I'm Back/Tell Me How You've Been!

* Please excuse any errors in my typing. *

It's been awhile since I've been on. Truthfully, this site just became too much. I mean this in the most respectful way, but a lot of people on here like to play doctor or start a lot of problems, and whether I replied or ignored it, it got severely annoying, so I left. I had to choose between being alone or getting more stressed out because people just kept going at me.

I'd like to share some updates about my experience, if you wouldn't mind. I would love to hear what people think about my situation, just be kind and don't start telling me about where I am wrong in everything that I do. I would also love to hear from others about how things are going on there end.

So, I've learned a lot while I was away. I was right to trust my instincts, because there was a lot that made me say, "I knew it!" First off, my low results from RealTime labs indicate that I am not excreting the toxins and my doctor believes I am extremely toxic. I cannot tolerate a darn thing, and this is because my MCAS is so severe that I have to ip water slowly or else I will react. Mold is certainly the culprit of this, or Lyme/Co-infections, or likely both. It's coming from somewhere and should be treated like a layering symptom, upon other symptoms.

I am now living downstairs, still in the same home with mold, but away from it. I am doing better than before, but I still am pretty bad. I did have an inspector come, and we found that I have an ERMI score of 40, which is obviously not score that one would like to have. I contacted my landlord, he's not doing anything about it, but I am on a waitlist and maybe they can get me into something. Depends though, because now I am facing eviction by May simply because it's income-based housing and I don't have a roommate and well, you get the idea. Who would wanna live in this?

I am on a very limited diet now, down to just about 6 or 7 foods. I made all of the right moves because it helped a lot. I still have massive vertigo from time to time, but it's quite a bit less than before. The anxiety hits hard sometimes too but it just isn't as bad as it once was. Sometimes I wonder if this was a constant mast cell reaction due to my supplementation of things like Circumin (which causes DAO to plummet, leaving you with a ball of histamine in the body) and it took a couple of months to chill that flare out, or if it was the mold spores directly going into my system while upstairs. I am not sure. I stopped that supplement alongside all other supplements anyways. All I know is now I have to use a commode and do everyhting downstairs, which is perfectly fine I suppose, so long as I feel better than before. Don't get it twisted though, I still am having reactions and the only explaination is it's either mold downstairs/mcas reactions or this is just baseline, but something tells me it's not. My doctor certainly doesn't think it's baseline.

Speaking of doctors, I got a new one and she was trained by Dr. Neil Nathan. I am very thankful that I found her, or else I would be stuck with a doctor trying to push me through killing Lyme when I am as sensitive as I am. I am not sure where I'd be if I took those. Admittedly, I do wonder what I would feel like if I tried to take an antimicrobial or something that fights this stuff off. I wonder if the herx would be as bad as my actual symptoms at times, especially since I have felt the worse of the worst of this, especially some months back when I felt like I never knew where I was and thought I might die. I still feel that way from time to time, but that is also because now I have clostridium and salmonella. Also found SIBO, or what I may believe is SIFO, due to the high arabinose on my GPL OAT.

Oh yea, I ordered a bunch of this testing when I was without a doctor for a bit. It was a good call because every single test I had showed something wrong. High compliment c3a, c4a (which now are quite generic to me), high arabinose, high hydrogen, etc. I have a lot of other stuff going on too, but it feels like too much. I am just trying to keep one focus, and I believe a lot of this just has to do with the fact that the mold and infections really are messing wiht my system. Surely my TH1/TH2 is out of whack, I probably have high try-taste (maybe), it's just a lot. You learn to see that you have a lot going on and then you want to act on it, but you can't. So I am gonna go one step at a time.

Now I will ask you - what do you al think? What would you do in my situation? Once I moved downstairs, I went to work on the Gupta program. I am not 100% if it is working yet, but I have been at it for about a month or so. I am also using BrainTap as well. I have a variety of supplements that I plan to take little bits of (about 1/32nd of a dose at a time) and also think that I have some of the best information I can get. It's gotten to a point where my information has been of more benefit to others I know than myself, which is the sad truth. I hope that I can also help others out, but again, this turns into some kind of battle on here, so I will be hesitant in doing this, regardless of my medical background. Lastly, I wish you all the best in your healing and please, feel free to comment and say some kind words. It's all love over here!

