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 » Possible Lyme Disease

 - UBBFriend: Email this page to someone!    
Author Topic: Possible Lyme Disease
Frank-incense
Member
Member # 42792

Icon 1 posted      Profile for Frank-incense     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here's my story.

I've experienced headaches, fatigue, ringing in the ears since I was young (early teens). My friends and I used to go hiking in canyons with no protection (t-shirts and shorts) and I went on several retreats to the mountains (Southern California). I do not remember any tick bites, but I used to get scratches and gashes from going through brush, but I was young and didn't know anything about ticks nor did I care. If I ever got bitten or got a rash I would not have known or cared.

In my mid teens I began experiencing depression, memory problems, worsened fatigue, muscle weakness, but I pushed through it. Gradually through my early teens and 20s my symptoms grew in number and severity. Flash to 2010: I was put on a prescription of Doxycycline for acne and I began experiencing pain in my jaw and mucous membrane dryness. The doctor suspected an allergic reaction, but the problems did not stop after discontinuation of treatment. (could have been a herx reaction?)

Here are my current symptoms, which no doctor has been able to resolve:

fatigue
dryness in mucous membranes
depression
insomnia
problems with concentration, memory, brain fog
tingling, numbness in extremedies
daily headaches
muscle pain in shoulders and neck, weakness in exremedies, twitching muscles
nasal problems
orthostatic hypotension
sexual problems (libido, ED)
tinnitus
transient chest pain
shortness of breath
back pain

I have been to tons of doctors and done tons of tests and I only found out I have a hiatal hernia and idiopathic gastroparesis. At least that explains my gastro issues. However, after much reading online I suspected Lyme and I went to an LLMD and he did an Igenex complete lyme panel (with complete co-infection panel).

IgM Western Blot: 41kDa+
IgG Western Blot: 41kDa+++, 39kDa IND
Multiplex PCR: Plasmid Bb POSITIVE, Confirmed by Southern Dot Blot

Negative for all co-infections.

The doctor (LLMD and ILADS member) called me back to say I have Lyme. However, my only positive test is the positive PCR test, which I know is prone to false positives. Quote:

"PCR assays detect DNA from dead or living organisms, do not demonstrate the presence of living organisms, and are prone to false positive results."

AND

"PCR positivity in seronegative patients suspected of having late manifestations of LB most likely represents a false-positive result."

I'm not sure what to do.

Posts: 10 | From California | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
LymeSwimmer
LymeNet Contributor
Member # 40540

Icon 1 posted      Profile for LymeSwimmer     Send New Private Message       Edit/Delete Post   Reply With Quote 
With a positive PCR test and an indeterminate for the 39kD (which is lyme specific) I would say you have a probable Lyme infection.

Looking at your symptoms - they include many of the things I have had with Lyme - so outside of the testing data, you have a strong set of symptoms to make a clinical diagnosis.

I would go ahead with Abx treatment and see if you have any improvements

Other things to consider looking at is food intolerances and mold sensitivity which can exacerbate and also cause these symptoms.

Prayers and thoughts for you

Posts: 118 | From New England | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
LymeSwimmer
LymeNet Contributor
Member # 40540

Icon 1 posted      Profile for LymeSwimmer     Send New Private Message       Edit/Delete Post   Reply With Quote 
Reading back through your post about having some reactions while on Doxy when you were younger.

A couple of times prior to figuring out it was Lyme, I had been put on Antibiotics (Abx) for things like ear infections, etc. and had similar reactions (pains in weird places, fevers, numbness, etc.)

...and in a few cases where the Abx was a little bit longer, say a week or two of Zith, I actually had moments where I could think better, fell better, etc.

Had no idea what is was at the time, but they were definitely herxs from Lyme kill off

Posts: 118 | From New England | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
t9im
Frequent Contributor (1K+ posts)
Member # 25489

Icon 1 posted      Profile for t9im   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Frank:

I agree with your LLMD based on the IgG. It shows exposure to the borrelia bacteria (41 is a spirochete, non specific to Lyme, 39 is Lyme borrelia specific).

