I just got test results back (after a year and a half searching)that are positive for lyme's disease. I have had several different diagnosises to no avail. Now that I know, I am getting so much mixed information. Can someone please tell me what to expect? I just started a 14 day prescription of antibiotics. What kind of prognosis can I expect? What other treatments am I in for? And I guess, most of all...should I expect worse aches and pains and continued degeneration of my body? Some of what I read makes me feel almost like this is a very grim diagnosis. Everyone seems relieved that I have a diagnosis, but inwardly, I am a little frightened.
Posted by lpkayak (Member # 5230) on :
welcome. its good you found us. you need to read on here-try not to freak out. many will be by to help.
its good you are getting some abx but 2 weeks is not enough
it will help if you tell us the nme of the abx and the dosage
if you have any problem when you take them come here and talk about it-there are ways to fix the problems and the abx are vry impt
i hope you can find an LLMD (a lyme literate medical doctor). a doc that gave you 2 weeks of abx will not be able to give you the help you need
i don't want to overwhelm you remember is is a good thing you tested positive and got some abx
it will probably be a long road but you have help here
one other thing-remember this is "info on the net"
we all mean well but very few of us are docs and most of us are sick or have residual problems from lyme. so info you get here from other lymies is not always correct. actually-the problem is more the disease is new and complicated and the docs and scientists don'tall agree so info can be contradictory
hang in. many will be here to help you out.
some really good links for newbies are listed at the top by Anna Lee
also a factual site is : ilads.org
Posted by philly78 (Member # 31069) on :
I know how you feel. I was only recently diagnosed and have been abx for 8 days. I was both relieved and scared after finding out as I really don't know what to expect. I think it is normal to feel frightened. This is a complex disease.
I can say that through the course of the last week, some of my symptoms have been worse, but not to the point that I cannot function. I have still been working, although I did leave 2 hours early yesterday due to some pain. I lucked out as we were overstaffed and if I had to stay...I could have done it.
Are you seeing a LLMD? One thing I do know is that 14 days of abx is not going to be enough, especially if you have been sick for over a year. But it is a start.
You can go over to the seeking a doctor section and ask for help in finding a LLMD in your state. That is how I found my doctor.
Lastly, this board is full of some very knowledgeable people who are willing to help. I have been asking lots of questions and getting some pretty good feedback. Heck...some of the posters seem to know more than the doctors! but having a good doctor who understands the disease is key.
I wish you luck in your journey.
Posted by Lymetoo (Member # 743) on :
Make sure you locate an LLMD right away. 14 days will not cure you. Go here for help in finding one.
You will feel worse before you feel better.. but you will WIN!
Posted by tinkhilton (Member # 31418) on :
Thanks everyone for answering so soon. The abx that they have me on is doxycycline 100mg 2x a day. The prescribing dr told me that they will refer me to a LLMD. Thank you also for reminding me that even on here some of the info can be a little subjective. I am finding though, that the most reliable info is coming from others who are in the same boat with me. I guess I will just prepare myself for the long haul and wait to talk to the LLMD before I try any home remedies...vitamins, etc that people are telling me. I am glad I found this site. It's good to know that I am not crazy, that these things I am experiencing are real.
Posted by Lymetoo (Member # 743) on :
You need 200mg of doxy twice a day.
Your PCP is sending you to an LLMD or AN INFECTIOUS DISEASE DOCTOR??
They are two VERY different things!!!
Posted by tinkhilton (Member # 31418) on :
He hasn't said yet. But someone sent me a private message about a dr in Tampa that is highly recommended, I am going to insist that my PCP give me a referral to that dr. So, I think I am finding out what y'all meant about it being worse before it gets better. I have only been taking the dooxy for 4 days and today I am in so much pain...I want to just quit and go back to not knowing.
Posted by payne (Member # 26248) on :
hi tinkhilton,
This site is awesome, i wish i could offer some answers... this site will.
know how to use the search 1st,
remember names of elders that are easy to follow.
Use the directory, I went back in time with some of the past info here and was overwhelmed with great info, there are 1,000's of post here that need to be highlighted... Use this sights backlogs - I am not computer smart enough yet, to tell you how to dig in but, its all here... its like the Bible of Lyme
Hint, i thought a spell checker would be grand, But, being a symptom of this disease is word processing ... so, you would want to show john Q public the reality of how we are truly effected,
if all or thoughts and words were perfect, no one see our struggles to comunicate.. Great sight and glad you are getting ready ti grab this monster by the tail... as we all are holding on for the ride of our lifes...
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by tinkhilton: I have only been taking the dooxy for 4 days and today I am in so much pain...I want to just quit and go back to not knowing.
- I hear you!! Day 4 is the usual first day of "real" herxing. Do what you can to detox. Lemon water is good. Do a search here on detoxing.
