u/Doublek278

Looking for a bit of hope here, perhaps someone who has been through this. Going to start off with what I've done so far:

1). Got three weeks of IV antibiotics prescribed

2). Ordered a mold test

3). Appt for end of the month with a LLMD

Background:

In December my father started losing his voice. We only noticed it after he had the flu, and his voice didn't return. Since then, he ran the gamut of testing- ENT, pulmonologist (diagnosed with lung cancer, had not spread, had surgery and removed the cancer fully), neurosurgeon (found spinal stenosis and severe compression of his cervical spine), and neurology. His brain MRI showed some abnormalities (I'd have to double check what) and his neurofillament light chain was high. They ran every blood test, including Lyme, nothing came back. They started saying ALS. He had an EMG that was almost clean- it flagged two spots, both of which had other plausible explanations (the spinal compression). I requested a spinal tap to check for paraneoplastic. While waiting for the results, we got a second opinion - they also said bulbar ALS. Devastating.

Literally the morning after his diagnosis, his spinal fluid came back positive for Lyme with 6 bands (IgG). Thankfully his neurologist offered three weeks of IV antibiotics, which we hope to start this week. I also made an appointment with a LLMD, anticipating the three weeks won't touch it.

My Dad is unwell. He has a very limited voice and has trouble speaking, and some issues swallowing. His mobility is shot, but from joint and back pain- not from weakness or muscle twitching (though after the EMG, that one spot did start twitching). I know the neurologists saw "enough" to diagnose ALS, but I really want to understand if he could be having symptoms this severe from neuroborreliosis. And if so, can I expect to see any improvement for him within those weeks of antibiotics? Something that could hint to this being Lyme related?

To add to it, I do not know when he was bit (we are in the NE though, so ticks are abundant) but he spent quite a bit of time last summer in a property with extreme amounts of mold. He wasn't sleeping there usually, but he was taking care of the house and his sick brother.

I guess I'm looking for hope. A lot of people are saying it's totally possible it is Lyme, but has anyone here ever experienced neuro Lyme and an almost complete and rapid loss of voice, among other symptoms? If so, can we hope to see any minor improvement from a first round of antibiotics? The ALS diagnosis was a blow, after desperately holding out hope.

Hi all,

I'm looking for help asking the right questions to advocate for my father. I'm concerned other possibilities are being overlooked.

Background:

My father started losing his voice in December- possibly before, but it was not perceptible to people who saw him regularly. This was most noticeable after a bout with the flu, but once it lingered his partner raised concerns. The first thing they found was a node on his lung that was determined to be lung cancer, but a PET scan showed it had not spread. They said the voice loss was not related.

He then saw an ENT, who noticed severe reflux issues and vocal cord dysfunction, but....they said that wasn't the reason for the voice loss.

Numerous blood tests were run, nothing came back positive or conclusive. In the interim, he was diagnosed with spinal stenosis, which causes quite a bit of back pain. This surgery was delayed in favor of the surgery for lung cancer. Over time, the pain increased drastically. He also started seeing swelling and pain in unrelated places - a knee, ankles, and then swelling and 10/10 wrist pain that was unofficially diagnosed as gout.

I recently insisted on a parneoplastic panel and we are waiting on that. He has an EMG this week. I just do not feel convinced it is ALS. He has no other weakness, just the voice loss and mistimed swallowing.

What led me to finally post is that he just had the surgery to remove the cancer on his lung. He woke up from the surgery with a slight droop and almost no voice, slurring heavily, etc. They basically wrote it off because ALS was referenced in his charts. He did finally get a CT to confirm no stroke, but every time was flagged a concern they shrugged it off as "probably the ALS." We have no answers on the swelling or joint paint.

Further, the MRI showed encephalitis on the temporal lobe (excuse any lousy wording here), which aligns with parneoplastic. I know we just have to wait on those results but I'm worried if they come back negative and the EMG shows something, he will get diagnosed without explanation for all the other issues that especially seem autoimmune.

We do have an appointment at Mass General for early June, so I know a lot of this is just patience and waiting, but it's hard to watch his voice deteriorate, and I constantly worry about what a diagnosis might do to his overall health- especially since it doesn't seem to totally fit the mold.

Would love guidance on anything else I should be pushing for or asking about. I do recognize this may ultimately be the diagnosis, but I want to make sure we have truly reviewed everything.