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Daughter's Igenex results back

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Posted 4/30/2017 9:00 PM (GMT 0)
Hi folks,
Hope you are having a good weekend. So, Igenex results back in, which conflict somewhat with LabCorp results. I'm glad we spent the extra money. Still waiting on GalaxyLab results for Bart....
Igenex:
Borreliosis:
IgM 39+
41 ++
58 +
According to their report, this makes her CDC positive
IgG 41 -+
no other positive bands
Negative - which is very strange bec LabCorp results showed positive on 3 bands.

So, I'm hoping this means she's in the earlier stage of infection (symptoms x13 months)?? And hopefully this means treatment more likely to be effective? I know all of you experts will be able to weigh in on this.

Co-Infections:
Babesiosis
IgM serum 40 = active
IgG serum negative

Ehrlichiosis
IgM serum negative
IgG serum negative

Bartonella
IgM serum 20 = negative
IgG serum 80 = indeterminate

Doc was absolutely positive she has Bart. We'll see when Galaxy comes back. These labs also conflict with LabCorp WB results.

At least we finally have the ultimate sensitive results. I can't wait to send this report to all of her HMO doctors (and one PPO doc) who dismissed her, and my request for WB testing. Of course, they'll probably say "IgM is often false-positive." But we have a clinical picture going back a year, including POTS symptoms!

Thank you in advance for any comments/suggestions. She's still having phlebotomy to reduce ferritin/reduce liver enzymes before she can start antibiotics. Going up on probiotics in the meantime.
Posted 4/30/2017 9:16 PM (GMT 0)
She has Lyme - but IgM doesn't mean she's in early stages. Lyme is different than other diseases - it can continue to show IgM antibodies...for many months to years.

13 months - isn't early really. It would be considered a chronic infection.

She also has Babesia and Bart.

Yes they will most likely say the IgM is a false positive for Lyme.

This is what Dr. Jemsek says:

"In virtually all infections, the IgM class of antibody (immunoglobulin) appears first and therefore represents a marker for an early infection. In most immune models, the IgM antibody gives way to the well-known IgG antibody class, usually regarded as the major enduring antibody response in chronic infectious diseases or other immune models. In almost all infection models, after just a few weeks, the IgM antibody level wanes to the point of being non-detectable and does not recur. However, a confounding fact in Bb infections is that the IgM antibody may persist for years, a very unusual situation in most disease states. Logically, one would have to conclude that this reflects an ongoing reactivation or persisting and continually renewing infectious state of Bb infection. Most active diagnostic laboratories involved with LD tend to agree with this notion. "

jemsekspecialty.com/laboratory-testing-for-lyme-disease/

The good news is you have validation and you don't need to question the clinical diagnosis. Does your daughter have a LLMD?
Posted 4/30/2017 9:28 PM (GMT 0)
Thanks Girlie - I think I had read this about IgM with Lyme (that it can persist for a long time). But does NOT having IgG positive results mean anything significant? No systemic infection? We don't have a LLMD, but a doc who is familiar in treating Lyme and has suggested a protocol that other folks on this forum said was appropriate. Doc tells us to expect 12 months for treatment. 13 months seems like a long time for us, but short compared to so many others!
Posted 4/30/2017 9:31 PM (GMT 0)
No, not having an IgG positive - doesn't take away from her IgM positive .

I had just 41 + on IgG and so did my husband.

I've seen that a lot.

If it's gone past just the bulls - eye rash and disseminated - then it's systemic.
Does she not have symptoms affecting different areas of her body? Does she have any neurolyme symptoms?

I think it's reasonable to expect at least 12 months.

You know what she has, and you have someone to treat her ...this is good. Breathe, mama.
Posted 4/30/2017 9:40 PM (GMT 0)
Yes, unfortunately, multiple systemic symptoms including some neurolyme symptoms. In Nov/Dec (9 months after first symptoms), she developed symptoms of POTS (tachycardia, vertigo)as well as occasional blurry vision. Then she developed a slight tremor in one hand. She had an MRI to rule out other potential causes of these symptoms.

She does have the +- for IgG 41....
Posted 4/30/2017 9:45 PM (GMT 0)
Good post Girlie.

Mom -
I was likely infected w/ Lyme & Co 20 yrs ago. I was never diagnosed until about 4 yrs ago with my first IGeneX, which was CDC IgM positive; my IgG was negative. So unfortunately, the IgM indication of new infection is yet another component of Lyme testing and diagnosis that just doesn't align nicely w/ what the medical industry knows and understands about immune functions.

A good LLMD understands the vast complexities with these tests and will diagnose and treat your daughter with or without positive test results. You won't need to have a labored discussion or process with him/her. If you encounter this, I'd leave - it's one of the few very black-and-white issues regarding Lyme & Co.

I've had periods when my liver enzymes shot up. Milk thistle seed tincture and burdock root tinctures reduced them in a matter of days... something else to try.

And it is SO GREAT that you intend to circle back to her prior MDs to share this info with them. I wish more people did that - it's one of the only ways the MDs will learn. Some of them, at least.

-p
Posted 4/30/2017 10:23 PM (GMT 0)

UCSDMom said...
Yes, unfortunately, multiple systemic symptoms including some neurolyme symptoms. In Nov/Dec (9 months after first symptoms), she developed symptoms of POTS (tachycardia, vertigo)as well as occasional blurry vision. Then she developed a slight tremor in one hand. She had an MRI to rule out other potential causes of these symptoms.

She does have the +- for IgG 41....

I meant not a positive IgG test result

That won't take away from her positive IgM result.
Posted 5/1/2017 12:30 AM (GMT 0)
Thanks Girlie and Piroutte. I'm really working hard to wrap my head around all of this. I guess I wanted to believe that not being IgG positive (other than band 41) might mean she was less systemically affected . Thanks Piroutte for the liver remedies - she's drinking milk thistle tea, but I'll definitely look into tincture. I wish we could start treatment earlier than mid-June, but it really doesn't make sense when her liver enzymes are so high, and before she finishes out her year at college (she's part-time because of being sick). As I think I said earlier, I'm suspecting she's going to having herxing issues, especially because she has at least one MTHFR mutation. I keep trying to tell myself that at least we're much further ahead than we were at the end of 2016...

P.S. Been trying to change my profile at the bottom to reflect new info, but it isn't letting me. I suspect it's my laptop, and not the website.
Posted 5/1/2017 12:38 AM (GMT 0)
There is a limit to how much you can type into your Signature line at the bottom.

Were you trying to add more? It looks like it maybe maxed out.

From now util mid-June - you can use the time to educate yourself, and your daughter can get her body ready - by starting detoxing...starting to eat healthy (if she isn't already)...etc.
Posted 5/1/2017 12:48 AM (GMT 0)

Girlie said...
There is a limit to how much you can type into your Signature line at the bottom.

Were you trying to add more? It looks like it maybe maxed out.

From now util mid-June - you can use the time to educate yourself, and your daughter can get her body ready - by starting detoxing...starting to eat healthy (if she isn't already)...etc.

I think I was maxing out the info...lol. Sigh...she's eating dorm food. Will write a new post to ask about best probiotic. Thanks again for responses turn
Posted 5/1/2017 1:02 AM (GMT 0)
Now your signature line is completely gone...
Posted 5/1/2017 1:40 PM (GMT 0)
Just to clarify, unfortunately, your daughter does have chronic Lyme. She has symptoms that are systemic. Early Lyme means either no symptoms or only a rash and something like swollen knees, not multiple body systems involved.

But, as Girlie said, "You know what she has, and you have someone to treat her ...this is good."
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