Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 I don't know if you're taking Neoral, but one of its side effects are swollen gums. Sara in LA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 In a message dated 17/04/01 18:30:28 GMT Daylight Time, zmann721@... writes: hello to all, hope we are all doing well. this is my first post, so i'll get to the point. i was first diagnosed with pa in early of 91 when i was 22. have had symptoms since i was 18. Hi, You didn't say your name, but welcome anyway. Mike (from the UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2001 Report Share Posted April 20, 2001 In a message dated 21/04/01 04:51:30 GMT Daylight Time, dgross@... writes: The Rheumotologist I'm seeing has put me on 200 mg of Voltaren per day and 1500 mg of Salazopyrin per day moving to 2,000 mg after three weeks. Again after reading the many letters from the group I'm confused as to what I should be taking as many of you seem to be expert on what to take. Hi , and Welcome. Please do not be confused by your readings here ! You can only go by your Doctors/Specialist advise. We, as individuals, have found, over time, some sort of 'remedy' that works for US! that does not mean it will work for someone else. The postings here, are a guideance for people, if they wish, to try. They, like me, may not have heard of half of these remedies !! So they are 'thrown' on here in case we want to give them a try. No one will say to you that this is a 'dream' cure! because, as we know, there is no cure, only, for some of us, relief !! I said a while back, that I used MTX and Cyclosporin A - these nearly passed me on to the 'other' side ! :-) BUT, I would not dream to say to the group, 'hey! don't use this stuff, it will kill you!!'....because I know, that for some, it works, or at least helps. Keep with us, we may not be able to find a cure, but hopefully we can have a 'laugh' or two along the way!! and keep our spirits up (or in some of our cases, DOWN!!), (depending on what you drink !!) :-) Right now, I wish I was in the UAE, soaking up that SUN!! make a change from the cold, damp weather we are experiencing here!! ROLL on Summer !! Mike (from the UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2001 Report Share Posted April 22, 2001 In a message dated 4/20/01 10:52:11 PM US Eastern Standard Time, dgross@... writes: << I am newly separated and maybe the PA is my punishment for leaving 28 years of marriage >> - I hope that was meant as a joke. I'm sorry your marriage didn't work out, but no one deserves PA. And no one deserves punishment for a failed marriage either - it always takes two to fail in that subject. Welcome to the group, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 <<Can I whine a little - my partner of 8 years just left me; I'm just hoping that the stress doesn't get the better of my joints>> I'd say that's worth a whine. Try to reduce your stress however you can (exercise, meditation, a good cry/whine with a good friend) - we all know that's one of the worst things to set off a flare. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 In a message dated 05/29/2001 12:27:42 PM Eastern Daylight Time, thomason@... writes: << but my job requires that I am up at 3am and work part-time. Any suggestions? My husband has been very understanding but I am frustrated with my fatigue and inability to do the simplest task.I force myself to do it regardless of how I feel and I know this is not taking care of myself but I have 3 kids and homeschool them too. >> WOW!!! No wonder you are having flares. It sounds like you are trying to do it all! For me, stress is the worst thing to bring on pain and although you don't say it, it seems with all of your responsibilities that you must be having stress. I know how difficult it is to change something in your life, but is it possible for you to quit the part-time job? Or maybe have your kids go to regular school? I don't know how you handle so much, and I'm just guessing, but I know if I were in your shoes I would feel overwhelmed. In my opinion, lightening up some of your responsibilities might make you feel better physically. I know sometimes that isn't possible, but maybe there is some way to either cut down or get extra help. I wish you well. Just reading what you do in a day has exhausted me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 Welcome ! THis group is great, we write everyone in power trying to get our cause some help. And everyone is always here for much needed moral support. Glad you found us! Pepi-TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 , Welcome! I am the list " owner " , but I try very hard to make this list belong to everyone. If you need specific help with , the webpage, or anything like that, let me know and I'll see what I can do to help. If you have questions about Lyme, send them to the group so that everyone can help. As for a position and agenda for this group, it would simply be to provide support for Lyme disease victims by Lyme disease victims. We try very hard to keep a positive attitude on this list and offer all kinds of support for everyone. I hope this works out for you! Sincerely, Robynn -Owner [ ] New to group > Sorry I messed up. I am just learning. I am new to this list and > the computer but someone is trying to help me. Thank GOD!!! My > friend did a search for me for Lyme and found this group. I am not > stupid I just cannot work this stupid machine! Old dog and new > tricks. > > A little about me. My name is . I was diagnosed with Lyme > about 12 years ago/ I unfortumately know it well. I still have > positive PCR after many years. > > What is the official position of this group? Is there an agenda? Is > a coordinator? > > I am trying to read old messages to learn. