BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
your results are so similar to mine except I had a few more bands
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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IgG - Igenex Positive; CDC/NYS Negative with 31+; 41++ -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While this, combined with your bite history, rash from that (even if not the typical bulls eye) - and symptoms after the bite - glaringly points to disseminated lyme, you need to know that would NOT be the opinion of most doctors, especially Infectious Disease (ID) doctors who follow the IDSA guidelines.
I think you already understand the rift between the IDSA and ILADS and the refusal of the IDSA to learn more about disseminated and chronic lyme, but just in case not -- or if you are tempted to go to an ID doctor and expect treatment (which would be denied) - see the details below.
The IDSA - even with CDC positive for IgM --- does not accept that as active chronic lyme. They don't accept that there is even such a thing as chronic lyme. To them, it's a short-lived infection. They are wrong.
They would say it's past exposure, not current disseminated infection. They'd want the IgG to be positive for current infection and they'd probably still want a spinal tap to confirm.
Spinal tap is NOT a good test for lyme. It has very poor outcomes. It is expensive, can be painful and puts big insurance money in the hands of doctors for a test worthless regarding lyme. They are often used to deny treatment.
Even if you had a IgG positive AND a rare positive spinal tap, the IDSA treatment guidelines do not allow for adequate treatment.
I mention all this, just to save you shock, horror and disappointment that many others have gone through. You can't go back to all the ignorant doctors who dismissed you and wave this in their face. They would still agree with the IDSA take on this.
However, if you have a good relationship with your PCP, you might take your tests results with the details below - to share in the spirit of learning. Your PCP may never have seen all this before and might appreciate the added information but your PCP may still have his or her hands tied regarding what they can do for you.
I'm pretty sure you have a LLMD who is ILADS-educated, so be sure to stick with him or her.
----------------
Dr C's Western Blot explanation is discussed here:
"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.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." -------------
That piece is not from ILADS' site, directly, (as the LLMD who wrote this treats lyme patients and we try to protect his identity to whatever limited degree we can here). Still, more can be learned here:
ILADS - International Lyme and Associated Diseases Society -
[ 08-10-2010, 02:52 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You also need to be assessed for other tick-borne infections. Lyme rarely travels alone. I hope your LLMD has clinically assessed you already - and suggested tests if deemed necessary. Testing for other infections is also not 100% so clinical manifestations are important for the LLMD to consider.
Some LLMDs like to treat lyme first. Some treat coinfections first, or alongside of lyme. Each patient's mix and needs vary.
I know you know that Igenex also does the full range of tick-borne infections tests but, adding this for others who may not be aware of this:
IGENEX - testing for full range of tick-borne infections
======================
A stealth infection is one that can evade the immune system, sneaky in many different ways, normally not detectible with simple tests, and presents with a myriad of confusing symptoms that can wax & wane - or fluctuate and may not be exactly the same for all patients or even the same all the time for the same patient.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
==========================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, it's not about proper, it was just my wake-up brain exercise and thought it would be easier in future posts so that those answering know the score, so to speak.
You might add date of bite and date of test on there. And date treatment began. Treatment can be shortened to Tx.
These notes help by providing some point of reference regarding how quickly someone was able to begin treatment. Most could simply say: usual tx delays - or searching tx options, etc.
If you have a LLMD, that would be helpful to know, too. You say so in your first post above, however, in future posts you may not. If it's in your signature, those replying will not have to ask that (since so many can't get to a LLMD).
Hey, good luck. It's a lot of work to figure all this out - a new life style but things you learn now will serve you for a lifetime. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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quote:Originally posted by sixgoofykids: Tutu, just click on the link.
I did, but it wanted a password or something... anyway, it's working now.
TN... You have Lyme! Good news, bad news! Hope you have or can find a good LLMD near you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Wow Kim. You were REALLY positive. I hate it that that is a good thing but it does help family members and friends be a little more sympathetic to you plight.
Who knew that having a positive test for a horrible disease could get us all excited.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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