Feeling hopeless and discouraged

So I’ve only been treating mold toxicity for about a month now but man, I am feeling hopeless and discouraged.

I was an extremely healthy, active, vibrant young woman before I got sick. I have an amazing career, live in a beautiful city, and am still trying to desperately hold on to even a sliver of my previous life. This morning I walked to and from the dry cleaners and returned feeling numb, exhausted, and completely shaken. I’ve completely lost my sense of identity and no matter how hard I try to explain that feeling (and my laundry list of physical symptoms), no one in my life seems to understand.

How do you all persevere through the ups and downs? I genuinely question whether I will ever improve, or if this is my new reality. I’ve had boat rocking vertigo for two months and although it is manageable at times, I can’t imagine living with this much longer. I have internal vibrations up and down my spine, and I never feel fully grounded or stable.

Not sure what I’m looking for here. Just needed to vent to people that understand.

making progress is what gives me hope. The 2 things that helped me the most was dental and parasites. If you havent seen a biological dds its worth a checkup. Treating parasites makes sense also both greatly helped and gave me hope for full recovery

Why would you waste time chasing a Multiple Sclerosis diagnosis? MS is just misdiagnosed Lyme. Just treat the Lyme.

I’m seeing a functional medicine doctor. He said I need to treat MCAS and mold first and if I’m still not improving, then we’ll treat for Lyme. All of my tests were negative though.

First of all, how does your doctor know that the cause of your symptoms are mold or MCAS, is it based on a hunch?

I deal with mal de debarquement syndrome, yes. For a while it was severe, but it's much milder now. And it also freaks me out less now, for what that's worth, because I know that it's transient and doesn't mean I have a brain tumor! But I know that it can be maddening. For me, it arises when I am herxing, actively detoxing, stressed, or worn out. It also sometimes flares alongside POTS and barometric pressure sensitivity. I think it's neurological inflammation.

I saw the "top" dizziness specialist in Boston, as well as being volleyed back and forth between ENTs and neurologists. No one knows what do do with this aside from test you for hearing loss and vertigo. I actually introduced two of them to the phenomenon of MDDS....

The most helpful things for me were essential oils, DNRS, and being mindful not to overload my system. It's so easy to make the mistake of overloading my system when literally every complaint I have is met with someone telling me to ingest something else! There's a doctor at Mount Sinai in NYC who treats MDDS with a cool mapping technique and a moving platform that tricks your brain back into proper proprioception, but I'm not sure how helpful that is long-term if the issue is inflammatory and biotoxin-induced or pathogen-induced.

Websites about MDDS contain links for suicide hotlines. You are not alone in feeling miserable about it!

At first (four years ago) I also just had one reactive band on Lyme tests, including through IGeneX, but I tested positive via LabCorp for Borrelia hermsii, Mycoplasma pneumoniae, and Epstein-Barr virus. Later a PCR urine test found Borrelia bergdorferi, Bartonella baciliformis, and Babesia divergens. And recently, now that I have a slightly more functional immune system capable of making the antibodies that tests measure, I scored a positive Borrelia bergdorferi from LabCorp. I definitely have a history of tick-borne infections! But antimicrobial treatment never has helped.

So I have explored mold, too - plenty of wonky results on the Shoemaker CIRS panel of tests, the genes, and high ochratoxin A through Great Plains. I also have MCAS, POTS, HPA axis dysfunction, and other conditions that make treatment for anything challenging. I uprooted my family, spent a fortune, and overhauled our lives to move and eradicate mold and mycotoxins from our home and belongings. I've actually declined since doing that, but to be fair I have not used binders yet. Would you mind sharing a little about your mold protocol and whether you are finding it helpful yet? I definitely hear that processing out biotoxins can be very unpleasant at first!

Do you have MCAS as well? Did you find Nathan's book helpful?

I know you just wanted to vent, so obviously feel free to ignore my questions. I definitely can commiserate about how awful the constant sensation of movement is, and how tremendously dispiriting it is to do a small errand and be toast as a result. I was relatively young and vigorous when I got sick, too, and wrapping my mind around how different my life was becoming was incredibly difficult at first. Feeling that way is completely natural, and it bugs me a lot when people tell you to be grateful for your journey instead of angry about your slog. But know that this is temporary. There are better days ahead, even if it takes a while.

Be as dark as you like. I bet most of us have spent some weekends sleeping and crying!

I think it's very reasonable to assume that this flare in symptoms is because you are detoxing. As the mycotoxins mobilize, you also could be mobilizing other things (pathogens, parasites, metals, etc.) that burden your system as well. An increase in inflammation will exacerbate MDDS and basically all the other symptoms....

My heart goes out to you, putting on a brave face at work. Do you find that electronics make it worse at all?

I forgot to mention also lymphatic drainage and massage as ways to keep things moving in terms of detox and inflammation. Even gentle movement or swinging can help keep things moving. I love craniosacral therapy, in this case preferring someone who does more of a manipulative practice instead of the biodynamic kind. Also a self-administered practice such as this can help for the head:
https://www.youtube.com/watch?v=QA-wi0d7-Ro

I can't imagine tolerating a sauna, especially with MCAS (heat can be a trigger). People say that at first saunas can make symptoms much worse, but some say the opposite and find them very restorative! One of my LLMDs recommended saunas only after a few months of treatment, suggesting Epsom salt baths in the mean time.

Which symptoms feel like they might be an emergency to you? I went to the ER a lot early on, so I might be able to share what an ER is equipped to do for various things.

As for how long to suffer through symptoms you think are the result of treatment and detox, I tend to agree with Neil Nathan that exacerbation of symptoms is to be avoided. If you can pinpoint which things are making you less functional and causing intolerable symptoms, then lower those doses or even stop them until you return to your baseline.

Also, with regard to tick-borne disease, high c4a also happens with Lyme, and high VEGF happens with Bartonella. Did you ever have a CD57 test? I don't disagree with starting to treat mold and MCAS first - in fact I think more docs should recommend that! - just saying that unfortunately those stealth microbes might be low-level contributors to inflammation and immune dysfunction.

Definitely hang in there. Things won't always ben so hard!