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 Hi , My name is Sheryl and I from Tennessee. None of us are stupid, but boy do we have days that we think we are. I hope you find what you are loking for here. Sheryl [ ] New to group > Sorry I messed up. I am just learning. I am new to this list and > the computer but someone is trying to help me. Thank GOD!!! My > friend did a search for me for Lyme and found this group. I am not > stupid I just cannot work this stupid machine! Old dog and new > tricks. > > A little about me. My name is . I was diagnosed with Lyme > about 12 years ago/ I unfortumately know it well. I still have > positive PCR after many years. > > What is the official position of this group? Is there an agenda? Is > a coordinator? > > I am trying to read old messages to learn. > > > Welcome to > > Easy Reference: > Send a blank email message to: > > -Unsubscribe - Unsubscribe from the list > -Digest - Switch your subscription to a digest format > -Normal - Switch your subscription to normal > > Please send messages not related to Lyme disease (this includes humor and information about other diseases) to -Offtopic > > The archives can be accessed at > > The chat room is always open! > /chat > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Hi : I am Glen from beautiful New Jersey. Welcome to the group and I am glad you found us. I have found this group very supportive and helpful for all of us individually and the cause of Lyme-awareness in general. We learn from each other and help each other and are advised about issues that of crucial to patients regarding all the politics of lyme medication and the work any of us can do to help treatment modalities become available for all who need them and in the most effective way. It is amazing how everyone here pulls together around the cause and the positive attitudes that flow from the list. I know even thought I don't write as often as I should that the group has been such a help to me. I hope you enjoy the group as much as I do. Regards and Peace to you: -Glen from NJ On Mon, 25 Jun 2001 angelataber@... wrote: > Sorry I messed up. I am just learning. I am new to this list and > the computer but someone is trying to help me. Thank GOD!!! My > friend did a search for me for Lyme and found this group. I am not > stupid I just cannot work this stupid machine! Old dog and new > tricks. > > A little about me. My name is . I was diagnosed with Lyme > about 12 years ago/ I unfortumately know it well. I still have > positive PCR after many years. > > What is the official position of this group? Is there an agenda? Is > a coordinator? > > I am trying to read old messages to learn. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Glen In NJ Know it well, it's where the Drs believe I was first infected with Lyme. I lived in Panther Valley in Warren County and spent all my free time in the Delaware Nat'l Rec Area. Jeannie in N.C. Re: [ ] New to group Hi : I am Glen from beautiful New Jersey. Welcome to the group and I am glad you found us. I have found this group very supportive and helpful for all of us individually and the cause of Lyme-awareness in general. We learn from each other and help each other and are advised about issues that of crucial to patients regarding all the politics of lyme medication and the work any of us can do to help treatment modalities become available for all who need them and in the most effective way. It is amazing how everyone here pulls together around the cause and the positive attitudes that flow from the list. I know even thought I don't write as often as I should that the group has been such a help to me. I hope you enjoy the group as much as I do. Regards and Peace to you: -Glen from NJ On Mon, 25 Jun 2001 angelataber@... wrote: > Sorry I messed up. I am just learning. I am new to this list and > the computer but someone is trying to help me. Thank GOD!!! My > friend did a search for me for Lyme and found this group. I am not > stupid I just cannot work this stupid machine! Old dog and new > tricks. > > A little about me. My name is . I was diagnosed with Lyme > about 12 years ago/ I unfortumately know it well. I still have > positive PCR after many years. > > What is the official position of this group? Is there an agenda? Is > a coordinator? > > I am trying to read old messages to learn. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 On Wed, 27 Jun 2001, G Kuntzelman wrote: > Glen In NJ > Know it well, it's where the Drs believe I was first infected with Lyme. I lived in Panther Valley in Warren County and spent all my free time in the Delaware Nat'l Rec Area. > Jeannie in N.C. HI again: I live in Hunterdon County which has rather high rate of LD in NJ and is up there nationally too. Our County Paper said just today that some officials are pushing for more awareness and funding for Lyme whereas we hear always only of West Nile Virus in the media. It seems likely that I got this in my own back yard during the summer of 1999. That's when symptoms began and being on abx from that time 'till now I am just beginning to note improvement. It is amazing how SLOWLY one gets ahead of this!!! My daughter (one of 2 living - I lost one to Kidney failure some years back) does so much hiking and taking her dog (Choc. Lab) swimming around here that she is afraid of getting it is not already having it. (One quick test by my LLMD suggests that she does). I can't get here to go for more tests yet as she has NO insurance !! Also : I walk a lot as my LLMD tells me to and I am AMAZED how many DEER are in peoples yards, in the church driveway - in the fields just looking at me - they don't even move any more!!! I see them both morning and night in my community. This has just happened as of this year!!! Thankx for writing and keep posting: We love to hear from you. Glen in Beautiful NJ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 Hi a, Wow, your story sounds scary...and all too familiar. Stick with Dr.B. and good luck on the IV. Oh yeah, the reason that doctors said that the spirochete DNA found in your bone marrow meant nothing is because they knew nothing about Bb. Hang in there, Joan LI NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 Hi a, welcome to the group. my story is so eerily similiar to yours. i feel your pain and frustration. good luck with the IV abx. keep us posted on how you are responding and stay here for support. i am also on eastern LI in nassau county. holler if you have any questions or need to talk, pj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 What is the protocol for the IV Therapy for Lyme disease? What does Dr. B do with Iv Therapy? I want to show my doctor and share with him any research or antedotal records on other doctors that have followed this procedure. I am in Chronic Lyme - Stage 3 with Fibromyalgia symptoms. I want to get well as soon as possible! This has been in my body for 28 years! Please will some MD or DO's that have used this procedure give me some guidance, especially a doctor in the DFW area that will be aggressive with this disease. Thanks, KC Re: [ ] New To Group > Hi a, > Wow, your story sounds scary...and all too familiar. Stick with Dr.B. > and good luck on the IV. Oh yeah, the reason that doctors said that the > spirochete DNA found in your bone marrow meant nothing is because they > knew nothing about Bb. > > Hang in there, > Joan LI NY > > > > > > Welcome to > > Easy Reference: > Send a blank email message to: > > -Unsubscribe - Unsubscribe from the list > -Digest - Switch your subscription to a digest format > -Normal - Switch your subscription to normal > > Please send messages not related to Lyme disease (this includes humor and information about other diseases) to -Offtopic > > The archives can be accessed at > > The chat room is always open! > /chat > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 I don't know if you are aware of this or not but the former Gov of NJ had Lyme. I think both she and her husband. She really pushed for studies on mosquitoes carrying the Lyme bacteria. I lived in Maine before moving here to N.C., they are trying to get the state to do research on the Black Flies up there. Jeannie in N.C. Re: [ ] New to group On Wed, 27 Jun 2001, G Kuntzelman wrote: > Glen In NJ > Know it well, it's where the Drs believe I was first infected with Lyme. I lived in Panther Valley in Warren County and spent all my free time in the Delaware Nat'l Rec Area. > Jeannie in N.C. HI again: I live in Hunterdon County which has rather high rate of LD in NJ and is up there nationally too. Our County Paper said just today that some officials are pushing for more awareness and funding for Lyme whereas we hear always only of West Nile Virus in the media. It seems likely that I got this in my own back yard during the summer of 1999. That's when symptoms began and being on abx from that time 'till now I am just beginning to note improvement. It is amazing how SLOWLY one gets ahead of this!!! My daughter (one of 2 living - I lost one to Kidney failure some years back) does so much hiking and taking her dog (Choc. Lab) swimming around here that she is afraid of getting it is not already having it. (One quick test by my LLMD suggests that she does). I can't get here to go for more tests yet as she has NO insurance !! Also : I walk a lot as my LLMD tells me to and I am AMAZED how many DEER are in peoples yards, in the church driveway - in the fields just looking at me - they don't even move any more!!! I see them both morning and night in my community. This has just happened as of this year!!! Thankx for writing and keep posting: We love to hear from you. Glen in Beautiful NJ. