Sister with Lyme-Another Update

Here's the latest in my sister's (as well as my and my family's) ongoing saga...

She is still dealing with tremendous pain. On a day-to-day basis, she gets small reprieves and short periods of relative relief, but nothing really sustained or appreciatively better than the nadirs (the one thing that consistently gives her a bit of relief is ativan). Her light sensitivity has gotten worse, and she is often confined to a dark room. She goes into stupors occasionally, and describes them as feeling like mini-seizures. The buzzing pain from what is likely small-fiber neuropathy is near-constant.

There are still, I think, major neurological and immune issues that have not been addressed properly. One difficulty we faced recently was our LLMD situation; the doctor was a terrible communicator and scattershot planner with poor organizational skills and no real case-management abilities. She had training in all of this stuff, but all of her flaws negated her expertise. We recently became fed up and are switching to a different LLMD; we'll be meeting with him in a couple weeks.

She is actually not even taking anything for the infection itself right now. In the last few weeks, we discontinued the disulfiram and the ertapenem/rifampin/bactrim combo. She is, however, still receiving phosphatidylcholine infusions twice a week.

One thing that we continually wonder about is whether she has encephalitis of some kind. The problem is that we've been unable to obtain a specific diagnosis to that effect and the access to targeted treatments that that would ostensibly entail. It really seems as though that and the whole pain complex/small fiber neuropathy is going to need to be treated separately alongside the infection itself.

Just wondering people's thoughts on all this, especially with regards to the light sensitivity. Does something need to be specifically addressed there? Also, does anyone know of good forums for small fiber neuropathy? Thanks.

This is a long, ugly slog, and it feels like hell. I just want it to end.

when something seems to give relief i always ask myself, why does this work? you said ativan gives her a little bit relief. benzos like ativan aren't actually painkillers so i would look deeper into how ativan works. please keep in mind not to use ativan long term, unless a doctor tells you its ok of course.

my point is that you might learn why it is helping her a bit and then you can get a better idea of her situation. sounds to me like it might be originating in her brain. something might be firing off pain signals. i'm not a doctor though.

one more thing, you mentioned mini-seizures. is it like mini-shocks in her head? she didn't happen to have stopped an antidepressant recently has she? sometimes thats a withdrawal symptom. look up "ssri brain zaps" online. it goes away with time but it happens when you stop too fast.

yup, thats why i mentioned to look more into it. i just personally wouldn't narrow things down that fast. sometimes you can learn more than 'it blocks the pain'.

dcd2103 said...
hi mak, we've communicated about this before you and I.

Have you tried to obtain IVIG for her? Please understand that all of these antibiotics and especially disulfiram are likely making her condition much much worse. She needs to stop everything and get on IVIG, its the only proven treatment for SFN. I've seen so many people go down this antibiotic path ad nauseum only to get markedly worse.

Dr David Younger in NYC is the best person to see to obtain said IVIG. dont care if youre not located near him, fly out to see him. You will pay out of pocket, but its worth it

Hi dcd. Thanks for telling me about SFN in the first place a few months back. What she experiences really seems to line up with the disorder, and I'm more convinced than ever that she has it. My family has considered IVIG, but there are two issues with it: cost and effectiveness. The treatments are very pricey, as you know, and I've read that their efficacy is still a matter of some debate. I know that you yourself had mentioned that they didn't work for you. How many of those treatments are necessary, and how can a person tell if they're working or not?

Mentioning IVIG reminded me of the Pediatric LLMD Dr J - he uses (used ? - has he retired?)
IVIG.
Here’s an interview - he talks about IVIG throughout
Worth looking at it

https://lymeconnection.org/support_and_resources/meet_the_lyme_disease_experts.html/title/dr-charles-ray-jones-straight-talk-with-a-fearless-pediatrician-

Has she been tested for mycotoxins?

Kelly,

That’s interesting. I wonder if any of the systemic proteolytic enzymes (Serrapeptase, nattokinase, lumbrokinase) will help improve blood flow to the brain?

For those who have studied ketosis, would keto diet help with this? I ask because children with epilepsy and Alzheimers patients are often treated with keto or high fat diet.

Mak,

Has she been evaluated for intracranial hypertension?

Post Edited (WalkingbyFaith) : 11/19/2021 5:42:31 AM (GMT-7)

KellyR said...
Hi,

I deal with bad light sensitivity and it is the worst. I am still looking for a treatment to make it significantly better but I am convinced (at least for me) that the sensitivity is caused by encephalitis. I was diagnosed with that a couple of years ago based on my abnormal SPECT scan (looks at blood flow to the brain) and other symptoms. The only time that I have not had light sensitivity in many years was when I had a high fever one night. My light sensitivity completely went away…it was crazy. But, unfortunately, returned once the fever was gone. That happened to me right before I saw a Lyme specialist so I asked him about it. He said he doesn’t know but if he had to guess he would say it’s because a fever causes dilation which increases blood flow to the brain (and he told me this before he even knew I had an abnormal SPECT scan). So I am convinced it has something to do with the low blood flow to the brain. Obviously this could be completely wrong but I really think it plays a role. Your sister may have a completely different issue but I think if she’s hasn’t had a SPECT scan it may be something to look into.

You may also want to look into Irlen glasses. I know this has significantly helped some people with bad light sensitivity but it didn’t help me at all. I went for a consultation and no colour provided any relief for me but it has helped a lot of people. It costs a couple hundred dollars for the consultation.

Hope your sister can find something that helps.

Hi Kelly, thanks for the reply. We tried the Irlen route, and no luck. I'm pretty sure it's encephalitis-related, as I've said, similar to your case. We'll keep pursuing that angle.