Guest guest Posted September 12, 1998 Report Share Posted September 12, 1998 Dear Esther: Hi my name is and I too have a goiter on my right lobe. I am in the process of surgical removal of the right lobe only and the isthmus. The goiter is constricting structures within in my neck including blood flow. I had/have periods of increased heart rate, sweats, nausea and purple feet when crossing my legs and standing first thing in the morning. My TSH was 3.3 and now it runs between 1.1-1.6 and considered normal. When I went into a severe attack, I was in the hospital and had my TSH run during an episode. It was .99. Any thoughts about this and your ideas? My e-mail address is lisawick@... Would like to hear from you. ______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 1999 Report Share Posted January 20, 1999 Dear Anne: Blessings to you! What wonderful news!! When you ask if the lyme is still there, does it really make a difference? If you feel well and are functional, look at it as a gift - don't look back [or forward] and dwell on the negatives of " what if " . You have been given a gift that many of us hope for. Use it well, use it wisely, but use it! And give thanks to God for your healing! Lovette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 1999 Report Share Posted January 21, 1999 anne, its not what the blood tests say it is how u feel that matters.......in my opinion lyme blood test are a waste of blood and money.....even the best labs are not accurate......most drs i know put more credence in how the pt. feels rather thatn the blood work.......it basically is a clinical dx.......based on symptoms.......i hope that you are in remission and stay there.......i hate to ever use that word " cured " from what i have read we are never " cured " .........maybe someday.....god bless Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 1999 Report Share Posted January 21, 1999 Reid and all, I know that the Lyme diagnosis has to be made on a clinical basis, but where I get confused is how they can differentiate CFS/FM symptoms from Lyme disease. It has gotten so that I know which doctors will diagnose the same symptoms as Lymeand which will call it CFS/FM. Does anybody know ;how these illnesses are differentiated from each other clinically? Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 1999 Report Share Posted January 21, 1999 At 08:33 PM 1/21/99 -0500, you wrote: >From: ellenlu@... (Ellen Lubarsky) > >Reid and all, >I know that the Lyme diagnosis has to be made on a clinical basis, but >where I get confused is how they can differentiate CFS/FM symptoms from >Lyme disease. It has gotten so that I know which doctors will diagnose >the same symptoms as Lymeand which will call it CFS/FM. Does anybody >know ;how these illnesses are differentiated from each other clinically? >Ellen > It will take time for the Steere group to be unmasked, but EVENTUALLY, the medical profession will recognize that the most likely cause of CFS/FM is Lyme disease. One of today's tragedies is that the majority of physicians have listened to the Steere line, and glibly diagnose CFS/FM amd refuse to consider Chronic, long-term Lyme, or even admit it exists. A great many CFS/FM victims, when Lyme antibiotic treatment is suggested to them, are afraid to consider abx treatment, because, at some time in the past, they have had what they believe to have been an allergic reaction to abx. In reality, while allergic reactions to abx do occur, they are rare, and, in most cases, what the patient believes was allergic reaction was in reality a Herxheimer reaction, which those knowledgeable about Lyme know is an indication that the spirochete is present and being killed. Some day, all this will pass Colby Van Atta >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 1999 Report Share Posted January 21, 1999 Ellen, You bring up a very valid question when you ask how the doctors are supposed to tell the difference between FMS/CFS and Lyme. The fact that too many doctors are all to " quick " to diagnose FMS/CFS or some of the other syndromes and or diseases that can be diagnosed instead of the true illness, Lyme, is something my own Lyme doctor has commented upon to me. I know that I spent 20 years seeking a cause of the all over joint pain that started in my late 20's, and the all over muscle skeletal pain that became chronic going on 9 years ago, too many years of pain until I was finally diagnosed " after " the neurological symptoms escalated and drove me to new doctors. It is possible to have FMS/CFS and Lyme at the same time, the FMS/CFS " can " be caused by the underlying undiagnosed and untreated Lyme disease. The question of which disease and or syndrome to treat a patient for is the dilemma. In my opinion, this is the reason we must find Lyme literate physician's to treat us instead of doctor's who are willing to treat on the basis of what information we give them on Lyme and do it trial and error. Don't misunderstand me, that's better than nothing but do we honestly want to take mega doses of antibiotics if we're not sure we have Lyme? I don't think I am the best one to judge if I have Lyme or not, but then I was lucky (or unlucky since it took 20 years to diagnose) in that the pain doctor I self referred myself to asked me to be tested for Lyme to " rule it out " and then sent me to a Lyme literate physician. Problem is that too many of the people out there, myself included, do not or did not have a clue that Lyme was a possible diagnosis instead