How did you feel when you were diagnosed?

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lymegreen

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I'm curious about this - for those of you that are dealing with Lyme disease personally, how did you feel when you got your diagnosis?

Was it a feeling of relief that there was finally an explanation as to why you had been feeling the way you had? Was it fear? Was it frustration? Maybe a mix of all of those? I want to hear about how you coped with getting the diagnosis and also how your family members dealt with it, too.
 
As far as I know I don't have Lyme (but been suspecting it for a while), but my cousin does. As a family we felt some relief when we found out why she was experiencing all those weird symptoms. But at the same time we felt a bit worried, because this disease seems to still confuse so many doctors and most seem so clueless...
 
As far as I know I don't have Lyme (but been suspecting it for a while), but my cousin does. As a family we felt some relief when we found out why she was experiencing all those weird symptoms. But at the same time we felt a bit worried, because this disease seems to still confuse so many doctors and most seem so clueless...

That's pretty much how my brother and sister in law are feeling right now. There's partial relief at the fact that it's been formally diagnosed, but I think they're frustrated it took so long to get to that point. It was over a year of back and forth with different doctors and specialists - it really does seem to be very misunderstood or just not really known about at all by a lot of doctors!
 
That's pretty much how my brother and sister in law are feeling right now. There's partial relief at the fact that it's been formally diagnosed, but I think they're frustrated it took so long to get to that point. It was over a year of back and forth with different doctors and specialists - it really does seem to be very misunderstood or just not really known about at all by a lot of doctors!

Getting this kind of diagnosis is what I call a ''bittersweet'' experience :( But I hope your niece is feeling better now? As long as they manage to tackle Lyme all is good :) I've heard about chronic Lyme and it sounds so bad. I hope your niece doesn't have to deal with that!
 
Getting this kind of diagnosis is what I call a ''bittersweet'' experience :( But I hope your niece is feeling better now? As long as they manage to tackle Lyme all is good :) I've heard about chronic Lyme and it sounds so bad. I hope your niece doesn't have to deal with that!

For my niece I feel like right now it comes and goes. She does sometimes just feel unwell, she gets some joint pain and stiffness...but I think it's being better managed now that her doctor is aware without a doubt that it's Lyme. You're right, bittersweet is the perfect word to use. It's frustrating and saddening, and sometimes causes worry - but I also think that knowing the situation is empowering too. It helps you better tackle it.
 
I was pretty panicked when I saw the bullseye rash. The rash covered most of my neck. I knew enough about Lyme disease to know it would be months and months of antibiotics. It's a really scary feeling. The doctors seemed really freaked out by it, too, which wasn't a good sign.

Now, with all the stuff I read about it never really going away, it makes me very wary. The side effects from all the antibiotics lasted over a year. I don't know what I'd do if I had to go through it all over again.
 
I was pretty panicked when I saw the bullseye rash. The rash covered most of my neck. I knew enough about Lyme disease to know it would be months and months of antibiotics. It's a really scary feeling. The doctors seemed really freaked out by it, too, which wasn't a good sign.

Now, with all the stuff I read about it never really going away, it makes me very wary. The side effects from all the antibiotics lasted over a year. I don't know what I'd do if I had to go through it all over again.

That is why it is such a terrible disease to have. Think about it this, not to diminish your situation, but you were basically a best case scenario, both yourself and your doctor recognized the sign, which was obvious. Many people don´t see the rash and don´t go to the doctor until after the rash has subsided. Also a lot of people have months, or even years of going back and forth to different doctors, nobody knowing what is going on.
 
Well I do not personally have it but work with those who do and I am always surprised at the resilience of people to accept the news. It does help that it is often led with the amount of options there are for treatment and things of that nature, which certainly helps ease the nerves a little bit. I would just assume that everyone is as petty as I am when it comes to taking bad news, but I am glad to report that the overwhelming majority are strong willed and tough people.
 
I was not diagnosed either and to be honest I feel that's the hardest part, to get a correct diagnose and start being treated for it.
 
I was not diagnosed either and to be honest I feel that's the hardest part, to get a correct diagnose and start being treated for it.

It seems to be the case for so many Lyme sufferers, that it takes a while to get to the conclusion that it is Lyme. I think slowly but surely we are getting more awareness out about the disease, and that's making people more aware of it, of ticks, and of checking after being outside (especially in the case of children, like my niece who was diagnosed with it).
 
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