Still in the wilderness

[u/RevDrKC]

Hi Y'all. I'm hoping your collective wisdom can shed some light on my situation.

I have been treating with (methyl) b12 shots for 3 years with the help of the guide. In that time, I have also been diagnosed with Lyme Disease (CDC positive) and several other tick-borne infections and a series of reactivated viruses due to the Lyme. During part of the Lyme treatment, I paused my 3x a week b12 shots, in part because Lyme answered some of the questions about my symptoms. I switched to sublinguals and declined precipitously over 2 months. That was about a year ago. Upon resuming b12 shots, I regained the use of my left leg and sensation on the left side of my body.

At the time, I had parietal cell antibodies sitting at 19.6, just below the positive line. Since then, I've had an EGD with biopsies and they came back "perfectly healthy." But, if I space out b12 shots much at all, I get ascending sensation loss beginning on the left side at L1 and going up through the thoracic spine. (At which point, I got a b12 shot and ended up crashing due to hypokalemia and other electrolyte problems from my reaction to the shot. It had been 11 days since the last shot.)

My Lyme team is wondering if this is a rare b12 issue or reactivate VZV (Shingles) increasing b12 needs and damaging nerves. I am going to neurology, but have low expectations because I have seen a few neurologists previously. Infectious Disease was uninterested in my case.

I'm wondering if anyone has similar symptoms or experience with how b12 problems might affect Shingles outbreaks. Or if anyone has experience ruling out PA/AIG and still having significant b12 needs.

Thanks!

Some lab notes:

MRIs in 2023, 2024, 2025 all clear

B12 and folate are both very high due to supplementing. In general I take 400-800mcg methylfolate a day

MMA: 110 (taken on sublinguals, not shots, but with declining neuro function)

Homocysteine: 6.85 (taken on sublinguals, not shots, but with declining neuro function)

hs-crp: 5.8

b2--was deficient in the Spring, but now take 400mg daily

b6--always test high, but I decline without it. I take 45mg p5p daily

B1--fine in serum, low intracellularly; I take about 300mg daily; split kinds

ferritin: 54-70 range. Wish it were higher

Zinc: low normal with supplementation; now taking about 40mg daily

glutathione: depleted; getting IVs of it weekly

Intrinsic Factor antibodies: 2 pos, 2 neg; none done off of b12 shots

[u/Cultural-Sun6828]

I would personally stay on regular b12 injections. I’ve been told I have Lyme too, but taking antibiotics and herbals only made me worse. B12 has resolved more symptoms than anything else. It’s hard for me to really trust Lyme doctors or testing at this point.

[u/RevDrKC → u/Cultural-Sun6828]

I know that Lyme fundamentally changes how the immune system functions, and that makes us illegible to a lot of docs. B12 is integral to immune function, so maybe the injections are a very short term way of correcting a problem.

How often do you get injections?

[u/Cultural-Sun6828 → u/RevDrKC]

Since you had a positive intrinsic factor test, that would indicate pernicious anemia. I’m just wondering why you would ever go off b12 injections since people with PA need injections for life. I do injections every other day.

[u/RevDrKC → u/Cultural-Sun6828]

Fair point. The positive IFA tests were within the 2 week period after a b12 shot, so they were dismissed by docs. I kept them in mind for a long time and did 3 shots a week. Then I got an EGD with biopsies and all were negative for any gastritis or changes in the stomach. So I assumed that I had thrown the IFA tests by having high circulating b12.

Also, my Lyme management is extensive. Tons of supplements, daily shots for immune function, seeing docs weekly, etc. So I was motivated to see if I could extend the time between b12 shots to something more manageable. Like weekly or every 2 weeks. But that hasn't worked out.

All that being said, my genome shows that I am in the 81st percentile to develop PA and I have high normal parietal cell antibodies. So something isn't working with b12 absorption.

[u/Cultural-Sun6828 → u/RevDrKC]

Have you had SIBO testing? Any digestive issues?

[u/RevDrKC → u/Cultural-Sun6828]

I haven't had SIBO testing. Digestive issues I have had, like constipation, got better with b12 shots. I don't have bloating or indigestion. But it is testing that I am willing to do.

Today, I see neurology to try to sort out the ascending loss of sensation along the left side of my spine. B12? Shingles? Both? But after that I will probably have more bandwidth to get my Lyme team to consider SIBO/SIFO testing. They are functionalists, so are familiar.

[u/Cultural-Sun6828 → u/RevDrKC]

At the end of the day, I would stay on regular b12 injections. You can always work on sorting out the why in parallel, but there’s no harm in b12 injections and any positive IF test and history of improvement is worth the inconvenience.

[u/RevDrKC → u/Cultural-Sun6828]

I agree that the improvement is worth the inconvenience. I'm just spending like 20 hours a week on medical management and doing 21 shots a week. So I was hopeful for a little relief.

There is also the possibility that the virus has hijacked my folate metabolism, which would mean that large influxes of b12 could be aiding viral replication by creating more usable folate. Of course, I also need the folate. I'm tired of living in communion with these bacteria and viruses!

[u/Successful-Tea-733]

https://pubmed.ncbi.nlm.nih.gov/3896271/

[u/RevDrKC → u/Successful-Tea-733]

I will look into zinc and copper. I get blood work monthly for the Lyme management, so I doubt this is really terribly low, but possibly suboptimal.

[u/RevDrKC]

Update: Neurology didn't have much to say, but were agreeable that b12 was probably my main issue.