Guest guest Posted May 1, 2001 Report Share Posted May 1, 2001 In a message dated 5/1/2001 2:52:07 PM Eastern Daylight Time, popwoman@... writes: > But all these popular AND scientific press > keep leaning so heavily on " joint pain. " My joints > never hurt. My knees and elbows are working fine. > My BONES are on fire Hi , Just know that you are not alone. My joints are affected only minimally. It is my bones, muscles, nerves, and skin that ache & burn & throb. And, for additional clarification, not everywhere, and not all at once. The sites keep changing. Also, my bladder, eyes, brain, & ears are affected. Sometimes my arms hurt so much that (don't laugh now... ) it feels as though I can barely walk. I never heard of anyone with this symptom, but doubt if I'm the only one. Good luck with your treatment. Hugs, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 When I read this article I was furious...This Dr Rosenfeld ( whoever he is) is just continuing to spread myths about lyme disease which hurts everyone. I especially liked his statement " Be assured that if the disease is successfully treated early enough you'll be cured " Well Doctor, how early is early enough? I started antibiotic's within 6-8 weeks of being bitten and exactly one year later I'm still sick ( and I've been on abx the whole time). How do these doctors get away with telling everyone lyme is " easily cured " / From what I now know it's obvious that ther is no cure....all we can do is try to push it into remission. We really should give Parade an earful about publishing such rubbish...If they really want to print helpful information they should write about all the controversy surrrounding this disease. Doreen in SE PA On Tue, 01 May 2001 14:10:42 -0000 popwoman@... writes: > My apologies to everyone, as I can't keep up > well with all the messages. > > This might have already been discussed, but there > was a major article in that Sunday paper glossy > magazine, Parade. This gets such wide distribution, > so millions of people will read it. > > As I mentioned before, one of my major frustrations > with the disease information is the misleading > descriptions of symptoms. As we all know, the list > of possible symptoms and complications goes on for > pages. But all these popular AND scientific press > keep leaning so heavily on " joint pain. " My joints > never hurt. My knees and elbows are working fine. > My BONES are on fire. At the worst of it, I could > have drawn a detailed sketch of my own skeletan, > even if I'd never seen one before. I know just this > led to my first doctor's confusion and misdiagnoses. > > I really want to focus on this, and perhaps do a > massive letter-writing campaign to all the organizations > to change their literature. Anyone with ideas > could write me off-list if you like. I hope that all > literature could be changed to a more inclusive statement, > such as " symptoms may include, but are not limited to " , > and please refer to these websites for lists of the > many possible symptoms. Something like that. > > I wrote to one and they were dismissive with a > " our press releases are checked by doctors. " > Doctors who have never felt these bizarre > pains could not possibly begin to describe them! > > The article also suggests waiting for a rash to appear > before starting antibiotics, which goes against > all my personal experience. > > Thanks for reading, > > > > > 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 May 2, 2001 Report Share Posted May 2, 2001 This article didn't help in dealing with my In-Laws, who barely believe their precious Son could possibly have LD, HME and HGE at all. In their minds, okay, he might have it and should get treatment. However, to them, there's no possible way that Myself, Son and Husband could all have it. There must have been some mistake. See another Dr. Have tests done again, etc. No matter that I tell them we all had our tests done through different Labs. Nor that it doesn't mean we all got infected at the same time or location. Arrrrggghhh....this article didn't help one bit! Sally > My apologies to everyone, as I can't keep up > well with all the messages. > > This might have already been discussed, but there > was a major article in that Sunday paper glossy > magazine, Parade. This gets such wide distribution, > so millions of people will read it. > <snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2001 Report Share Posted May 2, 2001 I read that article too and was furious. Although I am just furious period. A couple of years ago, my legs were hurting really bad and my ankles would swell. So the doctor took a blood test and it showed positive for Lyme, so they put me on like 6-8 weeks of Doxy. Then they took a blood test again and they said it was negative now. One band was still showing positive though. By this time I was feeling ok now. Time went by with symptoms like stiff neck, being tired, change in memory (forgetting things a little), and just not feeling well. I was sent to an Infectious Disease doctor who saw my blood tests, looked over me in 5 minutes and then said, I don't think you have Lyme, and didn't further explain anything. My legs still hurt of course and its always so hard to explain how they feel besides that they ache and sometimes feel like I won't be able to get out of bed or off the couch or chair. I don't know what else to do. I am just so fed up and discouraged, I stopped talking to them about it. I work in an area where there are lots of deer, so its not like it wouldn't be likely for me to be infected again. I never did find a tick nor did I have a bullseye rash, so how am I to know how long ago I was infected? Discouraged and Depressed, Anne in MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 , I am in the same