Guest guest Report post Posted June 8, 1999 --- LymeDizzez@... wrote: > From: LymeDizzez@... > > Hi. My name is and I live in New Bedford, > Massachusetts. I have been > tentatively diagnosed with Lyme Disease (process of > elimination right now). > We aren't sure because my neurologist says that I > may have a Dormant strain > that will not show up positive until six weeks after > the first symptoms show. > I'm in my third week of hell and I have been left > looking and feeling as if > I'd just had a stroke. No one out here is sure what > to do with me. Lyme > disease is not prominent here. I've been struggling > with emergency rooms, > pain killers, hospital stays, antibiotics, > prednisone and blatant disbelief > in my pain and agony. > Sorry. I didn't mean to ramble but it's such a > relief to find all of you. > > > ICQ #26791014 - Welcome to our list. Sounds like you are getting the typical runaround that all of us Lymies get when trying to get a diagnosis and treatment. We are also told here in MI that Lyme does not exisit here. But I have not been out of the state for 2 years and have Lyme. Had the rash last July and got progressivly worse since then. Also if you see how many on this post are from MI you will see that it does exisit here and I m sure it exists wherever there are hosts for the ticks. The biggest thing is to get yourself in to a good Lyme Literate doc and dont let anyone else tell you that Lyme is not a real threat. This group is wonderful and we are all here for each other. I have had a real lifeline in this group and am so grateful to have this kind of support and understanding. Feel free to ask questions and vent if you need to. L> ------------------------------------------------------------------------ > ONElist: where real people with real interests get > connected. > > Join a new list today! > ------------------------------------------------------------------------ > 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 " ) > _________________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 1999 --- LymeDizzez@... wrote: > From: LymeDizzez@... > > In a message dated 6/8/99 10:17:54 AM Eastern > Daylight Time, lclott@... > writes: > > << Welcome to our list. Sounds like you are getting > the typical runaround > that all of us Lymies >> > > LOL, I love the name, Lymies. I've started a > separated buddy list and I > called it Lymies. I've already taken steps to find > some kind of specialist > here. I'm waiting. > > , New Bedford, MA > <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme > Disease and Me</A> > ICQ # 26791014 > > - I had ICQ for awhile and now cant get it back up and running. Any ideas? I loved it but cant get it going. L P.S. If you could e mail me privately with any ideas that would be great!------------------------------------------------------------------------ > How many communities do you think join ONElist each > week? > > More than 5,000! Create yours now! > ------------------------------------------------------------------------ > 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 " ) > _________________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 1999 , If you are on prednisone (a steroid) you need to get off it now. Steroids work by surpressing the immune system. They will make your symptoms WORSE, not better. Please make every effort to contact a Lyme-literate physician immediately. My mother died because she was diagnosed with MS and given steroids instead of antibiotics for Lyme, which she really had. Don't mean to scare you.... well, maybe I do mean to scare you. I'm attaching a document in MS Word that you might find useful -- it's the standard treatment protocol for Lyme. If you can't detach it or print it out, I can fax it or snail mail it to you. Jean Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 1999 In a message dated 6/8/99 2:31:41 PM Eastern Daylight Time, Namkrats3@... writes: << I'm curious to know what you are taking and how your Lyme blood tests came out. >> So far, all tests for Lyme Disease have come back negative and I am told this is due to two reasons: the first is because it might not show up while I am on the antibiotic (rocephin) and second because the neurologist feels that I may have a dormant strain that doesn't show positive until six weeks after the first symptoms. , New Bedford, MA <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A> ICQ # 26791014 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 1999 Hi , Welcome! Your symptoms are almost identical to mine. They have ruled out everything else but Lyme Disease in my case. You seem to be on the right track since you have found a Dr. to put you on IV abx. I'm curious to know what you are taking and how your Lyme blood tests came out. Good Luck, Joan Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 9, 1999 In a message dated 6/9/99 3:39:20 AM Eastern Daylight Time, jscully@... writes: << Don't mean to scare you.... well, maybe I do mean to scare you. >> OK, LOL, you've scared me. But I was on strong steroids in the hospital and the home dosage was such a drastic change that I spent Sunday morning in the emergency room in excruciating pain due to the dosage difference. I won't just drop off this. It hurts way too much. I'm being tapered off of it and I think I'll stick to that for a bit. I was given steroid originally because they thought it was Multiple Sclerosis. Now I am in the process