Guest guest Posted October 13, 1998 Report Share Posted October 13, 1998 Hello, all: I am also new to this list and am in awe of the response it has received. It is wonderful. I have just realized something and wonder if anyone else has had a similar thing happen to them. I have had Lyme disease for over 6 years and do fine on antiobiotics and then seem to relapse after about a year of being symptomless. My last regime of antiobiotics involved Biaxin and Plaquenil....the plaquenil was new for me. I took that combo for 6 months. I have now been TOTALLY symptomless for 5 months.....I usually have " little " things returning within that time. It just dawned on me recently that I now only started on the Biaxin/Plauenil combo but also one month prior to that went on hormone replacement therapy. I am wondering if some of my symptoms were actually attributed to menopause or could hormone replacement actually enhance the affectivness of the antiobiotics? Just a thought.....any ideas? Thank you, Mona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1998 Report Share Posted October 13, 1998 Hello, I would like to introduce myself to the list, but I am new at this and would appreciate some help. Thank you, Sonya > [lyme-aid] Welcome to lyme-aidonelist > > Hello, > > Welcome to the list. Please take a moment to review this message. > You > may want to save this email so you can refer back to it at a later time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1998 Report Share Posted October 13, 1998 Hi Mona, my name is Amy and I am still in the trying to a dx stage. I never have seen anyone touch upon the aspects of what how their symptoms changed in the beginning. I have been suffering from what I believe is lyme disease since last Feb, in which I started with a horrific headache, since then I have had a numb face, numbness and tingling throughout my whole body, ( different areas at different times) major memory loss, muscle spasms, muscle fatigue, emotional distress, ect...the list goes on and on. I have had so many different symptoms that I can't even begin to write them all down because I'd need at least 24hrs straight for typing lol. I am curious to see how normal it is with lymes disease to have symptoms come and go so often, heck every once in a while I actually have a pretty good day, or what seems to feel like one because the symptoms are not as bad as they may have been yesterday. I am now experiencing major stiffness and joint pain, which has only started the last month. Can you shed some light on this issue for me?? Thanks Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1998 Report Share Posted October 17, 1998 Hi Marta my name is Vaerie. I recently joined this list and noticed all of your messages and replys to people. I wanted to thank you for being so active and commend you on all of the info you are sending people. this list is great.It is so nice to know we are not alone in fighting this disease. You seem very knowledgeable and I wanted to ask you this question. Do you know anything about hyberbaric oxygen and if any chambers exist in New York or Long Island? I recently visited one in Ft. Lauderdale Florida and was considering trying it (especially if one is closer) Please write me back if you get a chance. I know you are very busy with all these e-mails Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1998 Report Share Posted October 17, 1998 hi My name is I too have had Lyme for over 5 years and have the exact same sequences of relapses as you I have been better for periods of up to a year and a half only to relapse again. I might start on biaxin and plaquinel soon and was wondering if you could tell me what hormone replacement therapy is and if you found out any additional information on it and it possibly affecting antibiotics. I pray that you remain symptomless forever!!!! People have been cured!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1998 Report Share Posted October 18, 1998 <<they handed out a list of possible symptoms relating to menopause and I was amazed as how many of them are also on the Lyme disease list. There seemed to be a correlation in my case. I was very surprised to find things like chest pain, shortness of breath, muscle aches on the menopause list....I have had them all along with others.>> This is why I was so long in going to the Dr. with my symptoms, I thought it was just the discomfort to be written off to menopause. It wasn't until I go stuck in the middle of the stairs and couldn't go up or down the steps that I thought I better go see what the heck was going on. By then I had almost completely forgotten the bites. (How self protecting are these spyro-gyros.) <<I had gone away for a 5 days and didn't deep up with my regime.....so I suffered two days after I got home for being absentminded.>> For this reason alone, one should never underestimate the value of a bottle brush and keep it close at hand! UGH! Who said that? Oh, well... D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1998 Report Share Posted October 18, 1998 Hi, Vallerie: I was taking estrogen continuously and then I would take progesterone on the first through the tenth day of each month. Within a couple of days I would get my period ( albeit much lighter than normal). I had also gone to a seminar regarding menopause in which they handed out a list of possible symptoms relating to menopause and I was amazed as how many of them are also on the Lyme disease list. There seemed to be a correlation in my case. I was very surprised to find things like chest pain, shortness of breath, muscle aches on the menopause list....I have had them all along with others. I was taking 500 mg. of Biaxin twice a day and the plaquenil twice a day. I never had any adverse reactions to either. I have taken the Biaxin many times before......I live on acidopholous (sp) when I even " Look " at a bottle of antiobiotics LOL. In the 6 years, I only had one yeast infection and that was definitely my fault. I had gone away for a 5 days and didn't deep up with my regime.....so I suffered two days after I got home for be adsentminded. I hope the biaxin/plaquenil works for you. Keep in touch, Mona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 1998 Report Share Posted October 20, 1998 Hi Val, Welcome to the list, I am sorry for the delay in responding, but you have Lyme disease, so I guess no explanation is necessary, other than good days, bad days. As for HBOT studies, Bernsten has a web page