Update on Sister and a Question About Timelines

My sister is seeing the same lyme-literate MD she has been since late November. He’s taking a mold and mycotoxin-centric approach. Phosphatidylcholine administration, 15 mL intravenously two days a week, oral PC every day (forget the dosage). I believe this is the fourth week of the 15 mL IV target dose (she spent several months working upwards, 1 mL added per week), and I think the fourth or fifth of the oral PC supplement. Taking a couple items for GI detox.

No noticeable improvement yet, much to our frustration. We have no idea if this stuff is working and we’re just not yet seeing the benefits, where it’s only a matter of time. One of the most maddening things about this disease is not having good “guideposts” or “waymarkers” to gauge progress. Seems like all you can rely on is blind faith sometimes. It should be easier than that, and it’s frustrating that we don’t have better solutions for this ailment yet.

This brings me to a question. What were people’s experiences with timelines of treatments? Did some people have to stick with something for several months just to see even mild improvement? Again, how long can things like this end up lasting, potentially? What can we expect, at worst? I would appreciate people being frank about this stuff. Good to know exactly what me and my family might be up against.

Seems like a waste of precious time if you ask me. You yourself said she likely has encephalitis. We know she has small fiber. Mold can exacerbate it but it doesn’t fit the mold footprint. Usually infectious autoimmune. Antibody agains the brain. Normally IVIG/Rituximab/plasmapharesis + antibiotics. Needs to see an encephalitis specialist and have the Mayo clinic encephalitis panel run, ENS02

https://neurology.testcatalog.org/show/ens2

Call dr younger and leave a message or find a specialist in CA. Get on the PANS/PANDAS Plasmapharesis group on Facebook and ask some questions. I’ve made these suggestions before, PC isn’t going to fix this

Yah this stuff can be confusing. I do think there are PANS/PANDAS specialists who can run tests to figure it out. Unlike most things in lyme, the encephalitis stuff is actually accepted by western medicine and can be tested for in many cases, such as looking for said antibodies against the brain.

There's a group on FB called "PANS/PANDAS Plasmapharesis". All people with children and teenagers who are having severe neurological issues. Go in there and describe your sisters situation, see if there are similarities. If there are, you can easily find who these people are going to to get high dose IVIG and plasmapharesis (and rituxan if she needs to go that route).

A few things come to mind for me about this.

First, if a person is being treated for mycotoxicity but seeing no benefit, then there's a chance that the trigger (i.e. mold exposure) is still present. Sensitive individuals need to be removed from mold exposure, sometimes in a maddeningly comprehensive way, before they will see any improvement, no matter how many PC IVs or binders they take. Did she replace any belongings that are porous or have motors? (All appliances, all upholstered furniture and mattresses, all books and papers, bedding, sometimes clothing....) Move someplace that tested very low-mold an an ERMI test? Remove any carpet, replace HVAC system, etc.? Just wondering if there's any way she's still being exposed. Does her doctor believe her symptoms are from mycotoxin exposure because of urine testing or because of symptoms?

Second, I'm wondering about mast cell disease. Mold exposure often causes CIRS (chronic inflammatory response syndrome) and MCAS (mast cell activation syndrome). Those account for many of the symptoms people associate with mold exposure. Is she being treated to stop the cycle of over-reacting mast cells? That can make someone feel better within days or weeks, or even hours, if they find the right combination of trigger avoidance and mast cell stabilizers. Made a massive difference for me.

Third, I understand that she may have no option to live elsewhere, but living with your parents sounds like a very toxic situation for her psychologically, which will cause dysfunction in her limbic system all by itself. Family therapy is a nice idea, but therapy takes a long time to make lasting positive change, especially in something entrenched like a multi-decade family dynamic. If she cannot live elsewhere, then I strongly suggest a limbic system retraining program for her as well as an individual therapist for your sister. Family therapy will address the family dynamic, but she needs an individual therapist to address her childhood trauma and chronic health stress. Fortunately many therapists can do therapy remotely now, making it much more accessible to those of us who are chronically ill!

I remember that she is reluctant to try limbic system retraining, and I know you can't force her to do it, but it sounds like a very good idea for her.

Has she been tested for autoimmune illness or encephalitis, or are those just things you suspect? I had brutal brain swelling feelings, disabling sensory sensitivity, miserable neuropathy, and lots of other weirdness without having (or at least not testing positive for) autoimmune illness or encephalitis. It's frustrating, but many of us end up with similar symptoms but from different causes! Trauma, infections, autoimmune illness, and mycotoxicity all could be in play, or some subset of those, or none of the above!

Have you read the book Toxic by Neil Nathan yet? It might be a useful framework for understanding what's going on for your sister and for discussing the treatment plan with her doctor. It doesn't sound like frequent PC IVs are going to make much difference for her.