Anyone been to Johns-Hopkins?

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xoxoxox
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Date Joined Jan 2009
Total Posts : 22
   Posted 1/29/2009 5:58 PM (GMT -6)   
All of my Lyme tests have come back negative (Quest & Medical Diagnostics Laboratories) so of course, it has been difficult to get anything more than some oral Doxycycline. 100% of my issues can be found on the Lyme symtom list and about 50% of the symptoms on the list are ones I experience. Some things are commonly found with Lyme, like insomnia, burning prickly pain, joint pain, cognitive problems, etc. However, they are vague enough that they could represent some other problem. It's the ringing in the ears and the slackened muscles in my jaw that make me believe it's Lyme (unless someone has another thought?). Plus, I had what I think was the bulls-eye rash twelve years ago when living in Florida although it was never documented by a doctor.
 
I realize that my best bet is an LLMD but because I could hardly be considered well off, I have been trying to find a doctor that accepts my insurance who will get to the bottom of all of this. Also, any of the LLMDs I have looked into have said they would be unable to get me into see them for at least 2-3 months. That would be torture!
 
I do have an appointment with one of the Infectious Disease specialists at Johns-Hopkins and wondered what experiences people have had there. Please fill me in!
 
Thanks!
XOXOXOX

hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 1/29/2009 7:09 PM (GMT -6)   
I know of only one person who went there for Lyme Disease.

They evaluated her neuropathies and diagnosed them as ideopathic.

She found a Lyme doctor to treat her and can now walk w/o a limp.

I would keep the appointment anyway. Just be as stoic as you can. Many infectious disease doctors do not believe something called Chronic Lyme even exists, although they will, with great reluctance, recognize something called Post Lyme Disease Syndrome. We patients don't give a @#$ if they called it Rumpelstyskin's Worts Disease Post Blues Syndrome. We just want a cure. My bet is he won't prescribe antibiotics and will be somewhat huffy and holier than thou about it. My pat reply is this: "I didn't ask for antibiotics..." It's so funny that people would EVER troll for antibiotics -- , xanax - type drugs, yeah, maybe. Antibiotics!?! What a joke these docs are.

If you don't have Lyme, count your LUCKY STARS!

I have to tell you that the cure is unknown, although there are doctors who can get most people well, but not w/o a lot of work and a lot of trial and error.

It basically sucks. You don't want it. If you can get a diagnosis of something else, be grateful. Wouldn't wish this on my worst enemy.

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 1/29/2009 7:43 PM (GMT -6)   
They follow the IDSA guidelines. If your tests are negative, they will say you don't have Lyme.

Emphasize the bulls-eye rash.
14 years undiagnosed Lyme. I had a bulls-eye rash following a camping trip to NC in 1994. Swollen knees and replapsing and remitting vertigo followed for the next 14 years. All Lyme tests negative. Could possibly be B. lonestari due to being bit in the South.
Just began treatment with low dose Minocycline and Benicar on 12/08.
TGF B1 and C4a very high indicating inflammation.


bcaring
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Date Joined Feb 2006
Total Posts : 346
   Posted 1/30/2009 3:24 PM (GMT -6)   
Hi - welcome to the forum.

Not to discourage you to much, but I went to a physiologist who supposedly specialized in Fibromyalgia. It was a waste of time. That was in 2001 and no one suggested Lyme.

Then in in 2006 I went to a neurologist at John Hopkins to have my MRI looked at to see if I had MS. He said I didn't but he was not very interested or supportive of the possibility that the lesions were caused by Lyme, even though that was one of the possible diagnoses given by the radiologists reading it.
They do not diagnose Lyme, unless you meet CDC criteria, which most people do not.

Best of luck.
Beth

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 1/30/2009 6:16 PM (GMT -6)   
I had some positive bands  on Igenex but not enough to consider it CDC positive. I have gone round and around with doctors and unless you have a positive here they wont treat you. Have you ever done the test at Fry Lab? He said I was positive, he does treat people if you can get to Arizona. www.frylab.com  D

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 1/30/2009 6:23 PM (GMT -6)   

hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 1/30/2009 6:42 PM (GMT -6)   
I was treated after I had a positive test, but I was four months in and so it's chronic.

It's rare that any doctor will treat you with or without a positive test.

beths
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Date Joined Aug 2006
Total Posts : 690
   Posted 1/30/2009 8:11 PM (GMT -6)   
There are some other, non-LLmd around Baltimore who take insurance and treat based on symptoms-not long, but long enough to get you started until you see an LLMD-PM me and I can give you their names.

xoxoxox
Regular Member


Date Joined Jan 2009
Total Posts : 22
   Posted 1/31/2009 10:50 AM (GMT -6)   
Thanks to everyone for the posts regarding my inquiry around Johns-Hopkins.