of or in addition to the myofascial pain and fibromyalgia pain syndromes. So, the key has to be finding a Lyme literate physician to treat you plus helping to inform and educate others about the possibility of Lyme being the causative factor of illness and debility. It's a nightmare to be so sick for so long and even begin to doubt yourself and your sanity because no one believes you can hurt like you do and feel the way you feel for so long and not find help. The difficulty in diagnosing and treating Lyme is in itself reason enough to seek out the Lyme literate physicians. Yes, labs can make mistakes or the Bb can collapse the cell around itself and hide from your immune system and you will not test positive, but the Lyme literate physician will know this and will use the other tools at hand to rule out other possible illness too. It's not a magic pill kind of deal and it's not a quick cure, and to be certain, it's not a piece of cake to diagnose. I KNOW that the Lyme diagnosis is RIGHT because finally after years and years of so many unexplained symptoms that made me seem to be a hypochondriac, some of these symptoms are finally getting better on the antibiotic treatment. At this point, I have been put in the position of having to " defend " my Lyme treatment to the insurance companies and to other physician's who don't believe in Lyme or believe all Lyme can be cured in 14 days. Sorry, it doesn't work that way for everyone and that's certainly true for people like me who have probably had it half their lives, undiagnosed and untreated. So, as long as I know, and I do know in my gut, that this is finally the right treatment and there have been some improvements, I will continue the treatments. I don't see that I have any choice if I ever hope to get well enough to be able to return to work. I feel confident that the new testing, by culturing the blood for the Bb recently published will be duplicated by others and we will finally have a test that can prove the Lyme is present even after aggressive treatment. So, the next step will be once the presence of Lyme can be proven, then I am hoping that other researchers will finally begin looking for cures for Lyme. Until then, I read everything I can get my hands on and learen all that I can about this illness and the effects it can have our us plus the treatments and even though I have a Lyme literate physician and have every confidence in my physician, I am still going to be as informed a consumer patient as I can be so I can make " informed " decisions regarding any medical treatment I am offered or receive. Wishing us all health and freedom from pain, both physical and emotional - Ellen Lubarsky wrote: > From: ellenlu@... (Ellen Lubarsky) > > Reid and all, > I know that the Lyme diagnosis has to be made on a clinical basis, but > where I get confused is how they can differentiate CFS/FM symptoms from > Lyme disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 1999 Report Share Posted January 21, 1999 Colby, EXCELLENT! You are exactly right about the reactions to the antibiotics. Another that is similar is the business about the other physician's who do not understand or believe that Lyme can do all that it does and or be such a problem for so long is the question of taking the antibiotics in larger doses for longer periods of time. Having seen what Lyme can do to some people, seeing others patients in my doctor's office, my husband and I are 150% sure that the risk of taking the antibiotics is minimal compared to not taking the antibiotics! Also, as has been written, the long term treatment of acne has caused people to be on antibiotics for long periods of time without harm, so for myself, the antibiotics are what I can do until someone gets serious and finds a cure! Wishing us all health and freedom from pain, both physical and emotional - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 Ellen, As far as I know, CFS/FM do not get rashes, or Herxheimer reactions when treated with abx. There are more differences, but can't think clearly, just woke up...Yawn..... Marta From: ellenlu@... (Ellen Lubarsky) Reid and all, I know that the Lyme diagnosis has to be made on a clinical basis, but where I get confused is how they can differentiate CFS/FM symptoms from Lyme disease. It has gotten so that I know which doctors will diagnose the same symptoms as Lymeand which will call it CFS/FM. Does anybody know ;how these illnesses are differentiated from each other clinically? Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 Marta, I have had a positive elisa and a western blot that was positive enough for my LLMD, but not for the CDC. I did not, however, have a herxheimer when treated and never noticed a rash , so I am still confused about the clincical differences between Lyme and CFS/FM. . I appreciated your response to my last post, and I know you just woke up. But if you later have any more thoughts about the clinical differences between CFS/FM and Lyme, I would begrateful for further information. I'm not trying to be difficult here. I really do have a lot of trouble with with the concept of Lyme being a clinical diagnosis. At this point. after long term abx, I suspect that I have chronic Lyme,but have some hesitation about being treated again unless I am more certain of the diagnosis. This is because the systemic yeast from the abx has itself been disabling. I have seen two doctors and gotten two different opinons, and I know at this point that I can predict the diagnosis