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 » If not Lyme, then what? So confused..help

 - UBBFriend: Email this page to someone!    
Author Topic: If not Lyme, then what? So confused..help
jennyfromtheblock
Member
Member # 43805

Icon 1 posted      Profile for jennyfromtheblock     Send New Private Message       Edit/Delete Post   Reply With Quote 
I know labs even igenex can be faulty.

Dr is now questioning if it is lyme b/c the isotope came back fine.

The was another lab that was also fine, that is usually low with lyme. This plus a neg igg wb, with a positive igm wb made him want to investigate further. Before pumping me with the big guns....

Nurse called and reported, and said maybe we should try a trial off the meds. I said, but I am getting better on the meds!!!!! She did say, then we need to discuss further, b/c that was a good sign. And it still could be lyme. That sometimes you need to treat empiricly (which I believe) But the mention of stopping and that maybe its something else scares me.

I am so scared that they will stop and start treating me like all those other drs. I was slowly starting to get better. In jan, on a scale of 1-10, I was a -2 and getting worse. Now I can say I'm a 2.5. THis is huge.

I have so many symptoms at least 52 plus that can be explained by lyme...If not lyme then what???

He did say that the other possible viruses I tested neg for. And I believe that if it was a virus I would not get better on antibiotics.

I am so traumatized by my past experiences with dr.s. I can't lump him into that bunch yet, b/c he is the first one to treat me, and I am getting better instead of worse.

--------------------
celiac dx 2012
pancreatic neuroendocrine tumor dx 2012
lyme dx 2/14
poss igm wb, neg igg wb - Igenex/CDC

Posts: 85 | From south shore | Registered: May 2014  |  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 
What?! A positive western blot isn't enough?

A truely lyme lterate doc will treat REGARDLESS of sero status.

The fact you had a potitive western blot should be MORE than enough for continued treatment.

Coupled with the fact YOU ARE IMPROVING is like a home run!

Is your doc treating you for coinfections also?

Treating coinnfections are a necessary evil.

Is the doctor you are seeing onme that was recommended to you off lymenet, or a local support group recommendation?

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
If he wont treat you need another doc
Are you in plymouth mass? If so good docs are not far away

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
jennyfromtheblock
Member
Member # 43805

Icon 1 posted      Profile for jennyfromtheblock     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am going to know more on weds. I see the PA then.

I had coinfections tests I believe from igenex and they were neg.

As far as wb goes, I have cvid and my igg subclasses are low, so...no igg antibodies, no positive igg wb. They tested the isotope to see if it was specific to the igm...

I think that the discussion on weds will be about treating empiricly. I am hoping. Otherwise I'm out.

I couldn't imagine it being anything else, when I have symptoms that are SOOOOO specific to lyme.

I am at the point where I want them to ramp up the meds bc I am starting to see improvements finally. Not pull back.

I have my files ready to ship off to the cape. But we will see what happens.

I like my drs aggressive plan, but if he holds back b/c of the labs....I have to move on.

For years I have had drs make me second guess myself. I hate that I am doing that again.

The dr. I am seeing I found on my own through searching for a dr who deals with ME/CFS patients. That was the diagnosis they gave me in boston. This dr. said, you don't have CFS. He started treatment for probably lyme.

Yes I am in MA

--------------------
celiac dx 2012
pancreatic neuroendocrine tumor dx 2012
lyme dx 2/14
poss igm wb, neg igg wb - Igenex/CDC

Posts: 85 | From south shore | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here's a thread with a list of coinfections to test for.

One of the links it to Stanford's CFS department. I took the form to my doc and had him check everything on it.

I have 13 coinfections.

Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/127210?#000000

By the way, if the doc is a Lyme specialist, positive IgM would not require further investigation. IgG and IgM work differently than other infections. IgM can mean old infection.

You don't need both IgM and IgG to be positive. One or the other means Lyme.

My friend got into a mess when a doc thought they both had to be positive. She didn't treat her Lyme for 4 years.

You sound like you've done great research. Keep pursuing Lyme. A lot of Lyme docs treat with antibiotics until you are feeling well and a few month beyond. They don't back off.

Posts: 2839 | From California | Registered: Jul 2012  |  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 
If the Dr does not believe a positive IgM then you need a real LLMD.

-

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both.
Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa." --- Dr C of MO

This is quoted from the following link:

Western Blot Explanation
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

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

Posts: 95655 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
Jenny - what were the results of your Igenex WB IGM test? Which bands? How many?

Regardless, if the IGM test was positive that most likely means Lyme.

I also have CVID - low IGG/IGA total and subclasses..

FWIW I tested with Igenex four times. Results are in my sig. line. Individually - each test was negative. Cumulatively - I had the bands for a positive result.

I also was negative on the isotopes for bands 30 and 31.

I ultimately tested positive on the Advanced Lab culture test. I hope the results of that test are accurate - the CDC has doubts.

My total IGG is in the 500's when not on IVIG/SCIG. Somehow I managed to show a few IGG bands anyway with Igenex.

Curious - are you on IVIG? Were you on IVIG when you tested?

As an aside:
I started IVIG a few years ago. One doctor I see still sends my blood to Labcorp for WB testing.

I know that IVIG has Borrelia Burg. IGG antibodies in it - yet the LC test is apparently so bad it does not even pick up on the Bb antibodies that I know are in my blood from infusions.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
jennyfromtheblock
Member
Member # 43805

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

I was tested twice for CVID. Once they told me (diff place) that I was fine. But they messed up the vaccination testing. The lab never recorded the initial results. So nothing to base it off of. She ignored that my sublasses were low.

