My story so far

I got sick around two and a half years ago living in a moldy basement of a home and working outside in nature. My life took a real bad turn ever since. I had to quit living on my own, give up driving, basically abandon any social life. Brain fog, fatigue, weakness, pain to the point of where i couldn't and still can't do those things. Then other things started happening. It felt like something just took over my body all around top to bottom inside out. Stinging, burning, tingling sensations all through out my body especially my legs. So much head pain and sinus pressure. It literally felt/feels like layers of things wrapped around my head. As all of this got more and more I developed severe intrusive thoughts. I also developed POTS for some time but has subsided. I couldn't even wear some of my clothes or be on certain furniture without feeling like my body was in flames. There was a point where I even had to boil already bottled water to be able to handle it or I'd get pain rushed to my sinuses and brain. EMF/electricity bothered me and couldn't have electronic devices on for very long in my area. Also even lights and lamps affected me greatly when turned on. There was a period of time where I was living in my dark room with a nightlight on and my parents bringing me down meals. By this time already heard of MCAS but even though I probably have some degree of mast cell dysfunction I'm pretty sure it was my nervous system basically in fight or flight reacting to any new stimuli. So by this time Ive already heard of Dr. Nathan and his book Toxic and it seemed to really fit me. But even then I couldn't tolerate a lot the things he mentions at the smallest doses. I was using a small wash cloth as way to clean myself cause i couldn't stand the pressure of a shower. I have been all the way gluten/dairy/sugar for time already. After some cutting more food out, very slow and light vagus nerve stimulation, switching to more natural products, tapping, small amounts of Tox Ease GL at the time I was able get about 50% better from where I was at and too where I'm at right now. Im still largely housebound, can't drive, can't work, but am not as reactive. I can be around electronic devices, have lights on, go for walks at times, do more detox methods such as lymphatic brushing, smaller amounts of clay, Okra powder which i've seen on here. Thanks to the guy that recommended that. I can feel it working and things move but it's not causing any negative sensations or symptoms. If feels like its just going to work when i take some. A couple days ago I went out of the house to restaurants a couple of days within each other and a casino believe it or not. While I don't have the capacity/ability to do that often it was a step. I still have the intrusive thoughts but sometimes there less, some stinging sensations which vary in degree, and like im still full of mold and possibly lyme and co infections, brain fog/pain, fatigue, reactive in some environments/situations but I feel like I made progress and will continue to improve. I've never tested really for Lyme but being sick for this long and have all the symptoms i've had/have I'm sure I do with the Mold connection and all the possible exposures. Ive also had a real bad setback after doing the basic Buhner herbs but i'm bouncing back. Sorry for errors as mental clarity isn't the best as it probably is with many on here. I kind of do a variety of some self treating, A naturopath MD who has experience with Lyme but can tell hasn't had too much experience with someone as symptomatic as me but still very knowledgeable but i'm also going to start working with someone that may be able to be a little more help.

I actually have DNRS and am a believer in it but I just feel that my body got like this so I can also get better through the body as well without retraining right now if that makes sense. I work on things when I sense I can handle it. Like sometimes it seems like I can handle probiotics then I cant and back and forth. B vitamins were problem in the past. Last time I took a Magnesium capsule I felt a flood of unpleasant sensations. I've seen that magnesium can really push it out toxins and my body probably couldn't handle it. There were times where I could take Neuroprotek and times were I couldn't it would just it my sinuses. The ingredients I think while for Mast Cell but are also very high antioxidant as well. Just did an ERMI test and it came back good after we got an expert to remediate properly. I'm upstairs now and where going to do Hertsmi test up here and see. I notice I'm more reactive down there than where i'm at now. One of the reasons I think that is though is because I live ontop of a lake in our backyard so I think even though the room is considered safe just being down closer too all the moisture could play a part. Yeah it was really great feeling to get out more. Thanks for the support! I'll try to keep a reminder about some updates. My new practitioner is Mold and Lyme as it relates to Autism. I have an Asperger diagnoses so I think I will get more benefit with that aspect more in consideration as well.

Wow thats an amazing story. Thanks for sharing! I've never had mold but your story does sound like mold senstivity/MCS/MCAS. A lot of people seem to think these are all the same thing now. Anyway, good call on your nervous system being in fight/flight mode. I think DNRS (annie hopper)/ Amygdala Retraining (Ashok Gupta) would be super beneficial.

This is a GREAT article i'd recommend reading which goes into fight/flight overdrive and what to do about it. Posted it one other time on this forum and a few people commented how helpful it was.

https://www.holistichelp.net/limbic-system-retraining.html

In addition, I would recommend diet changes and going paleo for a few months in addition to bovine colostrum. I fully believe that leaky gut contributes to MCAS. The leakier the gut the more food sensitivities the more mast cells are activated.

dcd2103 thanks! Will check that article to see what I can pick up, seems to get really specific and in depth. I'm transitioning to a SCD diet now strictly after being gluten, dairy, sugar free largely for a few years. I think SCD is paleo friendly largely if I'm not mistaken.

Interesting. Do you mind elaborating a bit more on what you did before and what you do now w respect to clay/chlorella? Ie how much were you using before and how often vs now?

I’m trying to figure out how to detox metals, preferably naturally. Initially was gonna try low dose chelation a la Andy Cutler protocol, but I’ve decided to go the natural route after hearing a few people say they’re worse off w his method. He adamantly warns to stay clear of Chlorella however, so it’s interesting to me that you felt it was hurting you but now found a way to use it w results.

Post Edited (dcd2103) : 2/7/2020 3:14:15 PM (GMT-7)

Hope still,

What brand of okra powder do you use, and where do you get it? That’s one I haven’t used yet, although one of our other members has talked about it.

I avoided chlorella for a long time due to what I knew about Cutler. My mold/Lyme doctor always recommends it, though, so I bought a bag of tablets from Dr Rawls. At first I took 3 in one dose per day and later went to 5 and then tried maybe 10 in a day. It seemed to make my cognitive functioning worse, so I quit and cognitive got better.

Most recently (3 weeks ago), I started taking TUDCA Plus from Microbe Formulas, 1 capsule 2x day. I didn’t expect anything to change symptom wise, so I didn’t think too much about it until about 2 weeks in. By that time, I had noticed that I had been feeling better physically and was able to walk more, etc, and felt less inflammatory pain for about 2 weeks. After checking the timing, I found it coincided with starting TUDCA.

During the 2 week period of improvement, I had brief flares of various symptoms, but they resolved quickly and I still felt better overall. Just after the 2 weeks (last weekend), I had a bad flare of mold and chemical sensitivities where I was smelling mold toxins on some clothes and other things and was waking up with weird head and neck pressure. I was getting headaches and nausea and intestinal discomfort.

All that had me confused and in a tizzy for about 4-5 days. Then it passed and I had improvements again. Since TUDCA is supposed to increase bile flow, I’m thinking it helped clear my liver out some (making me feel better) and also increased backed up toxins getting released in the bile (causing flares in between improvements).

If I am right about this being from TUDCA, and I continue to experience the same ongoing, then TUDCA Plus may end up being a game changer for me. There are precious few things I have tried that really gave me any lasting improvements or help.