Labs Interpretation

Rosie in the Mountains said...
Hello. I'm new to these boards, but not to the Lyme community. I believe I contracted Lyme 15+ years ago. I didn't realize it at the time, but in hindsight, I remember having a bullseye rash. At the time, it was diagnosed as ringworm (from school gym mats), and I didn't think much about it.

7 years ago I wasn't feeling well, and this is when it first crossed my mind that I might have Lyme. All the symptoms were there, and have been for some time. I went to 2 LLMDs - one gave me a positive clinical diagnosis based on 2 Igenex IgG bands (31,41) and my laundry list of symptoms.

I wanted a second opinion, and went to another LLMD who I though was very well regarded in the state. She tested me with MDL labs, and said I was negative, that there was NO way I had Lyme. She called me to provide my results, and I never actually saw the labs myself (something I deeply regret, but I blindly trusteed her because she was a prominent figure in the Lyme space). I didn't do any treatment, and worked with a functional med doc on mitochondrial health. I started to feel a bit better, but many of my symptoms didn't go away.

Fast forward to last year, feeling really awful again. I went to a functional med doc, and there were definitely some issues with my bloodwork. We focus on my hormones/thyroid, supplements, and my diet. I start to feel a little better, then have another major flare. My neuro symptoms were really affecting me, and I was having joint and body pains. My gut told me to test for Lyme again.

The functional med doc suggests we do CD57, Lyme, Line Blot Serum, and some viruses like EBV (through Lab Corp). The results show I'm very low on CD57 (44) and I pop on IgG 41 again. My IgG EVB nuclear antigen is also very high. He provides another clinical diagnosis of Lyme, based on CD57, IgG band 41, symptoms, and what I told him about my prior experience.

I start to wonder why I never saw my results from the 2nd LLMD 7 years ago, so I request them. They seem reluctant to go find them, but I push for it since they are technically supposed to keep those results for 7 years (April will be 7 years). They send me the first page that says I'm negative, but I notice a note about band 41, and to reference the next page. I message them again, and ask if they can send that page too.

They send it to me, and it's the results for Borrellia B31 + OspA/B IgG ViraStripe IgG through MDL labs:

Bands kD: Intensity, % of cut off
93: 50%
66: 46%
41: 209%
39: 37%
30: 53%

There is a note that says: Bands presented must have an intensity greater or equal to 60% of the cut-off control band.

One or two bands from: 23, 31, 34, 39, 93 kD are considered equivocal as the "alternate criteria"....3 is considered "alternate positive" - so not CDC positive, but I guess it's positive for that lab.

So my question - is it signifiant that some of these bands were pretty close to 60%? Since I've potentially had this for many, many years, I understand it can be hard to have is show on a test - especially unprovoked.

I was just really surprised when I saw the test, because she brushed it off like it was absolutely nothing. And when I looked, it didn't seem like nothing.

If you read this far, thank you. I would love to hear your thoughts. I'm looking for a new LLMD, but in the meantime, I can't get this off my mind.

Post Edited (WalkingbyFaith) : 3/21/2023 5:37:40 AM (GMT-8)

Rosie in the Mountains said...

On Thursday I'm getting a blood smear (Giemsa blood stain imaging) which will hopefully give some insight in regard to co-infections. I think I found a LLMD, but still doing my research. If that doc doesn't work out, I'll definitely leverage this group. It's a wonderful resource.

WalkingbyFaith said...
Hi, Rosie!

I just wanted to add that even though you likely have and are suffering from Lyme, that very likely other things are involved, too. Lyme rarely comes alone and is most often accompanied by coinfections like ehrlichia/anaplasma, bartonella, babesia, RMSF, etc.

Additionally, many with Lyme seem to become adversely affected by exposure to mold when living or working in water damaged buildings. Mold and water damage are often not noticed unless the building was flooded. Unfortunately, toxic mold often remains hidden behind showers, in HVAC units and duct systems, inside wall cavities around windows and doors and plumbing lines, in basements, under or behind kitchen cabinets, etc.

Mold exposure can cause symptoms that overlap significantly with those of Lyme and coinfections. The exposure to toxins suppresses the immune system and can lower CD-57 (it did mine) and deplete glutathione. The toxic exposure can cause the infections to get the upper hand. When people are stable and doing well or have recovered and then relapse, mold exposure should be strongly considered and investigated.

Just wanted you to be aware of those things in case the doctor hasn’t mentioned them.

I also was only positive on Band 41 and had an indeterminate on Band 39 with Igenex. I was living in a moldy environment. After learning about Lyme, bartonella, and babesia, I realized I likely had one or more of the infections since childhood based on symptoms. My immune system kept things in check for the most part. I believe long term mold exposure and a flu vaccine flipped the proverbial switch that allowed the infections to overthrow my immune system.

I said all that to say this. I often wonder when others have symptoms but only Band 41 if they likely have mold exposure, and if so, is the mold the primary driver of their symptoms. In other words, if it were not for mold, would they be suffering from the symptoms of Lyme/co or would the infections be dormant? I have nothing to prove that. It’s just a thought in the back of my mind.