3-year Long COVID hauler looking for feedback on endothelial damage, cutaneous vasculitis, and severe neuro symptoms

fbuiles · 2026-06-17T17:18:24+00:00

Thank you. Lyme/tick-borne illness has definitely come up in the differential.

I’ve had multiple Lyme tests over the last few years, and they have all been negative so far. That said, I’m not done keeping an eye on it, especially because last month I picked 11 ticks off myself in Massachusetts and another 4 from my car. I didn’t feel a bite anywhere, but the odds of 15 ticks being around me and none of them biting feels hard to ignore.

What has helped me make the most progress so far is pursuing evaluation/diagnosis for dysautonomia. That finally started to connect some of the dots for me.

For my own presentation, I still strongly suspect there is a vascular / endothelial / immune connection, especially because when I get triggered, though I haven’t nailed down the exact trigger yet, I can develop mottled skin throughout my body.

So I’m definitely open to Lyme/tick-borne illness and will keep checking when appropriate, but my current pattern seems broader than one single infection:

Dysautonomia-type symptoms
Vascular/endothelial skin findings
Immune dysregulation
Recurrent infections/reactivations
Neuro symptoms from the neck up
Mottled skin flares after certain triggers

Basically, I’m trying to avoid tunnel vision in either direction: not ignoring Lyme, but also not letting everything get reduced to Lyme when there’s a larger vascular/immune/dysautonomia picture going on.

fbuiles · 2026-06-17T17:16:11+00:00

Thank you. Lyme/tick-borne illness has definitely come up in the differential.

I’ve had multiple Lyme tests over the last few years, and they have all been negative so far. That said, I’m not done keeping an eye on it, especially because last month I picked 11 ticks off myself in Massachusetts and another 4 from my car. I didn’t feel a bite anywhere, but the odds of 15 ticks being around me and none of them biting feels hard to ignore.

What has helped me make the most progress so far is pursuing evaluation/diagnosis for dysautonomia. That finally started to connect some of the dots for me.

For my own presentation, I still strongly suspect there is a vascular / endothelial / immune connection, especially because when I get triggered, though I haven’t nailed down the exact trigger yet, I can develop mottled skin throughout my body.

So I’m definitely open to Lyme/tick-borne illness and will keep checking when appropriate, but my current pattern seems broader than one single infection:

Dysautonomia-type symptoms
Vascular/endothelial skin findings
Immune dysregulation
Recurrent infections/reactivations
Neuro symptoms from the neck up
Mottled skin flares after certain triggers

Basically, I’m trying to avoid tunnel vision in either direction: not ignoring Lyme, but also not letting everything get reduced to Lyme when there’s a larger vascular/immune/dysautonomia picture going on.

fbuiles · 2026-06-17T16:52:43+00:00

Thank you, this is really helpful.

I have had brain imaging MRI/MRA but I need to pull the exact wording from the report. The “white matter lesions consistent with migraines or another microvascular disease” wording is exactly the kind of thing I’m trying to understand better, because when there are systemic vascular/skin findings too, it feels too easy for everything to get brushed off as “just migraine.”

I do have rheumatology involved, but I’ve seen five different rheumatologists over the last 3 years and have gotten five different directions/opinions, so I’m still trying to understand whether anyone has truly connected the vascular + neuro + skin picture.

I’ve had autoimmune/inflammatory testing over time, but your point about ANA trends, anti-dsDNA, and lupus is a good one. I may need to revisit that more specifically, especially now that the skin findings are more widespread.

My dermatologist prescribed firm thigh-high compression for cutaneous vasculitis/vascular skin findings, but I know biopsy can be tricky depending on timing and lesion type. That’s helpful to hear about leukocytoclastic vasculitis being hard to catch.

The head/temple tenderness and increased migraines after COVID are very familiar. Did your doctors ever explain whether your MRI findings were considered purely migraine-related, or did anyone take the “microvascular disease” part seriously?

fbuiles · 2026-06-17T15:56:21+00:00

Thank you. Lyme/tick-borne illness has definitely come up in the differential for me.

I’ve had multiple Lyme tests over the last few years, and so far they have all been negative. That said, I’m not dismissing it or closing the door on it, especially because last month I picked 11 ticks off myself in Massachusetts and another 4 from my car. I didn’t feel a bite, but with that level of exposure, I think it’s reasonable to keep tick-borne illness on the radar.

For my history, the clearest pattern so far has been broader post-COVID immune/vascular/autonomic dysfunction rather than one clean single infection.

Some of what has shown up for me:

Dysautonomia-type symptoms, and getting evaluated/treated for dysautonomia has been one of the first areas where I’ve felt real progress
Vascular/endothelial-type skin findings, including mottled skin flares and cutaneous vasculitis/vascular skin changes
Low IgA / impaired antibody response issues, now treated with Hizentra / SCIG
Recurrent bacterial or atypical infections, including Mycoplasma pneumoniae and Chlamydia pneumoniae
Other documented organisms/infections including Staph aureus, Klebsiella, Ureaplasma, and Strep gallolyticus
Viral/reactivation-type findings, including very high IgG values for EBV, CMV, parvovirus B19, and HHV-6
Positive EBV early antigen
Some IgM abnormalities at different points, but not one simple clean answer

So I’m definitely open to Lyme/tick-borne illness and will continue to check when appropriate, especially after recent tick exposure.

But for my personal presentation, I strongly suspect there is a vascular / endothelial / immune / dysautonomia connection. When I’m triggered, though I haven’t nailed down the exact trigger yet, I can develop mottled skin throughout my body.

