Confusing constellation of labs and symptoms - Lyme? Lupus? FSGS?

Hi All,

Wanted to capture a bit about my experience here. At this point I think it may be Lyme related, expecting comprehensive infection lab results in a week or so.

44yo man both HIV+ and HBV+ but well controlled and undetectable both for ~15 years. Born with one dud right kidney, with compensatory hypertrophy on the left.

From probably early middle school I had what seemed from the outside to be narcoleptic tendencies. No stimulation - just fall asleep, right into REM. It was confusing at first, because going into REM from waking can feel like hallucinating.

In my 20s when I was diagnosed with HIV, a rheumatologist also diagnosed me with anklysing spondylitis - though it wasn’t a slam dunk. RF was moderately over range, ANA positive, and symptoms. But the symptoms went away, and didn’t think of it again.

about 5-6yr who I decided to get health under better control and started studying and applying neurotherapy - eeg biofeedback and neurostimulation. I think it’s a game changer - have invested probably over $100K in study, learning, certifications, and equipment. Basically re-training the brain to overcome many complaints - including brain fog. Problem is, it never really stuck. Somebody suggested that it could be metabolic - if the body doesn’t have the resources, it will be hard to train.

about the same time, my good kidney function began declining. High creatinine (2.99 or so) proteinuria (sometimes nephrotic range) and my nephrologist suggested Lupus. ANA positive, C3 a little low but not a lot, anti DsDNA positive. But a specialist took one look and practically laughed at my Dr thinking it was Lupus my nephrologist declared it primary FSGS, no apparent reason.

about the same time, I developed this terrible OCD like behavior of persistent earworms. I’ve become scared of hearing a pop song - I try and avoid it, it really stresses me out to hear catchy things. It’s stressful. I can be fine one minute and then suddenly it strikes. It doesn’t feel driven by “thought.” I control my environment by almost always having one earphone in, to play music that I “approve” - generally calm spa type music.

I met with an integrative medicine specialist, he looked at my methylation report and explained all the the bottlenecks in COMT? and DAO, that this could totally cause inflammation and imbalance in the brain. He noted that my homocysteine was super high (99) and very low vitamin d (20) and suggested follow up for biotoxins.

So: HIV, some history of autoimmune issues, and most chief complaint - neuro issues like brain fog and OCD.

Failed VCS, evidence of some mycotoxins in GPL and RT labs - but no evidence in home of Emma/Ermi. 4-5 weeks ago a Nurse suggested a lightweight commercial detox to start (cell core) and OMG I felt terrible. Anxiety, increase in OCD and earworms, lots of phlegm, horrible eczema all over body. None of these are really new, just increased to the max still right now.

Latest set of labs doesn’t seem like a slam dunk but:

ADH 4.1 (ok)
Osmolality 298 (high end of ok)
TGF-b1 8,400 (high)
C3a (labcorp) 210 (just over high end)
C4a (labcorp) 282 (within labcorp range)
ACTH plasma 36 (seems ok)
VEGF 96 (seems ok)
Leptin 1.2 (ok)
MMP-9 629 (high)
MSH 34 (just below the Shoemaker range)

Waiting on a long list of infection labs including a Lyme immunoblot, but something seems really aligned here. First, the subjective reports people make of their personality being chipped away, drive, will, the neuro stuff. Then the mysterious autoimmune markers. The low vitamin D. Something wonky with C3a. The TGF and MMP.

Oh yeah - grew up in VA with lots of outdoors activity, Boy Scouts, and etc.

While I never would have thought of Lyme, it actually seems like it might be the simplest and most elegant explanation of all of these things - even the kidney decline. In my studies it appears that elevated TGF may be what’s actually responsible in lupus nephritis and forms of FSGS.

I wish the labs were more definitive at this point - one issue is that the complement labs are from labcorp not Natl Jewish, but it sounds like there is some emerging disagreement about the usefulness of those labs in biotoxin illness.

Anyway! That was long, just wanted to share. I’ve felt a bit typecast even by very highly recommended drs - one immediately zoomed into my HIV status and asked if I was on dialysis (?? I’m pretty far from that, like most with one kidney!) suggesting that those can make somebody feel pretty sick. But while I’m sure those are variables, I think there is very much something else going on here.

The bottom of my left foot! Like all the time if I’m not distracted. Really gets itchy especially. I’m curious why you ask about that?

dca13,

Hello and welcome! I have CIRS from mold and am familiar with the Shoemaker labs and the ERMI tests. Here’s a link to the Shoemaker lab ranges in case you don’t already have it. https://www.survivingmold.com/resources-for-patients/diagnosis/lab-tests.

My C3a and C4a tests didn’t go through National Jewish either. They were done by Labcorp. I found TGFB1 to be the best indicator of mold exposure in my case. When first tested while in my parents’ house, it was around 27,000. Three months after moving in with a relative’s house that had less mold and starting fish oil and glutathione, it dropped to 1,491. It has fluctuated over the years as mold exposure has changed.

I have done quite a few ERMI tests and would be glad to offer my observations on it if you want to post the results here.

