posted
Ok, I've been to a ridiculous number of doctors since my relapse last July. I have scrolled through doctors faster than I fill my gas tank (well, not hard, since I am not allowed to drive ). 4 Neurologists, 1 ID, 3 "LLMDs", 2 ENTs, 1FP.
The most frustrating thing for me is that I keep hearing the same thing from physicians. Something along the lines of: Oh, it really sucks that you have chronic lyme. We might be able to restore you to some health, but you'll never get truly better. As for working, maybe part-time sometime waaaaay in the future.
I have finally ended up with a physician who treats me with some hope - that maybe I can get my life bac and return to work & sports and actually have some of the fun I've been missing for almost a year.
How many of you have had this experience? Is what they say true & I'm bouncing doctors for nothing except to drain my bank account?
Posts: 168 | From Delaware | Registered: Aug 2005
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
A good LLMD will not share desparate information such as "you will never get better". A good LLMD will say something like " I wont give up unless you do". So try not to settle for less than that
in a LLMD.. otherwise, WHY see that particular LLMD if they don't think that they can restore your good health?
And, yes, I have heard it myself from a "LLMD" of whom I no longer see. Basically, he said in a nutshell: You have chronic lyme, youre always going to have chronic lyme, so just take the antibiotics for the rest of YOUR LIFE when you flare.
LLMD my arse!
You WILL get better, don't let ANYONE tell you different. ( Especially yourself, because you are all that matters)
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
My LLMD says that I may never eradicate totally the disease but I feel as long as I continue to improve, then okay if I remain stable I'm thrilled. I had lyme dxd as MS since 1988.
So I'm easy to please...could be "way worse". I'm still making strides alothough not as fast as I wished but I'm still in the lyme marathon,wish recovery ws a sprint.
A relative of mine (by marraige) has a sister with lyme...she was in wheelchair with it, took 3 yars but improved so much she runs the Boston Marathon and the one in New York City.
I keep the hope.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Thanks for the hope. I just want to be able to do normal stuff again, like move around for 15 minutes without feeling exhausted.
My new doc has a better attitude, so I am keeping my fingers crossed. Wish me luck that I can return to the real world in a few months.
Posts: 168 | From Delaware | Registered: Aug 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
That is not true! You can get better, and you will as long as you are determined enough and keep fighting. Don't listen to those doctors, they are bringing you down, and they aren't you!
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I don't get it that a doctor could say that to you. Unless they are jerks.
They are supposed to be well educated and deserved their high pay for curing and saving life.
A doctor's responsibility is to save life even the disease is totally unknown and have no clue about therapy.
For Lyme, we have known alot and we know that abx will get them.
In human history, we have overcome a lot of deadly diseases.
With scientific progress, I believe that the cure for Lyme is comming soon.
Posts: 1078 | From Fairland | Registered: Apr 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Hi, Don't read this if you want a feel good response. sorry.
"We might be able to restore you to some health, but you'll never get truly better" for some is probably a pretty accurate statement.
It all depends on what is meant by "some health". If it means to be somewhat normal with some impairments then for the worse off cases this is likely the best that one can expect.
If you are declining and they say sorry there is nothing that we can try to reverse the decline, then it might be a good idea to find another Dr.
With this disease I have learned to be realistic about expectations, which is there are none. All you can do is try and hope for the best, you never know how bad or good tommorow will be. I have learned to do what I can today because maybe tommorow (or maybe the day after) I won't be able to do it.
On the other hand some people that were very bad are effectively normal and completely active with no visibile impairment, however, I would think that LLMD's that have seen enough patients can gauge the likely level of recovery that may be achieved. Still great things can happen so you can't rule it out totally.
I would save the money for treatment rather than searching for a Dr that can says you will be cured. Find a Dr that will try his best.
Sorry for being so blunt, but as indicated I have have learned to temper my expectations after being knocked back so many times. It is just a matter of refocusing your expectations to something that is more short term.
At least thats what i think at this late hour.
Posts: 1184 | From north america | Registered: Feb 2003
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Don't listen to the Prophets of Doom, please. Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Ultimately, we are responsible for our "wellness".
As lyme patients we must break the paradigm the doctor has power...we all have learned the hard way that lyme is too complex for most docs and there is too much still unknown.
So be you own doc and find an MD to collaborate with. There aren't enough years in our lives to try all the various remedies for lyme.
Keep openminded to naturopathic remedies, spiritual forces and good old perserverence.
We are our best ally here. Don't give away your power.
-------------------- We are spiritual beings on a human journey...
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Hmmm, my husband and I talk about realistic expectations all the time. I thought I was being realistic in thinking in about a year from my 1st treatment, I would be able to return to work in some capacity & that maybe in 2 years, I would be able to be full-time again.
So, here I am 9 months later, in the same state as I was when I went on disability. That is the frustration that I am feeling & the reason I keep changing docs. It's not about the treatment, but about the attitude. I've given my docs a chance - at least 3 months each to come up with a game plan & focus on a better future. But, each time, they throw up their hands in disgust when I am not getting any better, I feel it's time to move.
I don't know if I'm doing the right thing. I do know that I'm frustrated, confused & tired of feeling so useless. All I want is my life back - I'm not asking to be able to climb mountains again, but to be able to climb 4 flights of stairs without needing a 2 hour nap afterwards. Posts: 168 | From Delaware | Registered: Aug 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
It takes the body 16 months to rotate every cell its gona be at least that long if everything goes right.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I have been infected for 18 years.
I have only been on "serious" antibiotic treatment for 14 months. I do not plan on giving up on the antibiotics until the symptoms are gone. My doctor doesn't plan to either.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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What amazes me is these docs, who know very little about Lyme, have the arrogance to say you will not get better. When did the uninformed become spokes people for us.
If they do not know how to diagnose and treat how could they possibly know if you will get better!!!!!!!!!!!!!!!!!!
Listen to those that know and continue to fight and win.
Most people with Lyme DOOOOO get better. Those of us here are the minority.
Listen to TRUTH. Do not be deceived!!!!
Peace, BJG
Posts: 468 | From IL | Registered: Oct 2003
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). 4 Neurologists, 1 ID, 3 "LLMDs", 2 ENTs, 1FP. 
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