New doc said off the bat...these are low. Retested, still low. Plus I have a history of bacterial infections of the skin(had MRSA twice in 6mos)

Dr wants me on subq injections 1 hr long once a week. So, not IVIG, but SubQIG. Insurance said no way...she's fine. We appealed. They upheld the decision.

Now I get gamma shots once a week..better than nothing I guess.

IGENEX tests

IFA burgdorferi G/M/A 40(equivocal)

WB IGM positive for igenex and cdc
23-25 IND
31 (just a line)
34 Ind
39 +
41 +
58 +

WB IGG Negative
41 +

duncani,microti, babesia fish, erlichia, phagocytophilium, henselae, bartonella
all negative

--------------------
celiac dx 2012
pancreatic neuroendocrine tumor dx 2012
lyme dx 2/14
poss igm wb, neg igg wb - Igenex/CDC

Posts: 85 | From south shore | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh for crying out loud you have lyme and need a real llmd

Your best chance of having a normal life is to hit it hard now

If your ref was to dr d there are issues therr too

You really should get to ny-its not that far when you think about your life

**edited name of LLMD's city**

[ 06-09-2014, 05:53 PM: Message edited by: Lymetoo ]

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
jennyfromtheblock
Member
Member # 43805

Icon 1 posted      Profile for jennyfromtheblock     Send New Private Message       Edit/Delete Post   Reply With Quote 
thank you for that reality slap lpkayak...I needed that.

Yes, I have been learning about the issues with Dr.D....I have heard glowing testimonies as well.

I did say last week I would go to NY..someone had advised on pm a few weeks ago. This would be Dr.H?

I already traveled to NY to see a Dr. for CFS. I waited almost 6 hrs in the waiting rm.

--------------------
celiac dx 2012
pancreatic neuroendocrine tumor dx 2012
lyme dx 2/14
poss igm wb, neg igg wb - Igenex/CDC

Posts: 85 | From south shore | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
susank
Frequent Contributor (1K+ posts)
Member # 22150

Icon 1 posted      Profile for susank     Send New Private Message       Edit/Delete Post   Reply With Quote 
Jenny - do you know your total IGG levels?

FWIW I had a recent change in insurance.

We are in the process of trying to get Gamma approval for me with the new insurance company.
IVIG and/or SCIG.

When I was first Dx'd a few years ago we did a Pneumo titer test. My levels low and non-protective. But we did not do the vaccine challenge. My insurance company at the time did not require it.

Now I fear the new company will require it - which means being off Gamma replacement - for - I think three months. Then test when all donated
antibodies out of my system.

When did you start the Gamma injections?
How many cc's do you get? Do you notice any improvement on them? I assume you get Gamastan?

I hope you can get in to see a good LLD soon.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

Posts: 1613 | From Texas | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
jennyfromtheblock
Member
Member # 43805

Icon 1 posted      Profile for jennyfromtheblock     Send New Private Message       Edit/Delete Post   Reply With Quote 
susan

I don't recall what the total igg was. I think the issue was in the subclasses.

My insurance is great if you are healthy. They keep sending my husband money for being healthy.
I told him, don't tell them youre married to me!

I am not sure how much gamma I get. I know that the rate I pay is $80 a shot, once a week. I started a few weeks ago. This will be my fourth I think. I don't know if I notice a difference, people keep asking me.

I started flagyl a few weeks before and I have been doing well since then, so idk. Not sure what I'm supposed to feel with it.

--------------------
celiac dx 2012
pancreatic neuroendocrine tumor dx 2012
lyme dx 2/14
poss igm wb, neg igg wb - Igenex/CDC

Posts: 85 | From south shore | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
Eight Legs Bad
LymeNet Contributor
Member # 13680

Icon 1 posted      Profile for Eight Legs Bad   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
SusanK wrote:

"I ultimately tested positive on the Advanced Lab culture test. I hope the results of that test are accurate - the CDC has doubts. "

You can rest assured that that test, developed by Drs Alan MacDonald and Eva Sapi, is accurate. I wouldn't worry about the CDC's "doubts". The CDC will tell you that chronic Lyme does not exist, that their existing two-tier protocol is accurate, and that Lyme is easily cured in a simple short course of antibiotics. And that Father Christmas comes down the chimney each year.

Elena

--------------------
Justice will be ours.

Posts: 786 | From UK | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
jennyfromtheblock
Member
Member # 43805

Icon 1 posted      Profile for jennyfromtheblock     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm hoping Father Christmas brings me a hickman catheter this year and fills my stocking with rocephin.

Waiting on insurance who just denied someone b/c they didnt have a possitive Elisa

--------------------
celiac dx 2012
pancreatic neuroendocrine tumor dx 2012
lyme dx 2/14
poss igm wb, neg igg wb - Igenex/CDC

Posts: 85 | From south shore | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

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

My suggestion would be get a brain SPECT scan - if that is abnormal then it will help you get IV antibiotics. It may still take an appeal to the insurance company, but it can be done even with a negative Western Blot.

Note - I would get the brain SPECT scan done at Columbia Presbyterian in New York City - don't really trust most other places to know how to read it.
Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  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 
I don't know how they expect you to have a positive IgG if your IgG is low/you have CVID...

Sorry, just stating the obvious...

Agree w/ others above - sounds like you need a real LLMD...

--------------------
-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
   

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.