What Are Your Symptoms Like? Are They Also 24/7? How Do You Cope?

Hi there evryone,

So I have to ask, do any of you also feel like you are always stuck? The reason I feel like something Is wrong with my brain is because I feel like I am always in another world. Like, when I look at something, it looks as if I am looking at gas coming out of a stove before it ignites with flame. You know, with those waves lines. It's like the air is moving, and I can see it like that, permanently. That is what I assume you all feel like, but my doctor said no, not many have this particular thing, but it's not unheard of either. She said it is one of the most debilitating symptoms one can have though. I mean, I guess that is the best way I can describe it. Now, throw in a balance/vertigo issue and that is my most annoying 24/7 issue. I think it's some form of central vertigo and it's very likely related to my central nervous system because of the issues associated with it. It's just, why? So I guess mold and lyme stuff could be the culprit, but I don't wanna miss anything.

It's the fact that these are not reactions - these feel like permanent symptoms that persist and never go away, or they are permanent until the mold/lyme is gone, at least. I hope they go someday. I hate feeling trapped like this. I cannot do anything except be in bed all of the time because of it. Not to mention, I am stuck in a moldy house, although I believe the mold is upstairs, but still, the toxins could be traveling. Or, it's not that at all and I was right all along. I hope that I am wrong. Otherwise, maybe its a Chiari malformation?

I feel like that is a good explanation of how some of my symptoms are though. They layer on top of my "general Lyme/Mold" stuff. I hope this makes sense. Does anyone else relate to this? I feel like I am damaged for life because of it.

Thanks for commenting, Canary63. It really helps when people say what they went through and are going through. How are you now? How many months/years did detox take you? I know for me it's likely going to be a bit. But that's the think, I have ap problem with not knowing what it actually is that I am facing.

I think I have a problem with the acceptance of this illness. I think it's because of my past misdiagnosis of having "the worst" already happen back in 2018, and thinking it was benzo withdrawal. It may have been, but it may not have been. I am trapped in this rotation of thinking "it is REALLY mold? It is REALLY LYME and other infections?" And this is because many of the people on this board (no offense at all, of course) do not have the kind of symptoms I do, and some of them are just dealing with aches and pains from time to time, which I am not saying is not hard - it's the fact that I can't relate as this for me is so mental for me, but with physical being on top of it. Not physical being the root like it is for many others, if that makes sense. It could very well be that there are people like me who are just reading these comments. I did that a lot, but now I do my best to speak up when I can, even when it's hard.

If this is the case and you see my post, please comment. I know it's hard. but people like you speaking up really help. I welcome anyone to explain your story as it will help me and so many others.

Now I just gotta find a place. If I could do that, it would help me so much. Maybe I can save for a decent used camper, but even those can be moldy. I guess I'll just have to have someone take a good look through it or something. I live in Vermont, so a tent right now would be an icehouse. If anyone has any other ideas, I am up for them. I know hospitals and homeless shelters are the worst when it comes to mold and infections so I definitively want to stay away from those.

I am quite sorry so sorry for my rambling. Awful morning and so my brain is just shot.

Ahhh Forest, I relate so much!! I’m so sorry! It is a huge comfort to hear others talk about this, though, and feel like I’m not crazy.

The first time I lived in mold was in college. I was in a very old building for about 8 months. I recall immediately experiencing MAJOR mental health symptoms; that’s the first time I experienced depersonalization, dévastons depression, and restricting anxiety. I also gained weight very quickly. I wasn’t informed enough to connect it to mold until it happened years later.

We moved into an apartment while my health was struggling but I was functional. My spouse had been experiencing that squeezing head pressure you mentioned (he has been for almost 5 years now) but was becoming more active from the gut protocol we were trying. Unfortunately, as winter came, we discovered the entire place was FULL of mold. It was growing on the walls. At that time, my Lyme came roaring out of hiding and hasn’t left.

The mold caused All those depressive symptoms, anxiety, rages, memory loss, major muscle atrophy, lack of circulation, tremors, balance problems, hyper chemical sensitivities, breathing problems, and horrible, horrible fatigue. It got to the point where we were crawling across the ground, just to try to get to the bathroom or eat some food. I had to completely quit my job due to lack of energy. This is when we realized how damaging mold was, so we moved in with family.
We got rid of a LOT of our things at that point and put EVERYTHING out in the sunshine (West coast) for at least two days to get some UV cleaning.
The family home was better but there was still mold in the bathroom. We got a little better but when mold is that bad, you can’t be around it at all.
Finally, a year and a half later, we got into a new living situation that was for SURE without mold.
We made the difficult decision to get rid of everything, like I mentioned before.

THAT is when things got way better and pretty quickly. I went from being able to work 2 hours a day (I work from home) to about 5-6. My spouse’s head pressure did receded a bit(it gets so much worse in mold).

So I’ve been out of mold for about a year now and I absolutely can attest to the benefits. I’m not losing hair or weight, my chemical sensitivity is a little better, I have more sustained energy, definitely way clearer brain power (I learned and started a brand new job). The air hunger is pretty much gone, some of my terrible pain is gone (neck and back).

(I’ll start a new message about the things that have helped during and after, right now).

Ok, the things that have helped a little during the moldy situation:

Hyperbaric oxygen therapy
Coffee enemas (twice a day)
Apple cider vinegar enemas (diluted)
Activated charcoal
Colloidal silver
Liver capsules
Constantly drinking vitamin c/lemon water
Low carb diet, NO sugar (not even from fruit)
Grass fed meat
No harsh chemical cleaning/personal hygiene products
Cold showers (if you can endure it)
Sauna (those little pop up ones do work ok)
Peppermint oil spray to freshen the air
Keeping windows open

After moving out:
Getting rid of ALL:
clothing, sheets, towels, pillows, bedding, rugs, etc
Any wood/artificial wood/plastic/cloth furniture
Books, papers, pictures, decor
Plastic bowls, cups, etc

Basically, we just kept as much glass and stainless steel as we could (we’ve slowly transitioned to buying those products as we can). I put everything we could outside in bags for as long as possible to get sunlight.

For remediation:
Quality probiotics
Nebulizer (this was SO important as mold spores love to sit in the sinus; we got one used and do a saline and peroxide blend)
Daily salt water, xylitol, and iodine nasal rinses
Colloidal silver nasal spray
Glutathione (it it was too intense to do it when in heavy mold)
Hyperbaric
Sauna
Low mold diet (this wasn’t long term but did help a lot)
Charcoal to bind toxins
Digestive enzymes, probiotics
Milk thistle for liver support
Charcoal foot soaks

If you can:
At home ozone machine (hugely HUGELY helpful)

For prevention:
A dehumidifier for the bathroom
Thin sponges to reduce any nasty growth
Metal cutting board to prevent things from growing in the cracks
Metal utensils (Walmart has them cheap)
Keeping the windows open as much as possible to keep the inside humidity low
Don’t buy secondhand stuff; mold spores from other persons homes can be too much for the immune system.

It’s SUPER important to go low and slow if you’ve been that affected. The body has so many toxins at this point, it’ll be overwhelming. I’ve only just now been able to start taking Biocidin with zeolite; it was way too strong before.

I am so sorry you are in this situation. Having written this out, my heart breaks to know you’re facing this. I totally know that the campers can easily have mold. Unfortunately that’s a big problem. And yes, shelters and even hotels have high rates of mold.

Are you able to move any time soon?

On the subject of the head pressure, our theory is that my spouse (who also has Lyme) has chronic sinus infections and inflammation that aren’t able to be fought, due to the taxed immune system.