posted
Can anyone tell me why I keep hearing that LB and co are treatable and people get well but so many of the members of this forum have been treated for lengthy periods of time and are still not well.
I'm waiting for test results to come back from Igenex but I'm worried that it won't really matter because there doesn't seem to be much hope based on what I read here. People are being treated for things they suspect but aren't sure about, spending everything they have but never coming to a resolution.
I don't have hundreds of thousands of dollars to spend on treatment that may or may not have any effect.
Maybe I have a chance to get better but maybe not.
Very discouraged and worried.
Posts: 199 | From utah | Registered: Jan 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
LD can be cured, some call it remission. Yes it can take a long time, but people do get well. The reason you don't see them here is because they have moved on with their lives. There are some success stories posted if you look for them.
You shouldn't put too much faith in the test since they are not very accurate. Just find a good LLMD and get a clincal diagnosis.
It's not a matter of maybe you have a chance to get better and maybe not. Without treatment you could possibly become paralized or worse. And I know you don't want to be ill for the rest of your life.
I understand the feelings of discouragment and worry. We all do. But there is a lot of support for you here if you want it.
You say people are treating for things they suspect but aren't sure of......well, many illnesses are treated based on a clincial diagnosis. You should look at a list of LD symptoms and see if you think you fit into that catagory. Of course first you should have other things ruled out. That is what most of us have already done. We have been to many doctors sometimes over a period of years and Lyme is the most obvious diagnosis in the end. And so we treat it and we do get better. And yes it does take time, because no one got it right in the beginning.
I'm sorry that you had to find yourself here facing this horrible illness, but just know that there is hope. People really do get better.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Sorry you have the LD worry. Lyme is onr of those diseases for which there are no pat answers as of yet.
However, there is no reason to be afraid and let this ruin your life. People have been cured so there is hope. The key is to be proactive with this thing. Get a good LLMD. Research and learn as much as you can. You'll get some of the best information ai support groups like this. You'll mrrt a lot of wonderful and supporting people. Get to know your body - it will tell you a lot.
Perhaps as important as anything is to keep a positive attitude. There's nothing to fear. This is just a bump in the road.
All the best. Posts: 51 | From Reno, NV | Registered: Dec 2008
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posted
I've been to fifty or more drs since 2000 and have eliminated just about everything except LB. That's probably what compounds the discouragement.
The chance of getting a LLMD in Utah is about 0 and financially I have not the ability to go to where there is one, besides I would still have to be treated where I live.
I'm stuck with a PCP who has Dr. B's guidelines in hand but has never treated an LB patient and insurance that makes it very difficult to get very much.
How can anyone help with that?
Posts: 199 | From utah | Registered: Jan 2009
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bettyg
Unregistered
posted
willis, check your profile for utah info i just sent you.
i too was seen by 40-50 drs. before I WAS THE ONE to get me correct lyme diagnosis.
your 1st post; you were told this by INFECTIOUS DISEASE DRS!! that's why...
read/print the FINANCIAL BURDEN info i gave you in my welcome letter to you ok.
we feel the same frustrations you do; been there done that by majority on this board.
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