I get by knowing which side of the controversy the MD is on. The post-infectious side says my cognitive problems are not suggestive of Lyme,and,, indeed, the cognitive problems ain't nothing compared to the fatigue. Although I have plenty of cognitive problems , my short term memory is not real bad.. Is there any basis to using only specific cognitive problems in diagnosing Lyme vs. CFS/FM.? Sorry this is so long. I would really like to know more about the differential diagnoss, not only for myself but for others I know who are being diagnosed with CFS/FM. Friends are beginning to see me as the Lyme hysteric who thinks every sick person has Lyme. (and I pretty much do).. For myself, I am currently waiting for the results of my babesia and ehrlichia tests from my LLMD before restarting Lyme tx. In the meantime, I'm turnng up other problems with my non_LLMD, like neurally mediated hypotension, low thyroid and hypoglycemia, all of which may or may not be signs of persistent infection. So, if there is any more information about clinically differentiating these illnesses., I would really appreciate it.. Thanks, Ellen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 Ellen Lubarsky wrote: > From: ellenlu@... (Ellen Lubarsky) > > Friends are beginning to see me as the > Lyme hysteric who thinks every sick person has Lyme. (and I pretty much > do).. Glad I'm not alone here!! I think I have found Lyme in 3 of my friends, since I've been ill. One of them is in her 40s, and had a preliminary diagnosis of ALS. She thought her life was over. I persuaded her to go for testing and find an LLMD -- she went yesterday. But she had every single symptom that I've had, and even got sick at the same time and on the same timetable. The doctor told her that the joint pains, shooting pains, plantar fascitis, etc that she was having were unrelated to the fatigue, twitching and weakness. Oh, okay. And he never did a Lyme test. I've got another friend whose 20-year-old daughter returned from a year working with Americorps building low-income housing in rural areas. She's had joint pain in both hands, both arms, sore knees, stiff neck, excruciating back pain, sleep disturbances, weight gain, depression and confusion. The doctor told her she had tendonitis, and put her on ibuprofen. I said, " Tendonitis ALL OVER HER BODY?? " I am hoping I can persuade them to get another test done. Just in my circle of acquaintances, I have met over 2 dozen people who had been diagnosed and treated for Lyme in the past few years. Few of them had spoken out about their experiences, and although many of them are friends with each other, they didn't know the other had been ill. I have tried to encourage them to speak out more and educate people about what's going on here -- this is exploding into such a huge epidemic in NJ, and there are still so few people who know what's going on! Jean > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 I had the same aches and pains as the 20 year old daughter including pains so bad in my legs, I wasn't sure if I was going to be able to walk or not. I was diagnosed with Lyme. My Western Blot came up positive and then they took another titre test and it came up negative, only one band, I think it was 39 was positive. So they say that the lyme is gone, but I'm not letting my guard down. My doctor said if I get any of those symptoms back again, we will run another blood test. But I know exactly what you are saying....I think the same way sometimes about my husband. Anne from land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 1999 Report Share Posted January 22, 1999 Ellen, I hope you will get the answers to what you are looking for. I know what you are saying about conflicting opinions. I started with neurologists.....ended up with 3 diff docs 3 different opinions. It wasn't until I saw real life on MTV that I even contemplated lyme disease. I really believe that you should study any health problem that you can find related to your symptoms and then go with your gut instinct. I met a woman recently who was an MD and has had to give up her practice due to lyme, she stated to me that its ironic that most lymies have to dx themselves and then find a doc to confirm their suspicions. Go with your gut instinct and you will probably be right. Take care, and make sure you are going to a LLDoc who is highly recommended. I am a little scared of the money game that goes with lyme disease for I have found that most of the good docs don't take insurance. All I can suggest is that you search and ask people about the DR you are seeing. We all know that bad news travels fast, so if others are feeling that he or she is miss dxing people you will find out easily. Take Care and let me know what you find out. Hugs Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 1999 Report Share Posted January 23, 1999 cfs and fm are by products of lyme....i have been dx with both......however there are many more symptoms....i was origanally dx with ms.....what my llmd was do test to elimanate all other possible diseases Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 1999 Report Share Posted May 6, 1999 Madonna, When sharing good news like that you shouldn't have to worry about making it short. I am so glad everything checked out okay. Now just to get the rest of it taken care of. Hang in there----I'm sure your hubby will be fine in no time. Joan in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 , That is so great to hear, I am so glad things are looking good for grace!!! n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 Fantastic news about Grace. Tell me which exact meds is she on again at the moment and what are her symptoms if any? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 N. Read you news about Grace. Glad to see SED rate was down. I have to say I understand about the relatives, just take it in stride. Enjoy Grace's time being well, we as parent's are always sitting on the edge, but you know what it never gets any easier, each time they flare we feel that we should have known that it was going to happen, but guess what after 10 years it still isn't any different. I take it a day at a time and take the good with the bad. I really want to say that I'm really glad that she is doing well now. Lots of Love, Laughter, and Prayers. -Coady and Leigh-Ann ---------- > From: Jakuch@... > onelist > Subject: [ ] Good News > Date: Sunday, July 11, 1999 1:27 PM > > From: Jakuch@... > > Dear All, > We had some good news about Grace this week. After a harrowing fight with our > HMO about which doctors we could see we finally got some blood tests done. I > almost started crying when the doc said Grace's SED rate was 3. Also her > platelets were 410, the lowest they've been since this whole thing started. > Compared with a SED rate of 86 and platelets in the 750 range last fall, this > is good news. For the time being she'll be kept on all her meds. We > cautiously shared the info with our relatives ... they so much want to > believe that this disease is still like the flu and that she's over it now. > I, on the other hand, am taking the long-range view -- enjoy like heck the > time when she's well, don't worry about her getting sick again, BUT, be > prepared. Anyway, it's going to be sunny and 80 here today and after I finish > painting the bathroom, we're outside. > N. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi , <p>I think you've said that before, that it never gets easier, and that is so true. Sometimes after everythyng's going well for a while, we sort of do start taking it for granted that everything's fine. Then suddenly, and a lot of times without any warning, it all starts over again. And the flares are often just as bad as the original episode. Scary. Just when you think you've got everything under control. Oh well. I guess that's just the way it is. We really do need to appreciate the good times, however simple, to the max. <p> Coady wrote: <blockquote TYPE=CITE>From: " Coady " & lt;kacoady@...> <p> N. <p>Read you news about Grace. & nbsp; Glad to see SED rate was down. & nbsp; I have to say I <br>understand about the relatives, just take it in stride. & nbsp; Enjoy Grace's time <br>being well, we as parent's are always sitting on the edge, but you know <br>what it never gets any easier, each time they flare we feel that we should <br>have known that it was going to happen, but guess what after 10 years it <br>still isn't any different. & nbsp; I take it a day at a time and take the good <br>with the bad. & nbsp; I really want to say that I'm really glad that she is doing <br>well now. & nbsp; Lots of Love, Laughter, and Prayers. <p> -Coady and Leigh-Ann</blockquote> </html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 <!doctype html public " -//w3c//dtd html 4.0 transitional//en " > <html> Hi , <p>Your news is so terrific!! I'm happy that Grace is doing so well :-) & nbsp; I hope it lasts like this & nbsp; ... indefinitely! Geez, the lowest SED rate Josh has ever had was 28! So, you know I can appreciate your daughter's results. It's probably a good idea to keep all the meds the same. Looks like they've finally found the right combination to control all her symptoms! That's great. <p>I know how it is for your relatives. A lot of people just don't understand. They want to believe it's a one time thing and once the child has recovered from the flare, that all is well. This is definitely not like the flu. It's a chronic, long-term, and potentially disabling disease for which there is no known cure. If your daughter is able to be symptom free, that's probably the best we can hope for. Her treatment plan is working :-) & nbsp; If and when there is another flare sometime in the future, and maybe there won't be, hopefully you'll be able to get it under control quickly and restore the equilibrium again. <p>Thanks for sharing your good news! And I'll bet the bathroom looks gorgeous, now! What color did you paint it? <br>~Georgina <p>Jakuch@... wrote: <blockquote TYPE=CITE>From: Jakuch@... <p>Dear All, <br>We had some good news about Grace this week. After a harrowing fight with our <br>HMO about which doctors we could see we finally got some blood tests done. I <br>almost started crying when the doc said Grace's SED rate was 3. Also her <br>platelets were 410, the lowest they've been since this whole thing started. <br>Compared with a SED rate of 86 and platelets in the 750 range last fall, this <br>is good news. For the time being she'll be kept on all her meds. We <br>cautiously shared the info with our relatives ... they so much want to <br>believe that this disease is still like the flu and that she's over it now. <br>I, on the other hand, am taking the long-range view -- enjoy like heck the <br>time when she's well, don't worry about her getting sick again, BUT, be <br>prepared. Anyway, it's going to be sunny and 80 here today and after I finish <br>painting the bathroom, we're outside. <br> N.