of being weaned off it. Thanks , New Bedford, MA <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A> ICQ # 26791014 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 9, 1999 Thanks for posting this I was confused if is still on prednisone or not, I thought maybe she meant to write she wasn't on it now....I hope she takes the Burrascano protocol to her doctor. Hugs, Marta >, >If you are on prednisone (a steroid) you need to >get off it now. Steroids work by surpressing the >immune system. They will make your symptoms WORSE, >not better. Please make every effort to contact a >Lyme-literate physician immediately. My mother >died because she was diagnosed with MS and given >steroids instead of antibiotics for Lyme, which >she really had. Don't mean to scare you.... well, >maybe I do mean to scare you. >I'm attaching a document in MS Word that you might >find useful -- it's the standard treatment >protocol for Lyme. If you can't detach it or print >it out, I can fax it or snail mail it to you. > >Jean > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 1999 In a message dated 6/10/99 12:44:32 AM Eastern Daylight Time, byrd@... writes: << You do not have ticks inside your body you have small bacteria lurking around in there. >> Whew! This is all so nerve wracking enough, LOL. I have found a doctor who is more knowleageale (I am told) regarding Lyme Disease than any other physician in Mass. I found a Lyme Support group in Fall River and that's where I got the name from. He's on the Cape which is only an hour from me. I've already called my regular doc and made him schedule me an appointment. I am learning everyday that I am NOT the only one in my area. It seems it is simply not discussed because there are no definitive answers. I'll be honest, I'd heard of Lyme Disease, but I had no idea of the damage it caused nor the pain and suffering it brings. I am guilty of not being aware until it's too late. , New Bedford, MA. <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A> ICQ # 26791014 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 1999 , Lyme Disease is VERY prominet in that area, I know 6 people from the surrounding area of Fall River, Newport and Narragansett area. See: Dr. Reardon East Greenich, RI (Old Post Rd) (401) 884-2229 Smiles & Russ PS, You do not have ticks inside your body you have small bacteria lurking around in there. ---------- > From: LymeDizzez@... > lyme-aidonelist > Subject: [Lyme-aid] Hello > Date: Tuesday, June 08, 1999 3:08 AM > > From: LymeDizzez@... > > Hi. My name is and I live in New Bedford, Massachusetts. I have been > tentatively diagnosed with Lyme Disease (process of elimination right now). > We aren't sure because my neurologist says that I may have a Dormant strain > that will not show up positive until six weeks after the first symptoms show. > I'm in my third week of hell and I have been left looking and feeling as if > I'd just had a stroke. No one out here is sure what to do with me. Lyme > disease is not prominent here. I've been struggling with emergency rooms, > pain killers, hospital stays, antibiotics, prednisone and blatant disbelief > in my pain and agony. > Sorry. I didn't mean to ramble but it's such a relief to find all of you. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 10, 1999 --- LymeDizzez@... wrote: > From: LymeDizzez@... > > In a message dated 6/10/99 12:44:32 AM Eastern > Daylight Time, > byrd@... writes: > > << You do not have ticks inside your body you have > small bacteria lurking > around in there. >> > > Whew! This is all so nerve wracking enough, LOL. I > have found a doctor who is > more knowleageale (I am told) regarding Lyme Disease > than any other physician > in Mass. I found a Lyme Support group in Fall River > and that's where I got > the name from. He's on the Cape which is only an > hour from me. I've already > called my regular doc and made him schedule me an > appointment. I am learning > everyday that I am NOT the only one in my area. It > seems it is simply not > discussed because there are no definitive answers. > I'll be honest, I'd heard > of Lyme Disease, but I had no idea of the damage it > caused nor the pain and > suffering it brings. I am guilty of not being aware > until it's too late. > > , New Bedford, MA. > <A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme > Disease and Me</A> > ICQ # 26791014 > > - Glad you found a good LLD to see. Like you I knew a little about Lyme but had noo idea the severity of it or that it is as widespread as it is. Part of this is because unlike AIDS and other nasty diseases you very rarley hear it being talked about on the news or in the paper. And if you do it is called an easily curable problem and made to sound like there is no threat whatso ever to anyone. Also the docs downplay it so much because they dont want to admit its so common or just dont know themselves. Up until I found this wonderful list and started to do alot of reseach myself I believed what I was told by all of these docs. Now I have learned a valuable lesson and no longer just take what the doc says as gospel. Since I used to work with docs I knew about the ego thing but never dreamed that there were docs out there that just refused to believe something or turned away from it because of the Ins fallout. Like you I learned all of this too late. L ------------------------------------------------------------------------ > What do lizards and rock