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2001 Report Share Posted June 30, 2001 Hello and welcome to the group. You didn't tell us your name. My name is Vicky and I have hep-c. Don't give up. Keep calling Doctor's till you find the right one. I can definately relate to your fear of this disease. I'll be praying for you ok. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2001 Report Share Posted June 30, 2001 Hi and welcome to the group: My name is Diane.. I have never in my life heard of such thing..We have members in the area where you live. I am sure someone will give you some sound advice..... Until then hang in there and don't give up.... You are in the right place...... Angel Hugs, Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2001 Report Share Posted July 1, 2001 Hi Let me welcome you to the group. you'll find many caring and loving people here. I'm also . I was also very heavy when I had my biopsy done. It did not cause me any real problems. The one thing on your side is HCV is usually a very slow progressing disease. I don't know of any Dr. in Michigan but I,m sure that if you search long enough you will find one. If you are a veteran you might try the VA. Check with your local and State health departments and see if there are any treatment programs available for people who can not afford the meds. I don't remember for sure but I believe that the meds cost about 1000- 1400 a month. [ ] new to group > Hello everyone, > I am new to the group. Thanks for letting me be a member. I was first > diagnosed with hep-C earlier this year and was sent to a specialist. > When I went to see the specialist he talked to me about hep-C and > told me about the treatments available. He told me I was too heavy > for a biopsy because the needle would not reach the needle, and he > said I was not a good candidate for the medicine because I was > already suffering from depression which the hep-C medicine causes > also. So the only thing he told me was to lose weight. I thought this > was kind of odd and I left there thinking...so what am I suppose to > do? just lay down and die with this? my pcp received the letter from > the specialist and he went over it with me. I could not believe what > this so called doctor was telling me. He said there is no cure and > the medicine they have out makes you more sick. I had enough by then > and asked him, " what do you expect me to do? " just die without > treatment? and all he could say was, " calm down, you have time " I > walked out shaking my head in disgust. Unfortunately, now I have no > insurance so I sit here with hep-C that is not being monitored or > treated. I am very worried right now because I donot know what my > liver is doing, or what state it is in. Is there anyone out there who > has any advice on what I can do? Does anyone know how much the > medicine costs? Does anyone know of a competant specialist in south > eastern michigan that maybe I can go see? I'm not sure what to do at > this point, all I know is that I'm very scared right now. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2001 Report Share Posted July 1, 2001 my name is Jan and I am in your situation with the insurance, There are free clinics you can go to as I am doing and there is a place in California called Commitment to Care that helps with your medicines. I am on the Rebetron/Intron combo and it is very hard on me but it doesn't affect everyone the same way. My advice is to get to a clinic (Charity Hospital) and contact the place in California. Once approved which doesn't take long they will ship the meds to you within a few days. I have been on meds off and on since April. I have problemsd with mine and don't know if I can take them much longer but there are many in here on tx that is handling it better than I am. There is also the Herbal way which is Hepatico. Lots of members in the group have gone that way and are very pleased with it. I am considering it if I can't take tx much longer. Just remember we are all here to fight the dreaded dragon. We are herew if you need us and WELCOME TO THE GROUP!!! PEACE & LOVE FOR ALL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2001 Report Share Posted July 1, 2001 Group here is a place to cal about help with free medical advice on Dr. for free and for meds. the # is 1-877-764-9024. The person with whom to speak is . The name of the place is Priority Health Care.... It does not matter where you live. She is there to help us. Anyone interested please give her a call. PEACE & LOVE FOR ALL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Hi . Sorry about your predicament. Yes, I know the medication is not recommended for people with a history of depression, they have linked many suicide attempts and a few completions to the tx. There are, however, other options. Number one, we DO have time on our side, HCV is slow acting. There are herbs that help control it. Milk thistle, burdock root, etc., there are others in the group more knowledgeable than me on herbal remedies. hang in there and keep us posted. -dz- --- <rvf263@...