Have you ever had a bullseye rash, unexplained stretch marks, or unexplained scratches or red or purple streaks on your skin? Have you ever had cat scratches or cat bites?

bluelyme said...
most of the information gained on bartonella was gained by studying the wasting syndrome associated with hiv . hearing that covid contains genetic markets of hiv virus is slightly disturbing but i digress. one good kidney and a used to be deadly virus is enough to let bartonella have its hayday in your system . you will definitely have to support your remaining organs if you should choose to try to pursuit treatment. any treatment you do against bartonella will have an effect on borrelia and mostly vice versa with some exceptions, bartonella has 2 cell walls and long replication time so its not easy to get immune sx on top of it especially when yours may already he suppressed. your high vegf is indicative that you may be infected .
fwiw bee venom is known to decimate hiv virus it come in contact with , also my creatine in down with better blood flow

Thanks, this is really interesting! Looks like the infection labs are complete - just asked the dr. office to forward me the results so I don't have to wait 48 hrs for Labcorp to release them.

You have a good point. I have a lot going on in my system! Even with the HIV (and HBV) controlled, I understand healthy HIV patients tend to have a higher than normal level of systemic inflammation. All of these things seem to be adding to the inflammation bucket and now causing a noticeable problem.

I didn't know VEGF was correlated with bartonella. Just found some fascinating links on this. Thanks!

I am thankful for the doxepin I've been taking for a couple days now. It has significantly reduced the flare up, am surprised it isn't making me drowsy - but perhaps that's the effect of the prednisone. I'm open to use these things to get over this flare, but have got to get to the bottom of this and solve it.

Bartonella is really hard to find in the blood.

You would need a specialty lab like IGeneX to test for Bartonella and even they admit that they don't always find it. They have a very advanced process for it.

Labcorp is kind of expected to not pick up on it. Same goes for Lyme. Lyme disease hides deep in tissue and isn't always in the blood.

glutithione could spark some toxin mobilizing and maybe gum up some sulferation depending on your genetics but not likely for that long. i did have to titre up to pushing iv of 2000mg in a sitting.

your new doc sounds pragmatic and thats a good start

@rainyC
with simple giemsa staining bartonella is Easy to see in the blood , with regular brightfield microscope at 1200x : just takes longer than 10 min alotted by lab tech at lab corp or quest to search a whole smear sample . its like 1st year pathology even vets can do it for cattle n cats . see microscope thread on lymenet for pics and details ...
i actually had a demonstration setup for my llmd's office couple years back with a confirmed bartonella volunteer and he then bought the best nikon scope and stains money could buy so he didn't have to rely on faulty testing ...

Post Edited (bluelyme) : 6/20/2022 11:01:31 PM (GMT-6)

bluelyme said...
glutithione could spark some toxin mobilizing and maybe gum up some sulferation depending on your genetics but not likely for that long. i did have to titre up to pushing iv of 2000mg in a sitting.

your new doc sounds pragmatic and thats a good start

Thanks! Yeah, I suspect there has been more going on in my case. I left out that I am HIV+ - well controlled for almost 20 years, never been "sick" - but on the CIRS labs my Abs. CD4 has dropped from over 900+ in April to 325 in May - which is a huge crash! Down in that territory it's easier to just get sick, or for latent infections to surge. I haven't seen values that low since I first began treatment - before I was on ART drugs. Since the toxins can be immunosuppressive, I wonder if the mobilized toxins REALLY gummed me up.

I have read that in developing countries, mycotoxins are a real problem for HIV treatment. They don't interfere with the drugs, they just generally suppress the immune system and make it difficult to take full advantage of the drugs.

At first I told the dr no, no memory of ticks and never even considered it.

Still no memory of a tick bite, but I’ve recently learned that my mom has had at least one and had it removed by a doctor, childhood friends did, and a friend of my mom’s in the neighborhood got quite sick many years after a tick bite.

So it’s definitely “in the neighborhood.” Does this change the diagnostic decision or approach at all?

With a few bands on Labcorp IB, the doctor is concerned and wants to run an IGeneX, but I have to wait six weeks due to a course of prednisone I had to take due to an inflammatory/mast cell flare. So that puts this out over two months to find out more.. Wondering if it would be appropriate with some bands (39 and 41) and family/friend history of tick bites and Lyme to ask them to just get started…

Girlie said...
“ bands (39 and 41) “

Those were positive on your labcorp test?

Band 39 is specific to Lyme.
And 41 is the flagella of a spirochete.

That’s all you need to back up your history etc. for a Lyme diagnosis

Thanks! Yeah, I've absolutely devoured everything I can find about the testing and those two bands make sense. My Dr. agreed.

It sounds like the prevalence of ticks where I grew up is enough of a history. I didn't know I knew people from childhood who have literally had ticks and even Lyme! I have another app with the Dr. on Tuesday, it would be nice if we could start taking action rather than wait 6 weeks and then another 2 weeks to get the IGenX test done. This Dr. has all kinds of tech in his office - like IV ozone treatment - and includes a comprehensive set of neuro-rehab activities to help the brain and nervous system fully recover after exposure to these kinds of things.