low CD57 - negative lyme

Hi all,
Had my follow up appointment with functional medicine LLMD last week. Tested negative for lyme and co-infections on all bloodwork (Quest and Igenex spot).

Based on my results, he's putting me on a treatment plan for MCAS and mold toxicity, not lyme. I'm still waiting on results from Great Plains mycotoxin test, but he felt comfortable putting me on mold treatment anyway.

Looking over my results again and I just wonder if I should believe the negative lyme tests. I've done some reading and seen that low CD57 can often indicate lyme even with other negative tests. My CD57 results are all super low:

CD57+/CD3- OF % LYMPHS: 1 (ref: 1-10 %)
CD57+/CD3- OF % WBC: <1 L (ref: 1-4 %)
CD57+/CD3- ABSOLUTE: <20 L (ref: 20-258 cells/uL)
CD57+/CD3-/CD8- OF %LYMPHS: 1 (ref: 1-5 %)
CD57+/CD3-/CD8- OF % WBC. <1 L (ref: 1-3 %)
CD57+/CD3-/CD8- ABSOLUTE <20 L (ref: 20-114 cells/uL)
CD57+/CD8- OF % LYMPHS 1 (ref: 1-15 %)
CD57+/CD8- OF % WBC <1 L (ref: 1-4 %)
CD57+/CD8- ABSOLUTE <20 L (ref: 20-248 cells/uL)

Should I be pushing for lyme treatment? I also came up with a bunch of vitamin deficiencies (particularly low B vitamins), as well as low total T3.

The protocol he put me on for MCAS and mold toxicity includes GI detox plus, quercetin 500mg, vitamin D3, CoQ10, natural thyroid medication, and weekly IV nutrients which I start this weekend. He also recommended regular sauna for detoxing. I've been on a super strict paleo diet since the beginning of the year, which he said is working because I have no candida issues. I'm also taking claritin and pepcid daily for allergies, which he said to continue. I'm also on bio-identical estrogen and progesterone because my period has been MIA since last summer (truly, my body hates me).

My symptoms are only getting worse, not better. Been dealing with vertigo since the beginning of January, which seemed to improve for a while but has been flaring up again the past few days. It feels like my body is constantly in motion, and I have internal vibrations that feel like tiny earthquakes (not fun when you live in SoCal and have to worry about real ones). My eyelids and under eyes are crazy red, swollen, and dry. My arms feel numb occasionally, and overall my body is so weak.

I really like and trust this doctor but after 8 months of illness without answers, I've obviously grown skeptical. I felt certain it was lyme, and don't want to get sidetracked with other treatment if it won't help me. On the other hand, I'm so desperate for even a tiny bit of improvement that I really hope his plan works.

Can you describe what you mean by little earthquakes? Does it feel like vibrations like there’s a cellphone on vibrate under your skin? Any burning in your hands or feet?

I got vertigo and dizziness for 3y before developing small fiber neuropathy. This sounds like a possibility for you

Band 34 on Western Blot is specific to lyme.

That result plus history/symptoms of Lyme disease is enough for a LLMD to diagnose - and do a trial of meds to see how you react.
(Or herbs )

What were the IND bands on the WB?

As someone with long term Lyme and mold, here’s my honest opinion.

“Based on my results, he's putting me on a treatment plan for MCAS and mold toxicity, not lyme.”
- What results led him to treat MCAS and mold toxicity? I’m guessing there was something in your other test results combined with symptoms and history that warranted this.

“Should I be pushing for lyme treatment?”
- No. Not yet.

Your symptoms sound very moldy to me and much like mine when I was in my moldy house.

“I really like and trust this doctor but after 8 months of illness without answers, I've obviously grown skeptical.”
- 8 months of illness without answers. Have you been under this doctor’s treatment for 8 months and the doctor has no answers as to what is causing your illness?

“I felt certain it was lyme, and don't want to get sidetracked with other treatment if it won't help me.“
- It’s Lyme, too, if you were positive on band 34, but Lyme may be a secondary factor at this point.

“ My symptoms are only getting worse, not better.”
- I have been there and understand the frustration and desperation. If mold is involved (and it sounds like it is), this is not surprising.

From everything you said, it sounds like your doctor is thorough and is doing all the right things. Recovering from chronic Lyme often involves much more than killing borrelia (or counfections). Your doctor is treating bodily dysfunction to help right-side your body and enable it to recover.

Have you done an ERMI test on your home and workplace? If the mycotoxin test comes back positive, you will have to identify where you are being exposed and remove yourself from exposure.

Which CD57 test did you do? I've never seen one that specific.

The doctor that ran the first Igenex test for me was an LLMD. Paid $1500 for him between two appointments, and he told me I was negative for lyme. I only saw the full results because I asked him to send them to me - otherwise I wouldn't have known about the IND bands. I have shown these results to a couple other doctors (one more LLMD, a couple integrative MDs) and everyone has said it's murky.

Update. My Great Plains Mycotoxin report came back. I have two mycotoxins that are high:
Ochratoxin A - 12.87 (Normal range <7.5)
Chaetoglobosin A - 69.68 (Normal range <10)

So I'm obviously off the charts for chaetoglobosin. Could this be the source of all my issues? Where do I go from here?

Here’s what Dr J (Jemsek clinic) says about the testing


“The biggest problem is a lack of standardised testing, and the tests we
do use can be problematic, especially if they are performed either too early or too late into the illness. Too early into he illness antibodies aren't
being created yet, while too late into the illness the immune system is no
longer making antibodies. ELISA is not a true screening test because it's
not proficient or sensitive enough to detect Borrelia burgdorferi. We use
the Western blot testing method at the Jemsek Clinic because it looks for
more unique and specific antigens.

Q. Can you explain a little more about what the ELISA and Western blot are screening for?
A. Both tests indirectly detect infection by detecting antibodies in the
blood serum. The presence of an antibody doesn't always mean an active
infection is present, but it does indicate exposure to the infectious agent.
The absence of antibodies doesn't necessarily mean that there is no active
infection.
Our bodies make antibodies in response to foreign attackers like infection.
The first antibody created is usually immunoglobulin type M or IgM. It
takes about four weeks to make IgM in quantities large enough to be
measured. The antibodies typically stay in circulation for about six months
and then the detectable levels decline. If the infection persists and the
IgM levels remain detectable, the Lyme patient is chronically ill.
The second, more potent antibody is the IgG, which is made after IgM. IgG
takes four to eight weeks to form, and peaks at about six weeks. Because
the two antibodies are different, there are two separate tests to detect
their presence. When testing patients, physicians should specifically order
either the IgM or IgG ELISA or Western blot.”