> wrote: > Hello everyone, > I am new to the group. Thanks for letting me be a > member. I was first > diagnosed with hep-C earlier this year and was sent > to a specialist. > When I went to see the specialist he talked to me > about hep-C and > told me about the treatments available. He told me I > was too heavy > for a biopsy because the needle would not reach the > needle, and he > said I was not a good candidate for the medicine > because I was > already suffering from depression which the hep-C > medicine causes > also. So the only thing he told me was to lose > weight. I thought this > was kind of odd and I left there thinking...so what > am I suppose to > do? just lay down and die with this? my pcp received > the letter from > the specialist and he went over it with me. I could > not believe what > this so called doctor was telling me. He said there > is no cure and > the medicine they have out makes you more sick. I > had enough by then > and asked him, " what do you expect me to do? " just > die without > treatment? and all he could say was, " calm down, you > have time " I > walked out shaking my head in disgust. > Unfortunately, now I have no > insurance so I sit here with hep-C that is not being > monitored or > treated. I am very worried right now because I donot > know what my > liver is doing, or what state it is in. Is there > anyone out there who > has any advice on what I can do? Does anyone know > how much the > medicine costs? Does anyone know of a competant > specialist in south > eastern michigan that maybe I can go see? I'm not > sure what to do at > this point, all I know is that I'm very scared right > now. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 Hi , My name is Sherry and I am also from Michigan. First of all, exactly where are you? I am Flint. I know that there are many specialists at the University of Michigan hospital. My friend and I went to a conference about 8 months ago there. It is in Ann Arbor--is that close to you? Write back and let me know and I will try and help in any way I can. I won't be able to check my messages until evening this week as I am working every day, but I will get back with you. I promise you that. Sherry [ ] new to group> Hello everyone,> I am new to the group. Thanks for letting me be a member. I was first> diagnosed with hep-C earlier this year and was sent to a specialist.> When I went to see the specialist he talked to me about hep-C and> told me about the treatments available. He told me I was too heavy> for a biopsy because the needle would not reach the needle, and he> said I was not a good candidate for the medicine because I was> already suffering from depression which the hep-C medicine causes> also. So the only thing he told me was to lose weight. I thought this> was kind of odd and I left there thinking...so what am I suppose to> do? just lay down and die with this? my pcp received the letter from> the specialist and he went over it with me. I could not believe what> this so called doctor was telling me. He said there is no cure and> the medicine they have out makes you more sick. I had enough by then> and asked him, "what do you expect me to do?" just die without> treatment? and all he could say was, "calm down, you have time" I> walked out shaking my head in disgust. Unfortunately, now I have no> insurance so I sit here with hep-C that is not being monitored or> treated. I am very worried right now because I donot know what my> liver is doing, or what state it is in. Is there anyone out there who> has any advice on what I can do? Does anyone know how much the> medicine costs? Does anyone know of a competant specialist in south> eastern michigan that maybe I can go see? I'm not sure what to do at> this point, all I know is that I'm very scared right now.>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 Hi , Welcome to the group. You'll find alot of caring individuals here who will understand what it is your going through. How long have you been ill? Looking forward to chatting with you .. Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 Hi ! So...where are you in Michigan? Myself, I live in Rose Township (Holly). Are you seeing a Lyme Literate MD (LLMD)? Email me any time you wish to speak with another Michigan person. Btw, Myself, Husband and Son all have Lyme and/or co-infections. Sally Avery (Galsal@...) > Hi > I am new to the group also. My name is > and I live in Michigan. I was recently diagnosed > with lyme and am currently on IV rocephen treatments. > I raise labs and golden retrievers and show them. I > recently was referred to this web site http://www.whole-dog- journal.com/ > this months magazine of The Whole Dog > Journal has some great articles on lyme. There is also a whole list of > herbal treatments for lyme with recommendations as to doses for humans and > how to order them. There are suggestions as how you might > use them for your dogs. This is the only place I have found information on > herbal treatment of lyme. The only drawback is you have to get a $24 > subscription to be > able to access the magazine on line. By the way I am not > associated with the magazine just happy to find a resource for the use of > herbs. > Lindow > Summrset@c... Quote Link to comment Share on other sites More sharing options...
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