LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » My Dr.s Think I'm nuts for wanting a lyme test

 - UBBFriend: Email this page to someone!    
Author Topic: My Dr.s Think I'm nuts for wanting a lyme test
Beca
Member
Member # 10317

Icon 1 posted      Profile for Beca     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have CT's MRI's,EEG,EMG,X-rays,and seen a PT and now going to see a shrink. Because no one can find out what is wrong. My Nero. says it stress. What ever. I have ask her to do a lyme test and with she did but was not happy about it. My ? is how often do they come back right. Form the research I have done it looks like it more often than not a false neg. Is this true or has there been better test come out. I have had symptoms for 5+ yrs that no one could pin point why. Tired, joint & muscle pain, heart palpations, asthma like resp. problems and now Nero. And still no Dr can tell me why. So they just say stress and I can not except that. Please Help Me. Or am I just crazy.
Thanks
Beca

Posts: 26 | From Mechanicanicsville Va | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
jggrl
Member
Member # 9470

Icon 1 posted      Profile for jggrl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Beca, [hi]
First off YOU ARE NOT CRAZY! Most of us here have experienced that sort of attitude from doctors who just don't (or won't) understand what's going on. [Roll Eyes] So don't let them convince you of it.

I'm so glad you found here and came asking questions. I am not as knowlegeable in lyme as some of the others here, but my understanding is that many, MANY of the tests especially ELISA and ?western blot? come back with false negatives. Most folks around here recommend doing more detailed screening/testing through places like IGENEX in California. However, even those can be elusive. Lyme disease is a CLINICAL diagnosis, NOT a laboratory one because NO blood tests out there today are accurate enough to give a difinitive answer. Don't let any of those doctors convince you otherwise.

Your symptoms do look like they could be Lyme. What's even more suggestive of Lyme is that you've gone so long without anyone being able to figure it out. Unfortunately, that's very common.

First thing I'd suggest you do is believe in yourself and your gut and know that we're here for you when you have questions or just need to vent [Wink]

Second thing I'd say to do ASAP is go to the "Seeking a doctor" section of the forum (if you haven't already) and post a new topic looking for LLMD's (Lime Literate MD's) in your area. Hopefully you'll get some names pretty quick and when you do I'd really encourage you to get yourself on over there! If it is Lyme, and your symptoms are characteristic of Lyme, the best way to get yourself diagnosed, treated, and better is to work with an LLMD. Other doctors just don't know enough about what they're doing, and working with them is stressful and sometimes degratory.

Next, just keep searching and asking questions. Know that inevitably YOU have a right to be in control of YOUR care and YOUR healing. Don't let doctors who want to belittle you get to you. (I know, easier said then done) But really, it's you who should be in charge of...well, you.

Hang in there and keep fighting to figure this out! Try to surround yourself with people who love and support you and remove (as much as you can) negative influences from your life. You will beat this! Good luck and keep us posted! [group hug]

P.S. Another useful thing to look at is the "newbie links page" we have here, but I don't know how to link to it yet. It gives more detailed info on Lyme, etc, so hopefully someone else will get on this thread and link it. If not, I'll try and figure it out.

Posts: 89 | From UT | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
cbb
Frequent Contributor (1K+ posts)
Member # 788

Icon 1 posted      Profile for cbb     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Beca,
Welcome to LymeNet!!
So glad you found this group.
I can never say "Thank you" enough for all they've done to help me.

Don't have a medical background, but lots of experience with Lyme & Co-Infections.
Sounds as if you're on the right track.

I was a little confused about your Lyme test.
Could you give us a little more info?
Have you had the test done yet?
What lab?
When will the results be back?

You've received good info from jggrl.

I think it's important to print a copy of
"Diagnostic Hints & Treatment Guidelines..." at
www.ilads.org/burrascano_0905.html
Excellent info from a great LLMD !!!

Posts: 4638 | From South Carolina | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Begin your search for a REAL MD, one who treats Lyme patients on a regular basis.

Get a WEstern Blot from Igenex Labs in CA.

Then get well!!

Dump the neuro, for sure!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95882 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 6 posted            Edit/Delete Post   Reply With Quote 
Beca, forgot to say I'm sending by private message, pm, my 19 pages of newbie links/advise.
Bettyg [Big Grin]

quote:
Originally posted by Beca:

I have CT's MRI's,EEG,EMG,X-rays,and seen a PT and now going to see a shrink. Because no one can find out what is wrong. My Nero. says it stress. What ever.

I have ask her to do a lyme test and with she did but was not happy about it. My ? is how often do they come back right.

Form the research I have done it looks like it more often than not a false neg. Is this true or has there been better test come out. I

have had symptoms for 5+ yrs that no one could pin point why. Tired, joint & muscle pain, heart palpations, asthma like resp. problems and now Nero.

