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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by spriggy on April 13, 2007, at 13:52:01
So after 2 and a half years of being told I had 99 other things- I think we finally have a DEFNITE diagnosis and explanation for the different health issues I've had.
I'm not even 30 yet and I feel like my body is 80 years old!
Anyone here with Lymes' that has recovered?It looks like this will be a long haul sort of thing.
My dr. wants me on the antibiotics for at least 6 months- up to one year.
I am noticing some improvement but I wonder if I'll ever be back to normal (Re normal: Before the unnormal time of life).
I am just so sick of being sick. I remember a time when I was healthy, running 4 miles a day, did not have to visit a doctor office for years at a time.
Now, I'm lucky if I can go 2 weeks a time between visits.
I remember a time before I had to take ONE single prescription or pill..
Now, I can't keep up with my daily meds.
*SIGH*
Tell me there really is light at the end of this tunnel???
I think there is.. but I guess knowing someone else has come out of this tunnel and is already living in that light, will bring me some comfort!
Thanks!
Posted by Phillipa on April 13, 2007, at 21:23:15
In reply to Lymes' disease... anyone?, posted by spriggy on April 13, 2007, at 13:52:01
Spriggy I don't know as I wonder if my problems are a result of the lymes and in NC they say only rocky mounted fever. The insurance companies are denying payment for longterm antibiotic treatment. I'll keep sending the newsletters. Love Phillipa/Jan
Posted by saturn on April 13, 2007, at 22:58:39
In reply to Lymes' disease... anyone?, posted by spriggy on April 13, 2007, at 13:52:01
Hi Spriggy.
A neurologist once told me that most people have a near-full to full recovery after one year of treatment.
He was also very skeptical about lyme disease diagnoses---because there are some docs who make a lot of money diagnosing and treating lyme disease when perhaps the diagnosis was not definitive.
Here's why: Lyme disease cannot be definitively diagnosed by blood tests alone...which many docs base their diagnoses on. If I understood him correctly it must be based on ELISA of synovial or cerebrospinal fluid.
This second part I'm not 100% sure of, but I am clear on the fact that he said most people have a practically full recovery in about a year of treatment (usually doxycycline for adults).
Good luck and good health!!!
Peace...Saturn.
Posted by Larry Hoover on April 14, 2007, at 9:32:44
In reply to Lymes' disease... anyone?, posted by spriggy on April 13, 2007, at 13:52:01
Posted by Larry Hoover on April 14, 2007, at 9:36:36
In reply to Lymes' disease... anyone?, posted by spriggy on April 13, 2007, at 13:52:01
Sorry about my previous post. I couldn't resist.
I think that one of the problems with this particular infection is that it can trick the body into being confused about what is self and what is foreign. That's why there's often a medical interest in the autoimmune responses, without recognizing the underlying infection.
It is possible that the autoimmune responses can persist long after the infection has been cleared. I think that's a separate management issue.
Lar
Posted by spriggy on April 14, 2007, at 14:22:21
In reply to Re: Lymes' disease... anyone? » spriggy, posted by Larry Hoover on April 14, 2007, at 9:36:36
Posted by spriggy on April 14, 2007, at 14:24:27
In reply to Re: Lymes' disease... anyone? » spriggy, posted by Larry Hoover on April 14, 2007, at 9:36:36
Posted by Phillipa on April 14, 2007, at 18:59:34
In reply to Re: Lymes' disease... anyone? » spriggy, posted by Larry Hoover on April 14, 2007, at 9:36:36
Lar so true my ANA at the time it was active was 2800 and something now it's last time checked l:l60 very low. And according to the health dept here and my infection control doc the Western blot is more accurate will always test positive for life. It has bands and a certain number have to be positive for a deinitive diagnosis. Love Phillipa Spriggy hope your're getting the lymes news letters still. And hopefully you feel much better. Love Phillipa
Posted by Fivefires on April 14, 2007, at 20:15:58
In reply to how about.. ' Got Lymes?' (nm), posted by spriggy on April 14, 2007, at 14:24:27
That's good too!
A couple good chuckles is just what I needed!
I've been 'ill all week w/ bad stomachache since d.c. Zelnorm'.
If it isn't one, it's a freakin' other!
Hopefully your doc is 'right on' and antibiotics clear things up 4u Spriggy.
I've got a spot on the top of my head that will not heal. Do u think I was bitten by a 'bad bug' ? , 'cuz ... 'I feel bad'. (Not making fun, truly wonder what is?)
I keep forgetting to show it to PCP; maybe 'cuz it's on top of my head.(?)
Tried to find a lab here, but gotta' head towards civilization this next week for celiac, B12, thyroid, more.
takecare, 5f
Posted by fayeroe on April 17, 2007, at 18:56:46
In reply to Lymes' disease... anyone?, posted by spriggy on April 13, 2007, at 13:52:01
spriggy, i've had Rocky Mountain Spotted Tick Fever twice and the last time was really, really bad. i understand your frustration with the doctor visits and meds.......also, what Larry said about the immune problems is so true. it is a different issue and i will probably suffer from that the rest of my life. BUT, i've quit having "episodes" of killer headaches that put me in bed for 72 hours. it's been 6 years since i had RMSTF and the neurologist told me that the main symptoms would probably take a couple of years to pass and she was right.
i'm so sorry that you have Lymes. and i'm glad you finally have a diagnosis. i have never figured out why it takes so long to DX Lymes. they tested me for that along with the RMSTF........thank goodness you're on antibiotics now. i think you'll gradually feel better and better.........good luck, pat
Posted by sandyann on July 4, 2007, at 13:39:44
In reply to Re: Lymes' disease... anyone? » spriggy, posted by Phillipa on April 13, 2007, at 21:23:15
Well from what I have been told the western blot is the only test that is reliable.
According to the CDC it can be a clinical DX.
I went for 20 years with deep fatigue and I could not stay wake and different pain that would move around.I had the western blot from a lab that only does testing for tick diseases.
I had 10 bands on the IGG and IGM.
If you have antibioties for life then would that be the IGG and it would say recent or past infection and the IGM is current infection.
I might have the backwackwards.
The Drs that treat lyme are hard to find they lose there liscense or get into trouble and have to defend themselves.
I could be wrong but I can't imagine that any Dr would go out on the limb like that when they could make good money just being a ordinary MD.I tried the antibiotics for a 11/2 years and they didn't help much. I had to travel over 700 miles one way.
I do know that some of those bands on the western blot are for the borrelia germ only.
There is a lot about lyme that most drs don't know or don't want to know.
sandyann
Posted by Phillipa on July 4, 2007, at 22:15:05
In reply to Re: Lymes' disease... anyone? » Phillipa, posted by sandyann on July 4, 2007, at 13:39:44
I know the CDC doesn't want to pay for prolonged antibiotic treatment. But essentially the Western blot once you've had and been treated for the disease stays positive for life a titer like rubella. Love Phillipa ps are you the Sandy from before that we communicated back and forth and you were going to see a lyme expert? If so would you babblemail me I'd love to know the results. Thanks Love Phillipa
Posted by Fivefires on July 11, 2007, at 19:02:02
In reply to Re: Lymes' disease... anyone? » Phillipa, posted by sandyann on July 4, 2007, at 13:39:44
This is a stupid ? about Lyme's.
Does the tick leave a little piece of something inside you, beneath your skin?
5f
Posted by Fivefires on July 11, 2007, at 19:02:54
In reply to Re: Lymes' disease... anyone?, posted by Fivefires on July 11, 2007, at 19:02:02
I apologize for a stupid ? about such a serious illness.
sincerely, 5f
This is the end of the thread.
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