situation. I have no joint pain. Most of mine is headpressure, heavy fatigue, depression, memory & cognitive skills are never the same and it also depends on the cycle of the herx's that I experience over these past 4 years. On good days I do lyme education talks and also stay involved in the equine industry as that is my first love. Oh yes, my horse was bit the same time I received my " second " bite. He is doing better then I am thanks to networking with people on the east coast. I was in contact with our Equine Specialist who is with the US Dept of Ag and was a practicing vet prior to this. He among others that I networked with helped me through the treatment. I had to educate the Michigan State Veternarian on the lyme situation and the lack of reporting that they do and as a result, the state and the practicing vets including the MSU Vet School are not getting the proper information. Thankfully, Dr. C. knew me before lyme disease hit and also knew me when I had cancer & chemo. He is now working to pursue better reporting in the animal industry. I figure, if the animals were recognized as lyme victims, we humans would be helped the most!! I have used my personal experience to say: " I'D RATHER GO BACK TO CANCER AND CHEMOTHERAPY DAYS then live a life as a chronic lyme patient. I say this without any hesitation at all. Some days that are really bad I have not wanted to live any longer but with support & medication I survive and hope to warn others that they can prevent it unlike cancer that you can't at this point. Need I say more. Hang in there. There are days when I would love to write a book on a daily diary that might discribe the roller coaster we all live on. Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2001 Report Share Posted May 3, 2001 Simply amazing! When I say cancer and chemo was a breeze compared to Lyme, people look at me like I'm totally nuts. It was much easier than chronic lyme. Joyce -- Original Message -- >, > >I am in the same situation. I have no joint pain. Most of mine is >headpressure, heavy fatigue, depression, memory & cognitive skills are never > >the same and it also depends on the cycle of the herx's that I experience > >over these past 4 years. On good days I do lyme education talks and also > >stay involved in the equine industry as that is my first love. > >Oh yes, my horse was bit the same time I received my " second " bite. He >is >doing better then I am thanks to networking with people on the east coast. > I >was in contact with our Equine Specialist who is with the US Dept of Ag >and >was a practicing vet prior to this. He among others that I networked with > >helped me through the treatment. I had to educate the Michigan State >Veternarian on the lyme situation and the lack of reporting that they do >and >as a result, the state and the practicing vets including the MSU Vet School > >are not getting the proper information. Thankfully, Dr. C. knew me before > >lyme disease hit and also knew me when I had cancer & chemo. He is now > >working to pursue better reporting in the animal industry. I figure, if >the >animals were recognized as lyme victims, we humans would be helped the most!! > >I have used my personal experience to say: " I'D RATHER GO BACK TO CANCER >AND >CHEMOTHERAPY DAYS then live a life as a chronic lyme patient. I say this > >without any hesitation at all. Some days that are really bad I have not > >wanted to live any longer but with support & medication I survive and hope >to >warn others that they can prevent it unlike cancer that you can't at this > >point. Need I say more. > >Hang in there. There are days when I would love to write a book on a daily > >diary that might discribe the roller coaster we all live on. > >Bev > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2001 Report Share Posted May 4, 2001 I do have the joint pain (arthritis) from Lyme Disease, along with all of the horrible Neurological symptoms. I wonder if it is because different strains cause different symptoms? Is there any info out there about different strains of Lyme cause different symptoms? I often wonder because, when I was treated with IV antibiotics, A few symptoms went away. Such as the over whelming tired feeling that I would get in my legs, aching feet, headaches were under control. The others still remained & I have never been in remission yet. Does this mean that I have different strains & that is why a combination of antibiotics usually is what works? I know that my LLMD is going to try a combination, but we are still waiting for a positive PCR before I can start treatment. Thanks, Kim S. GOODGIRL95@... wrote: In a message dated 5/1/2001 2:52:07 PM Eastern Daylight Time, popwoman@... writes: > But all these popular AND scientific press > keep leaning so heavily on " joint pain. " My joints > never hurt. My knees and elbows are working fine. > My BONES are on fire Hi , Just know that you are not alone. My joints are affected only minimally. It is my bones, muscles, nerves, and skin that ache & burn & throb. And, for additional clarification, not everywhere, and not all at once. The sites keep changing. Also, my bladder, eyes, brain, & ears are affected. Sometimes my arms hurt so much that (don't laugh now... ) it feels as though I can barely walk. I never heard of anyone with this symptom, but doubt if I'm the only one. Good luck with your treatment. Hugs, a --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2001 Report Share Posted May 5, 2001 Anne- Don't be discouraged and depressed. TAKE CHARGE, THIS IS YOUR HEALTH!!!!!! I will write you privately with some people that can help, I don't like to post it 'publicly'. sue in nj sue massie Quote Link to comment Share on other sites More sharing options...
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