And still no Dr can tell me why. So they just say stress and I can not except that. Please Help Me. Or am I just crazy.anks
Beca


IP: Logged | Report this post to a Moderator
just don
Frequent Contributor (1K+ posts)
Member # 1129

Icon 1 posted      Profile for just don     Send New Private Message       Edit/Delete Post   Reply With Quote 
What was 'almost' said I wish to emphasis. Dont bother having that present doc test you. Even doing the test, handling and 'where' to send it and WHEN are all specalized LLMD info to get a better chance at the 'right' results. And even then , a GOOD LLMD will treat you based on clinicial dx instead of say"told ya so, you cant possibly have it see(waves test in face)" when the results of a GOOD test read by a LLMD is indeed very positive.
With the NEW guidelines tho, soon we will NOT have that luxury. The IDSA guidelines sound like they are going to set back treatments for lymies by the thousands, get there first and prove them wrong!!!My 2 cents(pretax) from --just don--

--------------------
just don

Posts: 4548 | From Middle of midwest | Registered: May 2001  |  IP: Logged | Report this post to a Moderator
national catastrophe
Member
Member # 10011

Icon 1 posted      Profile for national catastrophe     Send New Private Message       Edit/Delete Post   Reply With Quote 
Dump the ducks
skip the shrink
find a LLMD, though Lymenet, if possible.

I let them walk all over me for decades before I got the correct diagnosis. I suggest you learn from my mistakes. Find your strength faster than I did.

Posts: 57 | From the middle of a pandemic | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
robi
Frequent Contributor (1K+ posts)
Member # 5547

Icon 1 posted      Profile for robi     Send New Private Message       Edit/Delete Post   Reply With Quote 
Becca,

You are not crazy! I am in the same area and found no help locally.......... You need to find an LLMD to help you. Have you posted in Seeking a doctor on the other part of this board? I will try to help you find someone. You can Private message me f you would like.

robi

--------------------
Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy'

Posts: 2503 | From here | Registered: Apr 2004  |  IP: Logged | Report this post to a Moderator
deepdig
Member
Member # 9226

Icon 1 posted      Profile for deepdig     Send New Private Message       Edit/Delete Post   Reply With Quote 
Becca.... Time to put on the FULL METAL JACKET..

Meaning THIS IS THE MOST CRITICAL POINT in getting better or getting sicker.

Please push to find an LLMD.

I ended up starring at a shrink for 15 years, while the spirochetes screwed into my brain.

Instead of ABX.. I got..Imiparine, 8 years of Effexor, Paxil, klonopin, Xanex, Celexa, Adderrall, Serozone, and others I cant even remember...

6 months ago I got bit again..and was completely crushed by lyme...The Doctors reacted EXACTLY the same as 15 years ago ..MRI LP yadda...

The top ID MD in CT said "you got bit by a Nymph phase tic You couldnt possibly have lyme."

Somehow..I found Lymenet: During the worst nuero symptoms.

3 members Pm'd me and many others posted to my symptoms..within 24hrs I contacted a top LLMD in CT.and had a Genx kit being mailed to me..

120+ days into ABX and supplements + A good LLMD has given me a fighting Edge to this Horrific, Debasing, mind crushing, epidemic disease.

BE STRONG..GOD Bless.. and thank you Lymenet members for putting me on the path to Take Back my life.

Posts: 30 | From conn. | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Beca
Member
Member # 10317

Icon 1 posted      Profile for Beca     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all for all the info I am looking for a lyme Dr. I have been in the medical feild fro 12yrs but lyme is not talked about much so it is new to me. When I started to fall apart and the Dr's just told me I was stressed I just could not except it. I know something is wrong.

I started looking. I have so many symptoms that match lyme. I have been biten by more ticks than I can count and never put 2 and 2 together until now but my Dr's are so hard to deal with. I will admit I do have some what of an attitude if I keep telling you something and you act like you are not listening.


[ 14. October 2006, 12:34 AM: Message edited by: Beca ]

Posts: 26 | From Mechanicanicsville Va | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
tdtid
Frequent Contributor (1K+ posts)
Member # 10276

Icon 1 posted      Profile for tdtid     Send New Private Message       Edit/Delete Post   Reply With Quote 
Beca,
I'm pretty new at this too, but wanted to tell you that even as a newbie myself, I'm finding we are far from alone.

I have struggled with my "mystery illness" for almost five years now and my GP had me going to three different neurologists and even has a fourth one being set up.

I have a rheumotologist, endocrinologist, psychiatrist, physiatrist, pain management, and a list of natutural pathic practices galore to stop the pain or insane symptoms.

I had been tested with the Elisa test twice, once being in the ER.

Both were negative so I never gave lyme another thought since I kept hearing m.s., lupus, fibro, you name it, but it was always qualified by "but I think something else is going on with it".

