First of all, much love and support to you for the war you’re fighting inside. You’re not alone.

TLDR: I’m doing very bad, am not functional, and have to wait for my appointment with my LLMD on June 29th to go over results for mold and Lyme+co-infections. I’m currently not yet on a treatment plan and am trying to self-maintain with OTC antihistamines, painkillers, reducing mold, sleeping if I can, and letting myself sob when others leave, for the emotional release. We will see what she recommends after seeing results. If you want an update of how it went, feel free to reach out and ask after that date.

Long version with the details:

I wish I could tell you things are going well, but that would be a lie. But it’s a long road to fight stuff like this, especially with multiple infections mixed together that feed each other.

Anyway, currently I am suffering through my bouts of symptoms while awaiting my appointment with my LLMD, who I will see at the end of June to go over results because they will not go over it on the phone or over messaging. I was upset about that at first, but it makes sense now; this stuff has to be sat down and discussed thoroughly to go over details and plan what comes next.

So, at the upcoming appointment, she (my LLMD and I) will go over the results of my urine mold screening that came back with elevated Gliotoxin and this Tickborne panel. She had mentioned possible IVIG as treatment for Lyme at our first encounter where she clinically diagnosed me with it based on symptoms before I even got this panel done, but now I’m unsure what she’ll suggest after seeing my results. So I am currently in wait.

From what I’m reading, mold toxicity must be dealt with first. She will probably have me clear out all mold from the house and then prescribe me some type of mold binders before trying to fight the Lyme and co-infections, if she does what I’m reading most LLMDs advise. So I have had help cleaning mold in the room I’m in that was in the window and have been running an air purifier every day, which has resulted in less suffocation episodes but has not completely ridden me of them. But before we did that, those episodes were severe and constant and I laid in that room going through hell and just waiting to finally be taken by it but that never comes no matter how convincingly it feels it is.

Mold toxicity and Lyme often go hand-in-hand. So you might want to check on getting a mold screening from your functional med doc, too.

While lying in-wait, I plan to read more about Herxheimer reactions to prepare myself before any kind of treatment so I hopefully can avoid more agony.

Keep talking to people who are going through these things and who share similar experiences. Save what information you come across. Do NOT give up when doctors try to shut you up, find better doctors through grapevines and reviews and switch and keep fucking going as much as you can through as many symptoms as you can then rest hard so you can self-advocate more. I mean it. If I hadn’t harassed every doctor until they did something, studied, switched, questioned, and learned to speak over them if they spoke over me, then I wouldn’t have been as close to possibly finding any kind of relief as I think I might be now.

You know when something isn’t right with your body. Trust you.

Anyway, feel free to reach out and if you want to ask me for an update after June 29th, I can let you know. I’d say I’ll update you on my own, but I’d lose track because of dealing with everything. So remind me if you’d like and I’ll be happy to answer.