I had to see a new Neuro today b/c the one I was seeing closed his practice. She basically said that an Infectious Disease Dr. said I didn't have Lyme disease so she agrees with that diagnosis and what could she do for me. I tried to tell her that I have two positive western blot tests for LD but she didn't give me a chance. She gave me a neuro exam and even tho I couldn't do half the stuff she asked me to do she said it was psychological in nature and there was nothing she could do for me.
I was so hurt, frustrated and left in tears. What do I do now. I live in Western PA and need to find a good LLMD and don't suggest Dr. J as he treated me for 2 years and since I am not getting better refered me to a specialist in NY. It costs too much to see that specialist so I need someone in Eastern PA.... any and all help and support would be appreciated.
Posted by bejoy (Member # 11129) on :
I am so so sorry you were treated that way. Lyme meningitis is in your head, but not the way they are saying. One day that behavior will be considered malpractice!
ERRRR! You deserve good quality care right now!
Have you also posted in seeking a doctor, in case those who know PA LLMD's don't read this post?
Are you able to read much? In the mean time, until you find somebody in your area to help you, have you/can you read the ILADS protocol, Dr. K's protocol on neural therapy.com, and Beuhner's Healing Lyme?
There might be some new things in those resources you can do to support your own healing, while you work on getting hooked up with an MD who can help you.
Posted by lynnic86 (Member # 3634) on :
Thank you for the information. I have to admit that I have been sick for so long that I have tried to just forget about this disease but it won't let me. I am not up to date with all the latest protocols and info so thank you. I will check them out. Where do I find the info on Dr. K??
Posted by Lymetoo (Member # 743) on :
Do you NEED a neuro? They're all worthless, if you ask me.
I'll PM you.
Posted by jamescase20 (Member # 14124) on :
OMG, so pathitic, like we know though, these ducks are being lied too. Its so sad. There stupid, but there not being told the truth either. Glad CT got that letter out today. I had to self treat here, I know what your going though. I was made fun of for 32 yrs, hypocondriate here, yeah no, just lyme bart and babs. Well, you have options. Good luck to you.
Posted by bejoy (Member # 11129) on :
There are many other good resources out there, but these are my favorites. The more you know, the more you can get out of treatment, even by an expert. Good luck!
Posted by METALLlC BLUE (Member # 6628) on :
Sorry about your encounter. However, keep all the results. Get copies. "negative" tests often have away of becoming valuable later when seeing other specialists, especially a doctor who specializes in Lyme Disease.
If you need help finding one, contact me.
Posted by njlymemom (Member # 15088) on :
what you are going through is so unfair....and demoralizing
i had the same visits with neuro's until i took a stand and didn't go to them anymore
we know ourselves better than we think...I believe that docs who undermine their patients in this way are more than just ill informed ....what happened to the oath they took?
i agree....some day in the future your treatment and the treatment that most of us have experienced will be grounds for malpractice
but until then....you need to find a llmd
best wishes to you
Posted by justwondering (Member # 12813) on :
You aren't alone.
I was told by a Neuro that I was "a bright young woman with terrible anxiety."
Not to mention all the other specialists who degraded and/or ignored me for years.
Move on and hang in there:)
Posted by AZURE WISH (Member # 804) on :
Sadly most of us have suffered abusive behavior from a list of drs before we got a diagnosis or treatment. It is unacceptable that it happens at all - Unforgiveable that it is the norm
I hope you now have the name of a llmd. if not please post in seeking a dr. Posted by christinelyme2 (Member # 15028) on :
Hi all! I know what that is like, I was told by two
doctors and a hospital that I have MS. My LLMD said
they are wrong it mimics it so closely. He said they
don't have enough knowledge about lyme to diagnose.
you pretty much have to treat yourself. Posted by bettyg (Member # 6147) on :
LYNN, i'm so sorry for the way you were treated and not believed!
since you've been a long time member but don't post much, would you be interested in this?
WELCOME, would you like a FREE copy of my newbie package of 118 pages info galore sent by a PRIVATE MESSAGE here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you! **********************
Posted by Munch (Member # 11323) on :
If it's in your head then how could it be in mine?
I made it up first in 1969 at age 11 after a trip to the Ozarks. So how could you make it up too?
Are we all sending out the same symptoms to each other via a psychic connection in the universe ala "The Secret"?
How do we all do this? Are we medical psychics?
For once...
Couldn't it just be the multiple strains of bacteria have the SAME effect on everyone?
Why can't doctors simply say...
"We don't know why or how that happens in some people yet."
OR
"We simply don't know the cure yet."
OR
"We simply don't have any treatments for this yet but you can try this to treat your symptoms."
Why blame the patient? It's demeaning.
So sorry you were dismissed in this way, Lynnic86.
Posted by lynnic86 (Member # 3634) on :
YOU GUYS ARE ALL WONDERFUL!!
I really needed to hear that you were on my side and as always you came thru.
Thank you also for all the new information. I have been busy looking at it all.
It would be nice if the drs would stop doing this to us but I guess it's going to be a long road still.
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