Our daughter has never tested positive via CDC standards. At best she has only had 3 bands at any one time.

She did eventually culture positive after 3 years.

Add in your symptoms with the exposure confirmation and this is why your LLMD indicates you have Lyme.

--------------------
Tim

Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes!

Start treatment with your LLMD.

As your immune system recovers, and the abx help kill the Bb, there's a good chance your body will have more positive band on a wb.

But lyme is a clinical dx anyways, so a positive is not necessary.

Ah....the Pacific Coast....got me too, brother.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Frank-incense
Member
Member # 42792

Icon 1 posted      Profile for Frank-incense     Send New Private Message       Edit/Delete Post   Reply With Quote 
What really are the chances of a false positive PCR assay from Igenex? All the data I have seem to point to ha pretty high probability of a false positive. I just like to be sure before I go damaging my body with strong antibiotics.
Posts: 10 | From California | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Slim to none. IMO, you have lyme and company.

Most people usually get the tree Bs: borellia, bartonella and babesia. Your symptoms sound like you have all three. Lyme and company are best diagnosed clinically as the blood tests are highly fallible.

Greta is right, once you start treating the bands often pop up positive a few weeks or months later (through a standard lab).

Welcome to Lymenet! Lots of great info right here at your fingertips. There is a great book that explains lyme really well too: Cure Unknown, Weintraub.

Also, here is an award winning documentary that follows the lives of a handful of people with lyme (very informative).

http://topdocumentaryfilms.com/under-our-skin/

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5418 | From earth | Registered: Mar 2011  |  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 
quote:
Originally posted by Catgirl:

Slim to none. IMO, you have lyme and company.


-
Exactly. Slim to none.

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

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581

Icon 1 posted      Profile for WPinVA     Send New Private Message       Edit/Delete Post   Reply With Quote 
I don't know the answer to the question about the chance of a false positive PCR, but the thing is: you don't just have the PCR test. You also have positive bands on the Western blot, plus a lot of symptoms.

NONE of the tests for Lyme are perfect. That is why the dx is a clinical one, with the tests as aids.

The protocol here for a probable Lyme infection would be to do an antibiotics challenge. Start the abx, pay careful attention to your symptoms - whether they increase/decrease, recognizing that you may feel worse before you feel better. Some people find it helpful to keep a log to track symptoms.

Then you can decide based on this whether to continue. It's not like you're locked in just because you do a round or two of abx. Given how long you have suffered, it would seem to be worth strong consideration.

I understand how hard this is as we are in a similar situation with my son. In his case, his symptoms are much less glaring than yours and may have other causes. Our plan there is to pursue these other avenues, then if those don't pan out we would do an abx challenge.

Finally, be sure to take a good probiotic when you are on abx - at least 1-2 hours away from your abx. Good luck!

Posts: 1737 | From Virginia | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Razzle
Frequent Contributor (1K+ posts)
Member # 30398

Icon 1 posted      Profile for Razzle     Send New Private Message       Edit/Delete Post   Reply With Quote 
A very large majority of Chronic Lyme cases have negative blood tests for Lyme. This occurs for many possible reasons...the bacteria that causes Lyme is very highly adept at evading detection.

See http://www.anapsid.org/lyme/lymeseroneg.html for more info.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

Posts: 4166 | From WA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
Frank-incense
Member
Member # 42792

Icon 1 posted      Profile for Frank-incense     Send New Private Message       Edit/Delete Post   Reply With Quote 
Doing the antibiotic challenge sounds like the most reasonable course of action. Can anybody recommend a really good LLMD in southern california? as I don't really like my current doctor.
Posts: 10 | From California | Registered: Nov 2013  |  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 
Frank... Post here for info on doctors. Someone will help you!

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=forum;f=2;hardset=0;start_point=0;DaysPrune=1000

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

Posts: 95978 | From Texas | Registered: Feb 2001  |  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.