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 » Medical Questions » FEEL LIKE QUITTING:(

 - UBBFriend: Email this page to someone!    
Author Topic: FEEL LIKE QUITTING:(
kareamber
LymeNet Contributor
Member # 20110

Icon 4 posted      Profile for kareamber     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've only been diagnosed since July, but have been sick on and off for close to 3 years now. I took Ceftin for 3 months with very little to no improvement, and am now just started new abx Amox, azithromycin, and flagyl. Only been taking for 3 days now, and not like I should cause I'm also sick with the flu.

Sometimes I feel like quitting... I'm so frustrated and discouraged at the lack or improvement.

I still doubt my lyme diagnosis even with a tick bite history and test results. I'm so afraid I have something else and am taking all these meds for nothing.

My LLMd says he feels confident it's Lyme, however my GP says it's just a guess and I may have to live with these symptoms forever.

I've been tested for everything and nothing else came back abnormal, so lyme seems most like the most obvious culprit.

These symptoms are makng me depressed, and I want my old life back.

What should I do? What are the chances this really ISN'T lyme? Are my WB's enough to feel confident in the diagnosis?

I'm sorry, but I'm getting SO down.

Thanks for listening.

--------------------
IgeneX IGG POS 30+ 31++++ 41++
IGM 30+ 31+++ 34IND 41IND 83-93IND
Quest NEG IGG 30 and 41 only

Posts: 538 | From Everywhere | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917

Icon 1 posted      Profile for Jane2904     Send New Private Message       Edit/Delete Post   Reply With Quote 
Don't give up! It takes awhile for treatment to make a difference.

My 13 year old daughter has been sick with Lyme and co infections since the start of 2008. She was treated for 8 weeks for Lyme.

Then we were told it was her age, anxiety, etc, etc. As the doctors had no idea what was wrong.

Finally got to see a very good Lyme pediatrician this past May. He is treating Lyme, bart, Mycoplasma, Erhlichiosis.

We have seen some improvements since Mid August. She is not completely better, but doing ok.

It has been almost two years since this all began, and it has been a long battle, but one I refuse to give up!!! Please give your treatment more time.

I am sorry you are battling the flu on top of everything else. Take it easy and try and concentrate on getting better with the flu, Then try and take baby steps. Please take one day at a time. You'll get there [Smile]

Sending hugs

Posts: 1357 | From Massachusetts | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
jennyflyer
LymeNet Contributor
Member # 12792

Icon 1 posted      Profile for jennyflyer     Send New Private Message       Edit/Delete Post   Reply With Quote 
Kareamber, if you truly do doubt the diagnosis, then for your own peace of mind you may want to go for other testing and see other specialists.

I've had Lyme for 21 years now and when it started acting up bad again 5 years ago, I didn't want to believe that's what it was so I saw every specialist under the sun.

Then I finally accepted that it was the Lyme, but the point is this: The most important part of your treatment is your state of mind and if you have all this conflict within you, it will affect your treatment.

Also, it doesn't get much more conclusive than a WB positive test.

It's been over 2 years for me since I started treatment again and while I'm better than I was 3 years ago, I'm not without symptoms, most notably pain.

Some of us have to accept that we may never again be asymptomatic, but we can at least get to a point where we can manage it and not be bedridden most days. That may not be the answer we want, but it's what keeps us from losing our minds.

--------------------
Jennifer

Posts: 266 | From Ocean County, NJ | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
kareamber~ I second Jennifer's approach...test for other things, see other specialists and treat what is most obviously wrong...be that lyme or other tick borne pathogens, vit D deficiency or viral problems.

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
KS
LymeNet Contributor
Member # 12549

Icon 1 posted      Profile for KS     Send New Private Message       Edit/Delete Post   Reply With Quote 
Most of us here who have gotten well felt the same way you did. I can tell you that 3-4 months into treatment I doubted I would ever get better. After 20 months of treatment, I'm doing great!! Stick with it but as others suggested, be sure to rule out other potential causes while you continue to treat.
Posts: 561 | From mass | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
joalo
Frequent Contributor (1K+ posts)
Member # 12752

Icon 1 posted      Profile for joalo     Send New Private Message       Edit/Delete Post   Reply With Quote 
You could be herxing from the new abx that you started three days ago.

I always have a hopeless, depressed feeling when I herx.

Hang in there! I doubted my diagnosis and wanted to quit in the beginning also.

We understand. [hi]

--------------------
Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006.

Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
kareamber
LymeNet Contributor
Member # 20110

Icon 1 posted      Profile for kareamber     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have seen other specialists, 2 neuros, 2 Rheum, ENT, etc... Everything is normal.

--------------------
IgeneX IGG POS 30+ 31++++ 41++
IGM 30+ 31+++ 34IND 41IND 83-93IND
Quest NEG IGG 30 and 41 only

Posts: 538 | From Everywhere | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
Have you been tested for HHV-6, EBV, enterovirus? Enterovirus should be tested at ARUP lab, HHV-6, EBV and other pathogens (Cpn) at Focus Lab.

See: www.hhv-6foundation.org and www.enterovirusfoundation.org for more info.

Were you tested for other tick borne pathogens? Babesia, Bartonella, etc?

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
sonee123
LymeNet Contributor
Member # 18632

Icon 1 posted      Profile for sonee123     Send New Private Message       Edit/Delete Post   Reply With Quote 
Timaca...

How do i ask to be tested for the viral infections your talking about? I know you brought that to my attention as well and i do want to get tested for it.

--------------------
May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen.

Posts: 341 | From Columbia, MD | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
kareamber
LymeNet Contributor
Member # 20110

Icon 1 posted      Profile for kareamber     Send New Private Message       Edit/Delete Post   Reply With Quote 
Timaca,
I was tested for EBV, but I'm not sure about the others. I tested POS for EBV, but my dr said it was an old infection. My LLMD hasn't yet tested me for coinfections either.

--------------------
IgeneX IGG POS 30+ 31++++ 41++
IGM 30+ 31+++ 34IND 41IND 83-93IND
Quest NEG IGG 30 and 41 only

Posts: 538 | From Everywhere | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
Kareamber~ High antibody titers to EBV may indicate active, chronic infection, not past infection.

Here is a link to an article about chronic EBV infection:

http://www3.interscience.wiley.com/cgi-bin/fulltext/111088889/PDFSTART

These authors find EBV VCA IgG of >=1:640 and EA of >=1:160 in patients with chronic active EBV infection (CAEBV).

This link gives additional info:

http://www.vicd.info/testing.html

Dr. Montoya's criteria for participation in his recent research is at this link:

http://clinicaltrials.gov/ct/show/NCT00478465?order=1

The criteria he used is:

Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).

Sonee123: Ask your doctor to test you. Enterovirus should be run through ARUP lab in Salt Lake City. Here is some info:
http://www.enterovirusfoundation.org/chronicinfections.shtml

Scroll down to the bullet points. Those are the tests you want.

For HHV-6, EBV and Cpn, I get tested at Focus Diagnostics Lab. Here is some info. You will need to sign in to read the posts:

http://hhv6foundation.proboards.com/index.cgi?board=testing&action=display&thread=26

Test for everything you can afford and your doctors can think of. Treat what is most obviously wrong.

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  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.