devoted to this treatment that has some good information, patient accounts of how it worked for them, and some links to other websites. Here is the url: http://www.connix.com/~berntsen/hbot.htm. My friend and local support group leader, Jane Chapman tried HBOT, she told me yesterday that she would be willing to take telephone calls from anyone interested in her story. Her telephone number, here in NJ is: 609-629-2446. I believe you can find where the HBOT treatment centers are either through Jane or 's webpage. As for my knowledge of Lyme disease, honestly, all I know about it, you could put on the head of a pin, this list was created to share information, encouragement and support. Many on this list are much more knowledgeable and I am so grateful for them. Marta > Do you know >anything about hyberbaric oxygen and if any chambers exist in New York or Long >Island? I recently visited one in Ft. Lauderdale Florida and was considering >trying it (especially if one is closer) Please write me back if you get a >chance. I know you are very busy with all these e-mails Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 1998 Report Share Posted October 21, 1998 Thanks for the info! This list is really great Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1998 Report Share Posted October 29, 1998 Hello my name is Sandy and I live in Plano Texas. I am new to Lyme. At least that is what my internist thinks I have but he won't treat it since the titer he took was negative and he said he is not familiar enough to make a clinical diagnosis. He would like me to see an infectious disease specialist, who I can not even get into to see for 3 weeks. This is not the best area to be dealing with Lyme since it is relatively unknown here. The doctor believes I contracted Lyme in Massachusetts/Maine/New Hampshire all three places are endemnic and I was walking through the woods, fields and at the beach in early August. A couple weeks following that I started having severe pressure, numbness and tingling in my head. They did all sorts of MRI's and other tests and could not come up with a cause. Eventually that got a little better and life went on. Then a couple of weeks later I started to have severe chest pressure that would not go away. Again, they did some tests but no answers. The only thing it showed is that my CPK levels were through the roof. I then started getting various aches and pains in my neck, back and arms. The chest pain is still severe and is aggravated by any exertion including exercise. Therefore my life is sort of on hold until I can get treated for something. This has been very frustrating since I went from being a very active/healthy 37 year old with 5 children who have very active lives. I think the hardest thing has been the lack of care and concern from the medical community. But, from everything I have read that is not a unique experience. I am currently trying to track down a doctor in the Massachusetts area and I am thinking of flying up there to try and get someone that is familiar with Lyme to work with me. Thanks for inviting me to join your list. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1998 Report Share Posted October 29, 1998 Dear Sandy: Welcome to the list. Where in New Hampshire were you? I got my lyme in New London in August. Lovette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 1998 Report Share Posted October 29, 1998 Sandy, I would love to keep in contact, I live in Maine, and want the docs to know that lyme is in our area, keep me informed. Thanks Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 1998 Report Share Posted November 4, 1998 In a message dated 10/29/98 8:38:34 AM CST, SkiMeSto@... writes: << Hello my name is Sandy and I live in Plano Texas. I am new to Lyme. At least that is what my internist thinks I have but he won't treat it since the titer he took was negative and he said he is not familiar enough to make a clinical diagnosis. He would like me to see an infectious disease specialist, who I can not even get into to see for 3 weeks. This is not the best area to be dealing with Lyme since it is relatively unknown here. >> You're right, not much experience here in Texas. I'm in Houston. Seems like I have read that there are a few LLMD in the DFW area. I also believe there is a support group there. Can't guide you any further than that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1998 Report Share Posted November 14, 1998 Hi Marta and Harry, Thank you for the wonderful welcome. I turned on my compter and there were 15 E-mails. How cool, from Lyme patients just like me. I already send a note before I even read your nice welcome. Hope it was OK. As time goes on I will tell everyone my story. I have had Lyme for 5 years and hope I can help others get through some of the very tough days that still keep popping up. Anyway, Thanks so much. I am glad I joined. Connie Cslyme@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1998 Report Share Posted December 1, 1998 Hi. I'm back after an absence of several weeks...and I really missed keeping up with the posts. You probably won't remember me, but I am the gal from Mississippi who had been diagnosed with MS but felt her symptoms were more in line with Lyme. members were very supportive and provided a lot of sources of information. I followed up, getting an address of a lyme specialist in Mobile, Ala from the Lyme Disease Foundation. He was a really great guy, and proceeded immediately with the case history and the blood tests. My test came back with a lot of suspicious activity on the IGG bands although no antibodies were found. This didn't surprise the doctor since my tick bites were over 20 years ago and he felt that it would be improbable to have a positive antibody reaction on the blood exam at this point. He examined every aspect of my case and felt it was very unlikely that I had MS (!!!) and was pretty convinced that lyme was the cause of my problems. I can't tell you how elated I was to finally have my suspicions confirmed and the ill fitting MS label removed!! I am now taking my first course of oral antiobiotics, Bioxin, to see how I do and if we're on the right track. A herx reaction would be more physical proof. The doctor feels that if all goes as he expects that I might be a good candidate for hyperbaric treatments, possibly as early as six months (??), and he anticipates that I will feel a lot better soon. At any rate, I feel much, much better after less than a week of antibiotics. I don't know if this is just euphoria after years of searching for answers (and never really following the expected MS diagnosis/scenario, and having my regular doctor complain that I just " read too much " ...needless to say, he is no longer my doctor), or whether the antibiotics are really helping. Regardless, I wanted to sincerely thank all of you for your encouragement and your help. If it hadn't been for the support and information you all offered (thank goodness for the internet!!), I probably would have labored under the MS burden and eventually been talked into expensive MS treatments that would have done no good, and possibly a lot of harm. My very sincere thanks. Raine Strom (desraine). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 1998 Report Share Posted December 1, 1998 Good for you, finally on the right track after all this time. It's amazing what a good doc can do for you. I have been through the route of MS and am still not a complete confirmed lymie, but tested positive for babesia, and had started on lyme meds a week before having to go off them to treat the babesia. Believe I was herxing after about only 36 hours of meds in me. Well keep us posted. Hugs Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1998 Report Share Posted December 2, 1998 Dear Lorraine, Your story sounds just like mine. I too was glad to hear that I had Lyme Disease after being diagnosed with MS. Luckly I was treated for the Lyme and have been doing okay since, not wonderful but okay. My daughter on the other hand has had Lyme for 11 years, been treated and treated, and just seems to get sicker and sicker. Is now almost unable to walk and is in uncontrolable pain. We are putting her in the Hyperbaric Chamber starting on Jan. 25, 1999. We don't know what else to try. I would love to hear any one else's experiences with the chamber. What is the treatment plan for you Lorraine? Thanks Meg >------------------------------------------------------------------------ >Help support ONElist, while generating interest in your product or >service. ONElist has a variety of advertising packages. Visit >/advert.html for more information. >------------------------------------------------------------------------ >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 Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 1999 Report Share Posted March 13, 1999 Hi just wanted to let all of u know i had unsubcribed from the list about a week ago due to probems with my server i had to change servers so now i resubcribed with my new address. it gizmo@... glad to be back sue lyme-aid-owneronelist wrote: > Hello, > > Welcome to the list. Please take a moment to review this message. You > may want to save this email so you can refer back to it at a later time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 --- lyme-aid-owneronelist wrote: > Hello, > > Welcome to the list. Please take a moment > to review this message. You > may want to save this email so you can refer back to > it at a later time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 rebecca.....glad u took my advice welcome to our little piece of mind.......we support all who enter........... Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 i have LD via a western blot positive. i have felt like a 100 year old woman for one year now (arthritic lyme). my current problem is that i have an appointment w/2 drs., both 4 - 6 hours away from my house. can any one give me a thumbs up or down on either a dr. swartz at john hopkins or a dr. george leon in waldorf, md. i need aggressive LONG TERM antibiotic treatment, not a quickie dose of doxyc. thanks for any input. 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 13, 1999 Report Share Posted May 13, 1999 Hi, Marta I am compiling a list of Southern LLMd's, so if anyone knows any, please e-mail me directly with any information! I've heard good things about Dr. Gill in Bethesda, MD, his phone # is 301-215-7200. He's associated with the NIH that treats chronic LD patients, and is supposedly the best LLMd you can get in this area. In a message dated 5/13/99 6:12:46 AM Eastern Daylight Time, mlmccoy@... writes: > I do know that a Dr Berg in MD, is a terrific Lyme doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 Hi Mimianne, I have not heard of either of these doctors, but I do know that a Dr Berg in MD, is a terrific Lyme doctor, if you need more information about him, drop me an email. Welcome to the list, I am sure you will find lots of support and information here. Best to you, Marta >From: mimianne@... > >i have LD via a western blot positive. i have felt like a 100 year old >woman for one year now (arthritic lyme). my current problem is that i have >an appointment w/2 drs., both 4 - 6 hours away from my house. can any one >give me a thumbs up or down on either a dr. swartz at john hopkins or a dr. >george leon in waldorf, md. i need aggressive LONG TERM antibiotic >treatment, not a quickie dose of doxyc. thanks for any input. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 Hi , I know my friend Patty sees a Dr Berg in MD, I will write her and ask for his phone number and address. Hugs, Marta - >From: FIG4159@... > >Hi, Marta >I am compiling a list of Southern LLMd's, so if anyone knows any, please >e-mail me directly with any information! I've heard good things about Dr. >Gill in Bethesda, MD, his phone # is 301-215-7200. He's associated with the >NIH that treats chronic LD patients, and is supposedly the best LLMd you can >get in this area. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 1999 Report Share Posted May 13, 1999 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). From: FIG4159@... > >Hi, Marta >I am compiling a list of Southern LLMd's, so if anyone knows any, please >e-mail me directly with any information! I've heard good things about Dr. >Gill in Bethesda, MD, his phone # is 301-215-7200. He's associated with the >NIH that treats chronic LD patients, and is supposedly the best LLMd you can >get in this area. > > > >In a message dated 5/13/99 6:12:46 AM Eastern Daylight Time, >mlmccoy@... writes: >> I do know that a Dr Berg in MD, is a terrific Lyme doctor. > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? > >Come join one of the 145,000 email communities at ONElist! >------------------------------------------------------------------------ >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...
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