The appt was yesterday. The doc asked for a very detailed history and gave a very thorough exam. His conclusion was that because my tests were negative and because I am no longer doing things that I enjoy that this is all from depression. When I brought up the controversy regarding the adequacy of the tests used, he looked down to the desk and said "I am unaware of anything like that." I was appalled! This guy is an Infectious Disease specialist at the #1 hospital in the country and he is telling me that he is unaware of any controversy in the testing for Lyme Disease?!!! I wanted to ask him how long had he practiced that line in front of the mirror.

While I agree that there probably is some depression now (who wouldn't have some after a year of pain with no diagnosis, no relief and no end in sight), depression is not the cause of this but a result. My life was going great until this wrecking ball started pounding away it. Twice now doctors have put me on anti-depressants and when I asked this doctor why the symptoms were still the same after being on them for a while, he suggested I try "Talk Therapy". I wanted to punch him.

Needless to say, my experience with Johns-Hopkins was a complete waste of time, gas & money as many of you predicted. At this point, I believe my only other option is to get the Igenex test done and find a way to pay for an LLMD.

Can I get some LLMD recommendations, preferably ones that can see me within a few weeks as opposed to a few months? I live just west of Philly and would be able to travel up to a couple of hours in any direction.

beths - you said to PM you for some names but I'm afraid I'm not sure what that means :) Could you let me know?

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 1/31/2009 11:20 AM (GMT -6)   
Here's a nearby support group.

http://www.yorkpalyme.org/index.htm

Don't feel bad.

I went to a well-known rheumatologist who said to me "YOu want to get well, stop seeing us." And "You have somatization disorder. Google that."

Now, if you're going to diagnose someone, would you not tell them what somatization disorder is?

As it turns out it's kind of a cross between obsessive compulsive disorder AND hypochondria.

Sucks to have lyme. Sucks to be sick. Sucks to be depressed and beat yourself up about being sick with something no one can diagnose.

At least you tried. That is a help in the bigger picture of Lyme disease.

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/31/2009 11:40 AM (GMT -6)   
I just had the exact experience with a doctor that I have been seeing for over two years. Because my Igenex was not CDC positive, he decided I was depressed and wanted to give me Cymbalta. Well, the ONLY thing that is depressing is his attitude! You just have to chuckle to yourself about their ingorance and move on. Dont let it get you down, just keep searching and you will find help and hopefully a doctor that will really listen.  Good luck  D

nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 1/31/2009 11:40 AM (GMT -6)   
You said: "I wanted to punch him."

I say: that in itself might be therapeutic! Instead of talk therapy, maybe punch therapy! devil

Seriously, I had the same experience: U. of Penn neurologists and lots of rx for anti-depressants prior. Lo and behold I finally got a positive Lyme, after treatment by an LLMD, and am about to 80% of former self. Hang in there and go see a reputable LLMD.

Best of luck!

John

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 1/31/2009 4:51 PM (GMT -6)   
What if...

He says "You're depressed."

You say "Yes, it's a big symptom of Lyme"

Infectious Disease doctors do NOT treat chronic Lyme Disease. They treat other diseases -- short term stuff MRSA maybe...I don't know what they do.

Haven't seen many posters who get treatment from them.

Let's just say most doctors suck.

The ones who send you packing to a shrink are one breed.

The LLMDs who seem to be fumbling in the dark for something to "help you feel better" are a lot nicer, but they don't have a cure.

WHERE IS THE RESEARCH?

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 1/31/2009 5:52 PM (GMT -6)   
I'm sorry you had such a horrible experience but unfortunately am not surprised.

I was able to get an appointment with a top lyme specialist in Manhattan in less than two weeks. I was originally told his first opening was in March but decided to call his office every day to see if there were any cancellations. The day after I made the appointment low and behold they just received a cancellation and my appointment was moved up to next week. From what I've read he's one of the best but does not accept insurance, as many don't. I have out-of-network benefits and am keeping my fingers crossed that I'll get at least some of it back. lol I'm not sure if I'm allowed to post his name so all I'm going to say is that his initials are BR and he is located in the East 70's in Manhattan and use to be located in CT. You should make an appointment with a lyme specialist near you and then use my strategy and call every day (or even twice a day) to check for cancellations.

Good luck.
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