Luckily my naturopathic doctor told me the Elisa's were not that accurate and HE suggested a lyme specialist after helping with fibro symptoms when I first started seeing him.

But as he watched it unfold, he hooked me up with a Lyme specialist and it just happened to be on these lists, so I'm in the beginning phases.

I've had the lyme and co infections lab work on Monday so I'm in waiting mode but was also told it is as much about the symptoms which they agree is very lyme looking.

Sooooooo......I do wish us both luck in finding our answers to what the heck is wrong after all these years.

The people here have offered wonderful advice and I'm so glad to have been told about this place.

Cathy

[ 14. October 2006, 06:58 PM: Message edited by: tdtid ]

--------------------
"To Dream The Impossible Dream" Man of La Mancha

Posts: 2638 | From New Hampshire | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Beca
Member
Member # 10317

Icon 1 posted      Profile for Beca     Send New Private Message       Edit/Delete Post   Reply With Quote 
I hope you find the anwsers you are looking for. My Dr's are not in to testing for lyme.

I was told from a nero. doc. on another forum that if I am put on antibiotics before a lyme test is done my chances are better to get a true pos. reading if that is what it is. Also I would feel like I was hit by a truck with in 2 to 3 days of being on them.

So if the test I just got done comes back neg I am going to talk to my nero about it and she what she says. I do know that I had a infection I a tooth and started to take my antibiotics for it and I was so tired I could barely get out of bed.

But I don't know ant that was before I talked to the online nero doc.
Good Luck
&
God Bless
Beca

Posts: 26 | From Mechanicanicsville Va | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130

Icon 1 posted      Profile for lymie tony z     Send New Private Message       Edit/Delete Post   Reply With Quote 
Beca,
What you experienced when you took antibiotics for your infected tooth was a Jarosch Herxeimer effect.

This is a worsening of symptoms or lyme brought on by antibiotics killing them as they die they release toxins into your body which make you sick.

The only symptom you had was weakness or sleepiness because the dose of antibiotic was insufficient to kill off a lot of the bacillus.

Whenever you get an adequate dose for massive killoff you will experience more violent herx.

When you see your ducks, explain this reaction to antibiotics and remind them of what they may not have learned in med school about killing spirochetes. Spirochetes, which caused syphilis and whence the term for Jarosch Herxheimer reaction was first attributed. The two researchers who first coined this terminology.

zman [Roll Eyes]

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Beca
Member
Member # 10317

Icon 1 posted      Profile for Beca     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you for that info. I am going to be calling my nero this week and I will bring that up. One of the other memebers gave me the names of all

the llmd in Va so I can talk to someone that knows what there talking about. Its odd that I am id the medical field but I am lossing my faith in them. I am going to try to get some sleep

tonight.
thanks for every thing
[Smile]
Beca

Posts: 26 | From Mechanicanicsville Va | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Beca
Member
Member # 10317

Icon 1 posted      Profile for Beca     Send New Private Message       Edit/Delete Post   Reply With Quote 
I called all the Dr's on the list that the on others on the fourm gave me there was only one on there that I was able to get a hold of that was taking new pt's had a waiting list and they put me on their waiting list it could take up to a year to see them. [Frown] All the others did not have working #'s or acted like I should not have called them
I am so discouraged.
Beca

Posts: 26 | From Mechanicanicsville Va | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
tory2457
LymeNet Contributor
Member # 10384

Icon 1 posted      Profile for tory2457     Send New Private Message       Edit/Delete Post   Reply With Quote 
I also need to jump in and tell you to be steadfast in getting tested for Lyme's but with a LLD. I finally did after 19 yrs of having MS ! I can't tell you how many buggers are in my system! Herxing? Yeah, I'm going to herx!
Run and don't stop until you get tested!! AND only at Igenex!
Think about injecting yourself with a drug for MS when it's really Lyme? My dear Dr should be forced to let me inject him/her with the same drug for doing that to me. !

Posts: 158 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Beca
Member
Member # 10317

Icon 1 posted      Profile for Beca     Send New Private Message       Edit/Delete Post   Reply With Quote 
I got my test results back they were neg. but I knew they would be. Because of the type of test they did and the Dr is not a LLMD.

I have be thinking about putting a time line together of my tick and symptom experience just to see how they coincide and show the Dr.

I am sure I will not remember all of them do to the fact I can not remember what happened 5min ago or yesterday my mind is gone any more (wonder were that's from (STRESS) [dizzy] right that isn't that what the Dr's tell you [confused] ) [Big Grin]

Any way I might have made some progress today. I talked my Nero in to referring me to a Dr that deals with Lyme but how well I don't know. [confused]

I will just have to see. Thanks to all out there for your support
Smiles
Beca

Posts: 26 | From Mechanicanicsville Va | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.