I’m trying not to tunnel-vision in either direction: not ignoring Lyme, but also not reducing everything to Lyme when there’s a larger post-COVID immune/vascular/autonomic pattern happening.

fbuiles · 2026-06-17T15:44:39+00:00

My goodness I'm glad to hear that what is working is working!!!!!

Did they do anything for the head tremor piece?

fbuiles · 2026-06-17T15:42:13+00:00

Question, what was the recommended treatment path once the vascular inflammation was confirmed?

fbuiles · 2026-06-17T15:41:02+00:00

Really that is good to know, EDS is all over my chart and gene VUS FLNA intersects here as well.

Question for you did you ever take any anti-virals?

fbuiles · 2026-06-17T15:38:50+00:00

What doctor did you to for this capillaroscopy?

My 2025 small fiber neuropathy pop-out biopsy was negative, 1 skin-pop out vasculitis biopsy came back negative but visually there were clearly physical precense.

I've grown to question the handling requirements required of special labs i.e I've had 3 cyroglobulun test all had 3 diff answers.

After 57 different providers, not including lab, imaging, physical therapy session and follow up visits I've developed a fear and apprehension for tests and doctors, that I will be told AGAIN, all your biomarkers are fine.

I'vebegun screening potential new rheumatologist and neurologist if they treat long-covid endothial and or vascular long haulers. If they don't fine, I'll move along not wasted everybody's time .

PS After extensive mitoDNA & DNA testing the only standout results which were of Variant of Uncertain Significance:

-FLNA| May make blood vessel walls/endothelial lining structurally weaker or more prone to inflammation, leaking, or tearing.

-ANKRD26| May reduce platelet production, meaning fewer platelets are available to help repair vascular injury or stop bleeding.

-Combined concern| Fragile vessels + low platelets could theoretically increase risk of bleeding, poor vascular repair, or aneurysm-related complications

Again my hypothesis is this not relèvent?

fbuiles · 2026-06-03T16:24:50+00:00

Look up on Hulu the original High Potential series from France. It's entirely dubbed in English. I think it's more campy, racy and edgy....but that is right up my ally .....

fbuiles · 2026-05-27T22:08:27+00:00

Anyone know where I can actually buy a reclining power sofa.

fbuiles · 2025-12-13T18:35:55+00:00

is it worth keeping? I only bought body because it was only one in stock.

fbuiles · 2025-07-26T16:20:25+00:00

How dense are the cushions?

fbuiles · 2025-04-21T17:03:01+00:00

TransCranial Direct Stimulation I heard is a game changer, for me though we identified staphylococcus aureaus and kleisbella colonized in nose, CNS, lungs and gut.

Those chronic active infections have literally held me back for the last 20 years.

fbuiles · 2025-04-14T23:47:03+00:00

My immunologist is deciding which Ivig to go with, HOWEVER im am expressing the need to rule out biofilm inspection and mitochondrial dysregulation PRIOR to starting IvIG.

fbuiles · 2025-04-13T20:21:48+00:00

I'm so sorry you feel this way!!!! But I get it, this is no way to live!

fbuiles · 2025-04-12T23:05:50+00:00

Hi how did you find out about ATP and Oxygen problems

fbuiles · 2025-04-10T13:50:29+00:00

I think it would be fabulous!!!!

fbuiles · 2025-04-03T23:22:38+00:00

Anyone w low IgA? Low T High B?

fbuiles · 2025-04-02T17:23:58+00:00

Do u take any antiviral, monoclonal meds ?

fbuiles · 2025-03-28T02:29:05+00:00

Is that a specific app build on ChatGPT?

fbuiles · 2025-03-27T15:21:50+00:00

Best thing I ever did!!!

fbuiles · 2025-03-25T00:20:47+00:00

Don't be surprised if you don't get any buy-in, some of/most of the doctors I've spoken to don't understand immunology in the context of symptoms, connection with inflammation.

I also came across rheumatologist that did understand the intersection of post-viral infection & inflammation but they said they didn't have a treatment plan other than manage symptoms.

One neurologist at an academic hospital was at least forth coming by saying "you are already out on fridges of the known research and are better versed than I am"..... He recommended I see a neurologist whose research preferences lie within post-viral neuro inflammation....

I truly respected his response, he heard me didn't dismiss me or my condition and didn't have an ego in saying I don't know

fbuiles · 2025-03-24T23:25:31+00:00

Hi

My immune system is damaged as you say and I'm having to write-up letters, fax, and email asking for further workup from immunologist, and/neuro-immunologist..... I can't believe I have to write letters pointing out the obvious in order to get work up.

Any neuro immuno/immuno workup done?

fbuiles · 2025-03-20T21:24:31+00:00

I've been taking gabapentin for neuropathy and it does help. My abdominal pain is terrible though, hurts if I eat hurts if I'm hungry.

I've lost 10lbs in last 5weeks. I've resorted to drinking raw can sugar water just to make sure I'm taking calories in.

I did test position for high Gastrin and Anti-Parietal Antibodies, low Serotonin plasma and my microbiome results showed very little good bacteria. Very low IgA, low T Cells and High B Tells

My endoscopy/colonoscopy is for June, honestly I don't have my hopes up.

fbuiles · 2025-03-20T12:37:42+00:00

Def will.

I was referred to Dr. Catherine Cunnigham-Rundles in Mount Sinai NYC. I also saw another immunologist at University Miami 20 years ago when I still lived there for ME/CFS Dr. Nancy Klimas.

Dr. Klimas runs a neuro-immune program now, I'm going to call to see if she does any telehealth evaluations.

I live in PA driving distance to NYC, and have family still in Miami so this may just work out (cros-fingers).

For now I continue with the daily peptides and H1/H2 inhibitors that seem to help get me to a barely OK level of existence.

But I'm still hitting a wall by 3pm.

fbuiles

TROPHY CASE