</blockquote> </html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Leona, You're right, we started about the same time. I started going down on the prednisone in February, after I started azathioprine the prior November. I went off completely the first of June. I have not been to a Mayo clinic. I see the director of Hepatology at St. Louis U. This department was rated as one of the top hospital departments in the country by US News and World Report. Dr. Bacon is " the man " and he is an absolutely wonderful partner. My secret? I wish I had a recipe for success in this, but I don't. However, I can tell you that I do believe that there are some significant factors that have made a difference for me (they won't necessarily make a difference for others). The care I have received from this top notch doc has been very important, I have changed my diet and eat very healthful, I take milk thistle three times a day (who knows if this does anything but eat up my funds), I drink a lot of water with lemon, I gave up alcohol except for special occasions and what I believe to be the most significant factor in my recovery is reducing my stress. I have cut the stress in my life significantly by quitting my job, saying no to some of my usual activities, meditating, doing yoga and other relaxing forms of physical exercise and keeping the pace of my life generally manageable. As I said, these things I truly believe have made a difference, but I do believe that none of them are as powerful as the azathioprine and I am very grateful for the meds and them saving my life. The above activities have helped me cope with the side effects of the meds as well as get me off of them. I hope you can get weaned off one or more soon. Warmly, Roxanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Roxanne, Congratulations!!!!! Eileen AIH, UK [ ] good news > From: CREE8V1@... > > I just got back from my liver doc and my enzymes are still normal. I have > now been off the prednisone for three months and am only on 50mgs of > azathioprine. For the first time in years, I actually feel " normal " . I > still need my daily nap but otherwise I feel good. My doctor and I hugged > each other and we both feel really optimistic about my prognosis. > > Also, I wanted to share with you all that my husband, who is a video and film > producer, is volunteering to produce a documentary for the Midwest Organ > Donation Organization. He shot the first segment on Saturday interviewing > four soft tissue organ recipients. I am very proud of his efforts. > > Thank you to all of you who have helped me through this tough couple of years > to help me reach this point. The information and emotional outreach on this > list has really been my therapy for coping. > > Love, Roxanne > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Roxanne, I'm envious. I believe we started reducing prednisone about the same time did'nt we? I started in March but 3 wks after my last pill May 5th I started not feeling well. Dr did another biopsy Jul 30th after increased lft's of lab results so now he has me back on 10mg with intentions of reducing to 5 & there I will be forever. He increased the azathioprine from 50 to 100 when I started decreasing prednisone & I am still on 100. I hope that will be decreased eventually but he said we will see. Someone in this group has been to Mayo sdale & I was thinking it might be you. If so who was your Dr? Mine is Dr on. I am happy for you & hope you continue well. Whats your secret?:-) Leona M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Hi all, welcome Nina! And congratulations Roxanne!!!!! That is wonderful news... Thank your hubby for us all, we need to have someone big on our side! I am not on treatment yet, but I hope ? to be soon. I will see my new GI on Thursday. I really need to do something about this fatigue and terrible muscle/joint pain! I haven't shared much cause I'm still just learning, but I read ya'lls notes every day. Thank you for the education, and especially for the comfort of knowing that I am not alone... (AIH) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Congratulations Roxanne!! I am so happy for your remission...and also very happy that you have such a great relationship with your doctor (by the sounds of it)! Stay well, and I hope it's forever! >From: CREE8V1@... >Reply- onelist > onelist >Subject: [ ] good news >Date: Mon, 30 Aug 1999 12:20:34 EDT > >From: CREE8V1@... > >I just got back from my liver doc and my enzymes are still normal. I have >now been off the prednisone for three months and am only on 50mgs of >azathioprine. For the first time in years, I actually feel " normal " . I >still need my daily nap but otherwise I feel good. My doctor and I hugged >each other and we both feel really optimistic about my prognosis. > >Also, I wanted to share with you all that my husband, who is a video and >film >producer, is volunteering to produce a documentary for the Midwest Organ >Donation Organization. He shot the first segment on Saturday interviewing >four soft tissue organ recipients. I am very proud of his efforts. > >Thank you to all of you who have helped me through this tough couple of >years >to help me reach this point. The information and emotional outreach on >this >list has really been my therapy for coping. > >Love, Roxanne > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Great news, Roxanne! I'm so happy for you! Kathy (AIH) Seattle area Quote Link to comment Share on other sites More sharing options...
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