Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hello, I was just dx with Lyme about 2 and a half weeks ago. It took me 12 years to dx. The Lyme caused neurological problems. I have over 20 spots on my brain due to white matter disruption..so they thought i had MS but the spinal tap didn't show MS. I was Dx with fibromyalgia in 95 and it wasn't till about 2 mo ago i went to a new doctor that she ran a series of tests on me. It showed I had Lyme. MY problem is everything I read sounds so depressing. I am oral antibiotics but will be seeing a specialist soon. I have been on them for just over 2 weeks. I notice a slight improvement with my headaches...but I am so tired and weak today. I didn't even get out of bed except to get food and drinks. Of course that is nothing new to me....I have been sick for a long time. I was just hoping for more improvement by now. I had a couple of good days and I guess i was hoping things were improving. I have heard so many terrible stories of people who were dx late like i was. Even stories of people commiting suicide. I was wondering if there is any good news out there? Have any of you had luck with treatment and are you doing well? What can I expect as far as going back to work and feeling better. I am also taking supplements that my doctor asked me to take as well as regular meds (zoloft, vasotec,ambien cr, lyrica, vicodin for pain) I am normally a very upbeat person. I was so happy to finally be dx'd after all of these years...it was so horrible not knowing what was wrong. I never seemed to fit into any of the categories. My neuro, rheumy, and gp were of great help..but living in CA never thought of testing me for Lyme Disease. They were always understanding but puzzled by my many symptoms. Please if any of you out there have anything positive to say...I could really use it!!! Sincerely, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Don't be discouraged. It takes time. I was also diagnosed with fibromyalgia for 4 years before a new doctor found lyme. It took 6 months of trying different antibiotics before I started getting better. It was the azithromycin that finally did it for me, but different people respond differently to various antibiotics. Good luck and God bless. You CAN beat this! Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 You can beat this thing hun... Go to the CALDA support group in CA. They can help you tremendously.. Different people have different antibiotics that work for them and you will get better... Kep focused on that... It will happen... slowly at first and you will even feel worse initially as Lyme bacteria are being kiled off.... then you will get better... My son was basically bed ridden and ready to kill himself... Treatment was very hard for him initally... now he is a machinist working 50 hours a week!!! Luv, LLRN On Mon, Feb 11, 2008 at 11:05 AM, skyniimynii <skyniimynii@...> wrote: > Deborah > I too am on Azithromycin 250 mg. How often and how long did you take > the antibiotic? What types of other supplements did you use if any? I > have been taking the antibiotic for only 2 weeks. I will be taking it > for 3 months to start. Thanks for your help. I hope you feel better > today. Sincerely, > > > > > > Don't be discouraged. It takes time. I was also diagnosed with > > fibromyalgia for 4 years before a new doctor found lyme. It took 6 > > months of trying different antibiotics before I started getting > better. > > It was the azithromycin that finally did it for me, but different > people > > respond differently to various antibiotics. Good luck and God > bless. You > > CAN beat this! > > > > Debbie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 dont ever give up !! there is always hope !! i too was sick for a long time before the diagnosis of lymes... well... except for all those " other " diagnosises they gave me .. like " its all in your head " . the longer youve had it, the longer it takes to get better. if youve only been on antibitics for 2-3 weeks you may not have started herxing yet(especially if ur a 12 year patient)so you'll need to be very patient especially when you think to your self " i thought the treatments were supposed to make me better not worse " . i wish i could tell you that youd be back to normal in a couple weeks, but if its been years youve been sick, it may take awhile. but eventually you will get there !! its been a long road so far for me... but i continue to see slow steady progress. hth take care cfsguy > > Hello, I was just dx with Lyme about 2 and a half weeks ago. It took > me 12 years to dx. The Lyme caused neurological problems. I have > over 20 spots on my brain due to white matter disruption..so they > thought i had MS but the spinal tap didn't show MS. I was Dx with > fibromyalgia in 95 and it wasn't till about 2 mo ago i went to a new > doctor that she ran a series of tests on me. It showed I had Lyme. > MY problem is everything I read sounds so depressing. I am oral > antibiotics but will be seeing a specialist soon. I have been on > them for just over 2 weeks. I notice a slight improvement with my > headaches...but I am so tired and weak today. I didn't even get out > of bed except to get food and drinks. Of course that is nothing new > to me....I have been sick for a long time. I was just hoping for > more improvement by now. I had a couple of good days and I guess i > was hoping things were improving. I have heard so many terrible > stories of people who were dx late like i was. Even stories of > people commiting suicide. I was wondering if there is any good news > out there? Have any of you had luck with treatment and are you doing > well? What can I expect as far as going back to work and feeling > better. I am also taking supplements that my doctor asked me to take > as well as regular meds (zoloft, vasotec,ambien cr, lyrica, vicodin > for pain) I am normally a very upbeat person. I was so happy to > finally be dx'd after all of these years...it was so horrible not > knowing what was wrong. I never seemed to fit into any of the > categories. My neuro, rheumy, and gp were of great help..but living > in CA never thought of testing me for Lyme Disease. They were always > understanding but puzzled by my many symptoms. Please if any of you > out there have anything positive to say...I could really use it!!! > > Sincerely, Kathleen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 On Tue, 26 Oct 2010 15:20:56 -0000, you wrote: >nto my third week of T3 only following nicks protocol and feeling quite crappy. >Have got up to 31mcg cynomel and altho I did feel initial improvement it seems to have waned. >As the T4s leaving my body my temps have dropped quite dramatically and I just feel so exhausted and depressed. Maybe time for an increase then >Adrenals doing ok on isocort and getting ferritin up with ferrous fumarate. >Should I still be hoping for improvement as time goes on, getting v down about the whole thing It takes 12 weeks to clear RT3, as the T4 leaves you need to track the decrease with increases in T3. It is possible to get " non-hypo " in this time with enough T3 but it's a juggling act. Keep it well spread out and keep an eye on temperatures, if they get unstable that's normally adrenal. Remember the RT3 clears quickly from the blood but it takes longer for receptor clearance. Nick Quote Link to comment Share on other sites More sharing options...
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