rach66
09-16-2002, 02:13 AM
I was just diagnosed this past Fri. after being ill with what they said was CFS and fibro since I was 17. I'm 36 now. I've done research and feel very discouraged. I'm wondering if anyone out there has had a recovery after being ill for as long as I have. In the last year, I developed panic attacks, and facial tremors -- I'm certain there's nerve damage. I'm hoping for a miracle that this will be reversed. Any positive stories? Treatment for chronic Lyme in those who've been sick as long as me?
Sponsor
jane7178
09-20-2002, 10:21 AM
Congratulations on finally getting the proper diagnosis! I have had Lyme for almost eleven years. I would think that you could get much better with the proper treatment, which is simply long term antibiotic therapy usually. After all, this is an infection, and that is what works on it. I seldom read the research, it just scares you to death. I live with it, so I just know from my own experience. This is something that can definitely be treated though, not just some vague diagnosis that does not have a specific treatment. So, be glad about that. Do you have a good doctor who is a Lyme specialist? That is essential to your recovery. I wish you the best.
rach66
09-20-2002, 12:51 PM
Hi, thanks for your message. Are you symptom-free-- if so, when did the symptoms abate? Also, wondering how long you've been on antibiotics and whether you've tried Plaquinil, too. Thanks again. Any bit of positive helps.
rach66
09-20-2002, 12:52 PM
Hi, thanks for your message. Are you symptom-free-- if so, when did the symptoms abate? Also, wondering how long you've been on antibiotics and whether you've tried Plaquinil, too. Thanks again. Any bit of positive helps.
jane7178
09-20-2002, 11:24 PM
I had Lyme disease for 27 months before it was diagnosed and I began treatment. The Doxy did not affect it, so I was treated with oral amoxicillin in a high dosage for several months. When the symptoms completely disappeared, I stopped treatment (the doctor did.) Then, of course, the symptoms recurred, and that time the oral medication did not work, so I was put on bi-cillin injections. That did the job, and I was on them regularly for five years. I have been in total remission for three and a half years, but I have been having some of the symptoms recur over the last several weeks. Usually, two Z-packs taken five days apart, will put me back in remission. That did not do it this time, so it may be necessary for me to start back on antibiotic therapy soon. It took a while initially, but I did start having some good days, then more good days then bad, and then finally all good days. It was remarkable. I just stayed on the treatment, did not stop even when I felt better. This is an infection, and long term antibiotic therapy is essential. Don't be discouraged. You can fight this and you can win.
rach66
09-21-2002, 12:13 AM
You have no idea how good it is to hear your words! Thank you. I think you are the only person in the country who is doing well. The literature is just so unbelievably depressing, and of course, since I've been sick for so long, doubly so, but I'm trying like crazy to stay positive. Thanks again.
jane7178
09-21-2002, 12:44 AM
I have a suggestion. Don't read the literature. You don't need to do that, you live with this disease. You could write the literature!! I live with it, I read very little about it. I have a wonderful doctor, who is an expert on Lyme disease. She knows how to treat it, has a straight-forward manner concerning it, and just takes care of it. I have done exactly as she has told me to do, and I have done very well. I never thought I would get my life back, but I have, and I am thrilled every moment. I was extremely ill before finding her. Since I became her patient, I have no more concerns about this disease, she takes care of that. I do hope you have a good doctor who knows how to handle this disease, that will make all the difference. Don't give up, just having a diagnosis puts you on the road to recovery!!
rach66
09-21-2002, 11:50 AM
I think you may be right! A friend has been telling me the exact same thing--don't read the literature. I have my first appt. with Dr. Sam Donta this Wednesday. He is the expert around these parts so I'm hopeful. If there's anything else you've taken (supplements, althernative therapy) please let me know.
Thank you again for your positive outlook. I'm signing up!
Thank you again for your positive outlook. I'm signing up!
jane7178
09-21-2002, 12:14 PM
Good, see you are doing better already!! I do take super lysine and regular lysine when I have a flare-up. I have tried this enough to know that without a doubt, it works for me. I start the super lysine right away for several days and supplement that with the regular lysine. The super lysine has other herbs in it that all work together to strengthen your immune system and to help with your energy levels. It makes an amazing difference with me. I am glad you will be going to a specialist this week. Please relax this weekend, and just know that you are on your way to getting better.
ticker
09-21-2002, 09:55 PM
Rach33, many people have had Lyme for a long time before getting diagnosed. Yes, you can get better! Make sure you are tested for the co-infections that ticks carry--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella. Many people who have Lyme are co-infected. It is my understanding that Babesiosis is fairly prevalent in MA. The treatment for the co-infections differs from the treatment for Lyme.