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 » Could this be a relapse?

 - UBBFriend: Email this page to someone!    
Author Topic: Could this be a relapse?
hopeful4
LymeNet Contributor
Member # 8486

Icon 1 posted      Profile for hopeful4     Send New Private Message       Edit/Delete Post   Reply With Quote 
How do you detect a relapse after extensive treatment?

If the CD57 is in a good range according to doctor (I don't have the number right now), can a person still be having a relapse?

Persistent, increased symptoms of fatigue, sleep disorder, memory loss, confusion, light sensitivity, tinnitus, not fully alert all day, disorganized.

Could it be neuro-lyme? What is next step, possible IV treatment?

Thank you.

[ 08-24-2012, 01:22 PM: Message edited by: hopeful4 ]

Posts: 873 | From WA | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
Life+Lyme
LymeNet Contributor
Member # 33568

Icon 1 posted      Profile for Life+Lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have been to many well-known LLMD's who repeatedly say they base improvement or relapses based on clinical presentations more than the CD57. They say it is a good initial indicator, but it cannot be depended on to track progress. It can be a very deceptive level.

Sounds like neuro-lyme (Bart?). How long have you been sick? How long was your treatment course? IV's are good for neuro things.

--------------------
You name it, I've got it.
Full-time medical anomaly.

Posts: 432 | From Southeast | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
To find out if you have relapsed after stopping treatment, my lyme doc does an antibiotic challenge. Then, tests the urine to see if any dead lyme is found in it.

You take a short round of antibiotics known to kill lyme. Then, using a test kit, you test your first morning's urine for a number of days. You send that off to the lab and they report what they have found.

I believe the test is called the LUAT (lyme urine antigen test).

That's what my lyme doc did on me 6 years ago when I was afraid I was relapsing. It was negative for lyme.

I got rid of lyme over 7 years ago.

My doctor told me signs to look for that indicate a relapse. One was migrating pains, meaning first this hurts, then that hurts, etc.

Also, look for a 4 week cycle of symptoms getting worse (the waxing and waning of lyme symptoms every 4 weeks).

If you have relapsed, you don't necessarily need IV treatment. You may just need to go back on oral treatment.

For example, if you failed to treat/adequately treat a coinfection, then you have to go back and treat it. You will also have to treat lyme again, but likely just for a short period of time.

If you follow the Burrascano Guidelines, then you should be doing one hour of weightlifting every other day. This boosts your immune system and goes a long way to preventing a relapse. I believe this was key in my recovery.

"LYME DISEASE REHABILITATION

Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission." (page 31)

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Also, I would not drink or smoke as these weaken the immune system so that it cannot keep lyme under control.

Finally, you may want to compare your treatment to the Burrascano Guidelines. If you doc didn't treat you for the cyst form of lyme, or if your dosages do not compare favorably to what Burrascano requires (too low of a dose, in other words), or if the coinfections were not all addressed, then you likely relapsed because of inadequate lyme treatment.

You can be on years of high dose antibiotics and still be on inadequate lyme treatment. That was the case with me.

The time I thought I was relapsing, it turned out to be menopause instead. Hope it turns out that it is not lyme in your case also.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  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 
I THINK the LUAT is now called the LymeDot... Igenex. But even when I was sick, mine was negative. I did the test early in treatment.

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

Posts: 95452 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
hopeful4
LymeNet Contributor
Member # 8486

Icon 1 posted      Profile for hopeful4     Send New Private Message       Edit/Delete Post   Reply With Quote 
It is not me having the relapse, a friend. He became symptomatic about 7 years ago, was diagnosed and started treatment about 6 years ago. Was on many different antibiotic combos, and did some IV rocephin treatments, along with supplement/herbs.

Have not heard of the LUAT, but will suggest that he speak to his LLMD about it. Will also review the Dr. B. guidelines. Drinking and smoking given up years ago!

Its hard to rely on most lyme testing, and seems important to go back to relying on clinical picture.

Also looking at testing hormonal levels and neurotransmitters. There is a newer test out by Pharmasan Labs, Inc. It tests levels of neurotransmitters such as serotonin, GABA, Dopamine, Glutamate, Epinephrine, and others to determine if there are insufficient levels playing a role in his symptoms.

Thanks for your support.

Posts: 873 | From WA | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077

Icon 1 posted      Profile for CherylSue     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks, good info.
Posts: 1954 | From Illinois | Registered: Aug 2007  |  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.