, unable to make their existence evident. I am so glad you will be able to get there and wish you good luck. My ICQ is 65792268 if anyone wants to connect with England, or if any 'lymies' in England want a chat. Take care sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2000 Report Share Posted March 11, 2000 Hello from England, God this disease is foul. I feel thoroughly toxic every morning now. Eating food and moving around a little is the only thing that helps. I also get a little jaundiced every few weeks for a few hours. The pain seems to move around from organ to organ as if it has a mind of its own. I phoned the specialists office and was told most of my tests seem to be negative but they are still waiting for the Western Blot. I don't know what they will try next, perhaps nothing. I have a feeling they may suggest a spinal tap. Can anyone tell me what this is like nowadays. I have traumatic memories of a botched one when I was a small child. Are they usually positive? Are they painful? Are there after effects? Sorry about all the questions. It must be great to have so many colleagues together in one albeit large nation. I feel so isolated here. I think friends and family are getting pretty sick of hearing my troubles so I keep them to myself now. I wish all of you great success at Gettysburg and will be with you in spirit if not in body. You will be representatives of a huge silent group of us who are by nature of their health, unable to make their existence evident. I am so glad you will be able to get there and wish you good luck. My ICQ is 65792268 if anyone wants to connect with England, or if any 'lymies' in England want a chat. Take care sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Hello Marta, excellent idea - thanks sheila Re: [ ] Re: THANKS >From: " Marta McCoy " <mlmccoy@...> > >Hi Sheila, > You are very fortunate to have such a loving and supportive mate, tell >him we on this list appreciate him too. I wonder if you could find some >information at Art Doherty's pages regarding seronegativity and LD. Try >looking here: >http://www.geocities.com/HotSprings/Spa/6772/resources.html >Also, since you mention NO TREATMENT at all in 22 years, could you possibly >convince your doctor to put you on antibiotics, maybe doxycycline 300-400 mg >a day, to see if you have the dreaded herx reaction you read about on this >list. That would be a clear indication that you are dealing with a >bacterial cause to your complaints. Give it a try, can't hurt. >Hugs, >Marta > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Sheila, I can't remember if I sent these to you. Did you get my other email with all the other links? These may be duplicates, but thought you should definitely see the one " Nine reasons for false negatives.. " . Good luck. Vicki >From: " Sheila Darbyshire " <sheila-e@...> > >Hello Marta, >excellent idea - thanks >sheila > >>Hi Sheila, >> ....I wonder if you could find some information at Art Doherty's pages regarding seronegativity and LD. Try looking here: >>http://www.geocities.com/HotSprings/Spa/6772/resources.html >>Also, since you mention NO TREATMENT at all in 22 years, could you possibly >>convince your doctor to put you on antibiotics, maybe doxycycline 300-400 >mg a day, to see if you have the dreaded herx reaction you read about on this >>list. That would be a clear indication that you are dealing with a >>bacterial cause to your complaints. Give it a try, can't hurt. >>Hugs, >>Marta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Hello Marta, excellent idea - thanks sheila Re: [ ] Re: THANKS >From: " Marta McCoy " <mlmccoy@...> > >Hi Sheila, > You are very fortunate to have such a loving and supportive mate, tell >him we on this list appreciate him too. I wonder if you could find some >information at Art Doherty's pages regarding seronegativity and LD. Try >looking here: >http://www.geocities.com/HotSprings/Spa/6772/resources.html >Also, since you mention NO TREATMENT at all in 22 years, could you possibly >convince your doctor to put you on antibiotics, maybe doxycycline 300-400 mg >a day, to see if you have the dreaded herx reaction you read about on this >list. That would be a clear indication that you are dealing with a >bacterial cause to your complaints. Give it a try, can't hurt. >Hugs, >Marta > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Sheila, I can't remember if I sent these to you. Did you get my other email with all the other links? These may be duplicates, but thought you should definitely see the one " Nine reasons for false negatives.. " . Good luck. Vicki >From: " Sheila Darbyshire " <sheila-e@...> > >Hello Marta, >excellent idea - thanks >sheila > >>Hi Sheila, >> ....I wonder if you could find some information at Art Doherty's pages regarding seronegativity and LD. Try looking here: >>http://www.geocities.com/HotSprings/Spa/6772/resources.html >>Also, since you mention NO TREATMENT at all in 22 years, could you possibly >>convince your doctor to put you on antibiotics, maybe doxycycline 300-400 >mg a day, to see if you have the dreaded herx reaction you read about on this >>list. That would be a clear indication that you are dealing with a >>bacterial cause to your complaints. Give it a try, can't hurt. >>Hugs, >>Marta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Hello All Terrific to hear how the Gettysburg rally went. I wish I could have been there to share it with you. What gorgeous doctors you all had to speak at the meetings. I'm glad to hear you got good press coverage it should make a difference. sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 sheila ....wish u could have been there to.....u were mentioned not by name but that we had members of lyme aid all over america and in england and france......we also announced at the rally that ribbon tieing day will be may 1.......so everyone get ur friends and family ....buy the green ribbon and tie it to everything that does not move and a few things that do like ur car antenna or such......so quite today guess we are all sleeping off the trip and rally........ Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Hello All Terrific to hear how the Gettysburg rally went. I wish I could have been there to share it with you. What gorgeous doctors you all had to speak at the meetings. I'm glad to hear you got good press coverage it should make a difference. sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 sheila ....wish u could have been there to.....u were mentioned not by name but that we had members of lyme aid all over america and in england and france......we also announced at the rally that ribbon tieing day will be may 1.......so everyone get ur friends and family ....buy the green ribbon and tie it to everything that does not move and a few things that do like ur car antenna or such......so quite today guess we are all sleeping off the trip and rally........ Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Hi , I was also glad to meet your father and realize how much he learned, so maybe now he'll be a little more supportive of you. It was wonderful to meet you - you are a hunk, if I wasn't married and you were 10 years older, you'd be in big trouble! So glad you made it. It really was a coming together of family. All the hugs were so great, but so hard to stop. It was hard to leave, but leaving early was good for us, sleeping in my own bed that night, I slept like a baby. But today I'm feeling the pain. I think in a few days I'll recover. Talk to you soon. Hugs, and TOFU.....!Vicki >Amen Vicki. Lovette you and your husband ere the best!! The tavern had >excellent food and i met my old friends :-). The only problem was that it was >so hard to leave everyone :-(. Well thanks again to Lovette and everyone >else. TOFU!!!!!!!!!!!!!!!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 i agree marta......when we went to breakfast with our shirts we kinda got a look to..... oh well we shall keep battling......as for scott......my girls made a new buddie.....he is a great kid i am so glad that he was there....after dinner i was trying to crash a little....he knew they were leaving early so he knocked to make sure he said good bye.....and told me if they ever come up with a program that can slap him into line over the net i will be the first to get it......gary scotts dad and i spent the time walking to and from the rally talking he also ate with us as scott gave him the bums ruch to hang out with the mgh people.....h ecommented that the powers that be work in mysterious ways...as his wife got sick and he brought scott.....and he came away from the weekend with a much greater understanding of lyme and people with it..... and how we truly are family.....and how many older bros and sisters or step-parents scott has.....all lymies.....it was a pleasure to be around all of u.....my arms still hurt from hugs and my lips will never be the same after all the kissing.......( nice sign rite girls)....all in all...a high point of my life......the girls teachers and friends were amazed when des and tina told them about the weekend....and tina took in a ribbon pin for her student teachers mom who is one of us.......kids are never to young i believe t learn to speak out about injustice....and heaing my 2 yell TOFU at the rally made me proud......god bless u all Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Hi Vicki and , I agree, is a cutie. and I really enjoyed talking to his Dad, too. I am sure any non-Lymie who attended this rally and the events came away with a new understanding of how we suffer, not just physically, but emotionally as well. Not only do we have the pain of this disease, but we have such a stigma. I have to mention that when some of us went to breakfast Saturday morning, we went to a diner nearby the motel. A waitress came up to us, noted our badges and asked why we were in town, we told her we were there for the Lyme disease rally, she said, and I will leave out the name of the patient she knows. " Oh so and so is a friend of mine, she's into that Lyme stuff " Those of us at the table just looked at each other with disbelief! I thought one was into antique cars, beanie babies, collecting dolls, stamps etc. Never dreamed that someone was " into " a serious disease. But that is the mind set of the public at large, they just do not understand what suffering we experience. Bev G. from Michigan was one of the speakers at the rally. She told how she had cancer in the 80's, one year of chemo, finally found out she did not have it....what a difference she experienced between cancer and Lyme, she received hugs and prayers from friends and family, not so with Lyme disease. We have a huge stigma to overcome, we will only do that with more rallies like the one in G-burg, MOW and the ribbon ties on May 1st., we must educate the public through the media and somehow shut up those horrible doctors who work for insurance companies. We sure have a long way to go to meet these goals. Hugs, Marta -From: Vicki Ferraro <ferraroa@...> Hi , I was also glad to meet your father and realize how much he learned, so maybe now he'll be a little more supportive of you. It was wonderful to meet you - you are a hunk, if I wasn't married and you were 10 years older, you'd be in big trouble! So glad you made it. It really was a coming together of family. All the hugs were so great, but so hard to stop. It was hard to leave, but leaving early was good for us, sleeping in my own bed that night, I slept like a baby. But today I'm feeling the pain. I think in a few days I'll recover. Talk to you soon. Hugs, and TOFU.....!Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Emma No word, but tonight we can add him to our prayer wheel - Marta and her family, and Helen, and I know I'm forgetting someone, so I'll just plan to name as many as I can and then just include all the Lymies and their families. I'll let you know if I hear anything. But Rose promised to let us know, I just hope everything went well. So worried about him too. Vicki, MD Does anyone have any news about is doing? Haven't seen anything lately and am continuing to keep him in my prayers as I do all of us. Any info would be appreciated. Thanks for sharing your trip with those of us unable to make it. Sounds like you all really did a great job. Look forward to reading more about it. Much appreciation for all your work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 Hi Everyone,Sorry I couldn't let you know what was happening yesterday. We had bad thunderstorms late afternoon & evening. Computer crashes, had to reinstall Windows, then had problems getting both computers up. Then the weather got REALLY bad, and we unplugged everything overnight. Sorry for the extra worry time. Thanks to all for thinking of us. Love Y'all,Rose Vicki Ferraro <ferraroa@...> wrote: Emma No word, but tonight we can add him to our prayer wheel - Marta and her family, and Helen, and I know I'm forgetting someone, so I'll just plan to name as many as I can and then just include all the Lymies and their families. I'll let you know if I hear anything. But Rose promised to let us know, I just hope everything went well. So worried about him too. Vicki, MD Does anyone have any news about is doing? Haven't seen anything lately and am continuing to keep him in my prayers as I do all of us. Any info would be appreciated. Thanks for sharing your trip with those of us unable to make it. Sounds like you all really did a great job. Look forward to reading more about it. Much appreciation for all your work. Send to -Offtopiconelist messages unrelated to Lyme, please.Archives can be found at:/group/lyme-aid. They are filed by month, pick a month and search those archives for subjects you are interested.Lyme chat, go to this URL:/chat/lyme-aidShould you have trouble opening the page, go back to / and make sure you are registered with a password. You can ask ONELIST to remember you, and will only have to do this one time.To unsubscribe, send email to -unsubscribeonelistYou may substitute "subscribe", or "digest" or "normal" forthe word "unsubscribe" ("normal" is the opposite of "digest"). Leave blank both the message and subject header. The "RoseWriter" says: "Teach Tolerance, Overcome Ignorance, Advocate Lyme Literacy." See http://www.angelfire.com/tx3/RoseWriter/ or http://www.angelfire.com/biz/romarkaraoke/james.html for our Lyme Disease Horror Stories, links to LD research articles & websites, & current news items on Lyme. These sites are updated frequently, so please revisit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2000 Report Share Posted April 25, 2000 Re: [Lyme-aid] Diagnose MS 4 years ago now equivocal WB >Many of us also suffer from rib pain, there is a name for it, and darned if >I can recall it, but x-rays will never show anything, it is an inflammation >of the rib tissues. Marta I think the missing word is costochondritis (spelling?) sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Re: [ ] Diagnose MS 4 years ago now equivocal WB >Many of us also suffer from rib pain, there is a name for it, and darned if >I can recall it, but x-rays will never show anything, it is an inflammation >of the rib tissues. Marta I think the missing word is costochondritis (spelling?) sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Hi Pepi, Your kids are gorgeous, what a shame all will not be able to see them as digest won't permit attachments. I would love to see pictures of your human kids if you could share. Hugs, Marta -From: Pepi <rod@...> lyme-aidegroups <lyme-aidegroups> >Here are 2 of my 'children' Dallas is on left and Belle Starr on right, >Belle has spodilosis in her back, but is doing OK on Rimadyl. Pepi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Howdy Marta, thank you! But these are my kids, no human ones, well maybe, but he's 34 (hubby) Pepi > Hi Pepi, > Your kids are gorgeous, what a shame all will not be able to see them as > digest won't permit attachments. I would love to see pictures of your human > kids if you could share. > Hugs, > Marta > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Hi Pepi, Your kids are gorgeous, what a shame all will not be able to see them as digest won't permit attachments. I would love to see pictures of your human kids if you could share. Hugs, Marta -From: Pepi <rod@...> lyme-aidegroups <lyme-aidegroups> >Here are 2 of my 'children' Dallas is on left and Belle Starr on right, >Belle has spodilosis in her back, but is doing OK on Rimadyl. Pepi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2000 Report Share Posted April 26, 2000 Howdy Marta, thank you! But these are my kids, no human ones, well maybe, but he's 34 (hubby) Pepi > Hi Pepi, > Your kids are gorgeous, what a shame all will not be able to see them as > digest won't permit attachments. I would love to see pictures of your human > kids if you could share. > Hugs, > Marta > > Quote Link to comment Share on other sites More sharing options...
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