music have in common? > > They both have communities at ONElist. Find yours > today! > ------------------------------------------------------------------------ > 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 " ) > _________________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 12, 1999 Welcomeback Amy Sounds like you have had quite a time. Hope all goes well from here. Hugs, Connie, MI Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 14, 1999 --- Milsun@... wrote: > From: Milsun@... > > Hi everyone! > I'm new to the group even though > i've had lyme for over 5 > years...Misdiagnosed by a number of Doctors!!I've > had many ups and downs..if > anyone wants to chat please Email me at > Milsun@...!Talk to you later! > > Welcome to the group. I hope you will continue to post and share your valuable experiences. We are a great group and always welcome new ideas and its a great place if you just need to vent. L ------------------------------------------------------------------------ > Have you entered ONElist's " Grow to Give " program? > > Deadline is June 19. Join now to win $5000 for your > charity of choice. > ------------------------------------------------------------------------ > 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 " ) > _________________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 14, 1999 Welcome to the Group.....I too have had Lyme misdx for a few years. It will be four years at the end of the summer..........Its hard to believe I've lost that much time of my life...... ......But I am a survivor and stay an active participant in my health care and up to date as much as possible on current info out there. I just don't throw myself into the hands of the Drs.....especially not with this disease.........There is a lot to learn here......glad you have joined us......Connie in NWNJ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 16, 1999 Thanks Connie its good to be back, Hope all is well with you Hugs Amy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 16, 1999 Hi Again Amy, This is the best place to be, is with people who understand out position and mess we are in. Hugs to you, Connie, MI Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 26, 1999 Hi ! Welcome! Mogdrmom Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 27, 1999 Dear , I will pray for you and yours. Why did your Doctor switch you from something that was helping you. I don't understand. You'd think that if they yeast was being taken care of and then you stoped what was helping you would get it back worse. Prayers for peace in your life, that your children get better and you find something to correct the mold and musty basement. They do have things that you can put into paint that are not expensive. I would ask if there was a spray or something to correct that problem or I would check my liabrary. Cheerfully Myra Hello Hi Everyone, My name is , and I was diagnosed with Candida in May, (finally). The doctor put me on Nizoral, and I did really well on it. After 2 weeks, he switched me to Nystatin, and I had a lot of problems with it and had to quit taking it. Now I am struggling to overcome my symptoms again. My main symptoms were the sugar craving and extreme fatigue. I am a single mom with 4 kids at home. One of them is handicapped. Life is a little hectic right now. I just moved to a house with a dusty, moldy basement, so that's not going to help my health any. I'll keep this short for now. I'm looking forward to meeting all of you. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 6, 1999 Hi, Glad to hear that brooke was able to start decreasing her prednisone. I hope it works well and doesn't cause any flare up for her. My son got the go-ahead on Thursday and has been reduced by 5mgs, down to 25mgs a day, starting this past Friday. We'll probably stay at this dose for at least a month before trying to go down again. It's always been a difficult process for us and if all goes well, I'd really like for this to be successful this time around. I don't want to get too overly optimistic but I am always hopeful. It doesn't start getting to hard till we get down around 15mgs, anyway. So, we've still got some leeway. He was starting to get really Cushingoid. Still is. Weighs 65 pounds and is still 3 feet 11 inches. For the past 3 years!!!! Has been eating like crazy! Has very round 'moon face' and a little pot belly, extra body and some facial hair. Having some difficulty fitting into his favorite shorts. Is very particular about the newest styles and fashions and hasn't like a few of the newer shorts I've bought :-( He definitely needs to be with me these days, if we're purchasing clothing. He sorts of looks like a cuddly little Teddy Bear. He can't wait to slim down a bit again. I love him either way but i know it's affecting his self image a bit because people do comment sometimes. And they just love to pinch his cheeks. He's managing, though. And still feeling pretty good. , if you give us an update on how manages with each successive drop in the prednisone, I'll do the same for Josh. Maybe one of these days they'll be joining the company of the kids represented on the list who no longer need to take prednisone!!!! Who is currently on that list, by the way? Which kids here don't take prednisone? Hey, maybe that's a good question to ask through the new onelist service? Maybe I'll give it a try. Well, anyway, hope you guys are well :-) Take Care, Georgina shancna@... wrote: > Hello my daughter went to Boston today ,and they agreed to start to decrees her pediepred 1mgevery two weeks I hope this works out for her . I hope every one is doing well thank you and Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 8, 1999 Holly is not on pred at the moment, but i am not gonna say that too loudly Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 8, 1999 that is good . How old is Holly? and how is she doing? >From: Ajaomom@... >Reply- onelist > onelist >Subject: Re: [ ] hello >Date: Thu, 8 Jul 1999 00:44:59 EDT >MIME-Version: 1.0 >From errors-80038-775-shancna=hotmail.comonelist Wed Jul 7 21:46:17 >1999 >Received: (qmail 7006 invoked by alias); 8 Jul 1999 04:46:12 -0000 >Received: (qmail 6996 invoked from network); 8 Jul 1999 04:46:12 -0000 >Received: from unknown (HELO imo27.mx.aol.com) (198.81.17.71) by >pop.onelist.com with SMTP; 8 Jul 1999 04:46:12 -0000 >Received: from Ajaomom@... by imo27.mx.aol.com (IMOv20.21) id >hASa019491 (4197) for < onelist>; Thu, 8 Jul 1999 00:45:00 >-0400 (EDT) >Message-ID: <2266f4f6.24b586cb@...> >X-Mailer: AOL 4.0 for Windows 95 sub 13 >Mailing-List: list onelist; contact -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: Ajaomom@... > >Holly is not on pred at the moment, but i am not gonna say that too loudly > >--------------------------- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 8, 1999 Georgina if my daughter is not handling the decrease of the pedie pred thius time she will be coming of th metho and start on enbrle I am leary only because if she gets any thing we wii have to stope until she is better ,and it costs about 1,ooo a month and my insurance does not cover it all is now down to 9 mg but she is starting to have some brake threw pain so we have started the Motrin again ,so I hope to cotinue I hope that you have better luck with your son!!! this time this is only our thierd try to get here down you have had more tries then that by the sounds of it I am very concerned about 's long term effects of pediepred I want her off a.s.a.p!! well good luck & >From: Georgina <gmckin@...> >Reply- onelist > onelist >Subject: Re: [ ] hello >Date: Thu, 08 Jul 1999 12:38:58 -1000 >MIME-Version: 1.0 >From errors-80038-783-shancna Thu Jul 08 15:38:58 1999 >Received: from [209.207.164.227] by hotmail.com (1.5) with SMTP id >MHotMailB94E7382012FD82197D8D1CFA4E33E800; Thu Jul 08 15:38:58 1999 >Received: (qmail 12309 invoked by alias); 8 Jul 1999 22:39:35 -0000 >Received: (qmail 12270 invoked from network); 8 Jul 1999 22:39:34 -0000 >Received: from unknown (HELO smtp2.gte.net) (207.115.153.31) by >pop.onelist.com with SMTP; 8 Jul 1999 22:39:34 -0000 >Received: from gte.net (1Cust12.tnt1.wailuka.hi.da.uu.net [153.35.75.12]) >by smtp2.gte.net with ESMTP for < onelist>; id RAA18944 Thu, 8 >Jul 1999 17:38:50 -0500 (CDT) >Message-ID: <37852882.A7DB3F49@...> >X-Mailer: Mozilla 4.61 [en] (Win95; I) >X-Accept-Language: en >References: <2266f4f6.24b586cb@...> >Mailing-List: list onelist; contact -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > ><< text1.html >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 8, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi n, <p>Yup. I sort of know what you mean :-) & nbsp; I hope Holly continues doing well without it. I often wonder what made Josh's case so much different from others. He has never, ever been able to get off the prednisone, since the very beginning of this illness. Not even for a temporary respite! It's been over 4 years now. All we've ever done is raise and lower the dose, according to the symptoms. Never getting lower than 9mgs. And it didn't last very long at 9mgs either. It caused a major flare and he had to go right back up to 30 within a week! Well, this time around, like all the other times, I figure we've had more experience with it and maybe if we go nice and slow, we'll have better luck (results). I sure hope so. It just scares me a little to think that the longer he stays on it, the more likely that he'll be dependent on it and the harder it will be to ever get off it. And we all know about the side effects of long term use. <p>A lot of people have told me that if he tries Enbrel it will probably make it easier to lower. But our doctors are still cautious about trying it, especially since the symptoms are usually controlled okay with the current meds. Well, I guess only time will tell. Maybe one of these days. He's down to 25 mgs a day right now. We'll have to celebrate if he gets back down to 10mgs. I'll keep you guys posted! <p>Take care, <br>Georgina <p>Ajaomom@... wrote: <blockquote TYPE=CITE>From: Ajaomom@... <p>Holly is not on pred at the moment, but i am not gonna say that too loudly</blockquote> </html> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 9, 1999 Holly is 5 diagnosed with systemic jra at 9 months old. Presently she is doing fairly well, some joint pain, alot of rash, no real fevers though. We are crossing our fingers and toes, that it will stay this way or better for a while, but the more rational side of me says, i can see the freight train a comin. She is taking just mtx right now, motrin as needed. Talk with you soon, n Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 9, 1999 How old is Holly now? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 9, 1999 holly is 5, she will be 6 in December Quote Share this post Link to post Share on other sites
