Posted 1/30/2025 12:52 PM (GMT -5)
While a current MRI might be useful to rule out MS, it might be a good idea to seek testing for autoimmune disorders, to rule out autoimmune neuropathy conditions. While autoimmune processes can be triggered by tick-borne infections, they might require direct treatment as well, not just antimicrobials, in order to halt and reverse the damage.
Could you say more about your vision loss? What's the diagnosis?
I identify with your predicament because I feel mine was similar, just based on what you've shared here recently. My symptoms were fully disabling and mainly neurological, and years of antimicrobials didn't help. I just kept getting worse, including vision loss from central serous retinopathy, vertigo, paresthesia, nerve pain, weakness, and brain fog. LLMDs were sure that Lyme, co-infections, and mold were causing my illness, and I had positive tests for all. I developed worsening dysautonomia (including POTS and gastroparesis, where the nerve signals to the gut stop) and mast cell activation syndrome (which directly involves nerve signals and is not just the respiratory anaphylaxis and rashes that people think of first). I had lots of MRIs and other neurological tests that were unremarkable.
If you have ruled out MS, ALS, and autoimmune disease, and treatments for tick-borne infections have not made a meaningful difference in years, then it might be worth considering other routes to restoring your nervous system and reducing neurological inflammation. Once we are chronically ill, it's usually not one single silver bullet that turns things around, so we have to keep trying things, even when we've exhausted the list of stuff that resonates. Off the top of my head:
- Microdosing or macrodosing psilocybin
- Cannabis or CBD
- Limbic system retraining (DNRS, Gupta, etc.)
- Nervous system regulation programs (Primal Trust)
- Addressing mast cell activation, if applicable
- Addressing mold toxicity, if applicable
- Trying long COVID treatments (since what you describe can happen in long COVID)
- Extensive daily attention to stress mitigation
- Vagus nerve toning exercises
- Looking into polyvagal theory
- Looking into the call danger response
- Magnesium, curcumin, adaptogenic herbs, chamomile, lemon balm, medicinal mushrooms (esp. lion's mane), etc.
- Tapping (EFT)
- Somatics
- Breathwork
- Vigorously safeguarding sleep
- Healthy device habits, reduce EMFs
- No caffeine
- Craniosacral therapy
- Acupuncture
- Attention to ergonomics (there really is a lot people don't consider)
- Anti-inflammatory diet
- Mindful movement (like restorative yoga)
I found several of these things helpful, especially craniosacral therapy and acupuncture, but what really helped me turn the corner were: addressing mast cell activation syndrome (including low-histamine diet, curcumin, and quercetin), doing a limbic system retraining program (DNRS), and really committing to nervous system regulation. These things resolved all of the symptoms I mentioned before. The Primal Trust program has been great for maintaining my healing and building a community of people who also have recovered from the same chronic illnesses.
No two stories are the same when it comes to resolving long-term chronic illness, so maybe hearing from a variety of folks will help by providing more ideas. I hope that you find lots of possibilities to give you some hope!