Post Edited (Forest) : 2/1/2022 2:44:18 AM (GMT-7)

Forest I am so happy you are here!! I even created a post shortly after you had stopped posting here asking if anyone knew if you were going ok.

Omg I just saw your other post and I am in NH and have a brewer trained DR in Portsmouth and also used Madeline!!

I have learned a lot here but do not post often. I was positive last December for mold finding out I had been exposed at work daily for 10 years! I can hardly walk and have severe slurred speech so I can relate to your struggles

I am so glad you came back and hope others show the same.

Post Edited (sdarrah) : 2/1/2022 2:58:56 AM (GMT-7)

sdarrah said...
Forest I am so happy you are here!! I even created a post shortly after you had stopped posting here asking if anyone knew if you were going ok.

Omg I just saw your other post and I am on NH and have a brewer trained DR and also used Madeline!!

I have learned a lot here but do not post often. I was positive last December for mold finding out I had been exposed at work daily for 10 years! I can hardly walk and have severe slurred speech so I can relate to your struggles

I am so glad you came back and hope others show the same.

Hi sdarrah,

Nice to hear from you as well! That is good to hear about your having your connections, but I am terribly sorry to hear that you found mold. On the bright side, you know the causation of your symptoms and that is a good thing, so that way you can treat it. I am currently unable to use anything, but I am taking tiny little steps forward. The truth is, slower is faster in this game, and if it means using 1/32nd of the smallest dose available for something, I will.

Also, I completely get what it feels like to hardly be able to walk or talk. I now can talk mostly fine, so if you ever feel like it'll never get better, just know I am proof that it does! I will say that walking can be a challenge at times, but it's much better than before. I don't need a wheelchair these days, however, I do find myself extremely tired after being up over just a few minutes. I actually remember the day that Madeline was here in my home and she said it looked perfectly fine. Then we did the ERMI and then I was hit with the "you should probably get out of there as soon as you possibly can!" and so I am just waiting to find a place. I am also trying to keep busy, and I recommend that if you aren't already. I have been keeping a diary and can see this obvious isn't a linear process, but I can see things get better as time goes. I swear it's MCAS in the way of it all though!

I have mostly learned through reading in the literature and other's experiences, particularly with the sensitivities. I am trying to avoid mistakes others have made but also don't want to get caught up thinking I am like everyone else either. It can be tough. I am always here if you or anyone needs to talk. I will do my best to get back and try not to flee from the world! :p

sdarrah said...
Forest did you also have slurred speech? Has your fine motor skills, like writing been also effected?

Yes, they were - but got better once I got away from the mold and ate REALLY well since getting sway from the mold as much as I could. It took me quite a few months before I saw improvements though. For me, it messed up my vision for a bit, but that also improved, but that also goes in and out every so often. Again, it does improve with time. I just want to let you know. Of course, I am good at this time, so give me a couple of days and I will be on here and screaming OH GOD WHY IS IT SO BAD!? Lol but people just have to remind me that healing happens. Sometimes I feel like it isn't mold and it's always something else, but I have to remember that the diagnosis fits. I hope that supplementation works for me though. I don't know if you are using anything (meds or supps) or if anything noticeably helps you, or if you have bad MCAS or anything like that, but I can tell you that nothing really made me feel any different that I recall, which is a shame.

Forest this forum allows us to know we are not alone and can usually find someone with similar symptoms but if nothing else we can identify and not compare.

What symptoms are related to your MCAS?

It has taken me a year of binders to work on the system mold and 4 real-time follow up test to get the level of toxicity down enough to just recently after an OAT test start treatment with antifungal spray for nasal colonization and diflucan for candida and it’s been just over a month of that plus many supplements.

Deep_sleep said...
I love Neil Nathan so it's good that you have somebody that was trained by him. He recommended BrainTap for the vagus nerve so I wonder what your experience is of that? Do you use it without the headset?

Yes, Neil Nathan has been of great help to me and apparently talks with my practitioner often. I am fortunate enough to get visits covered by insurance as well, which is a blessing considering I am beyond broke right now. Like, deeply in the negative.

BrainTap has been great. When I am in a flare, I don't notice a difference. It's one of those things (like Gupta/DNRS) where it doesn't work at the time you use it. It's one of those things that slowly gets better with time. Sometimes I will play session of it when I am aware of it, other times I will use it in the background. I think it's helpful to help break the background noise and tinnitus as well. I think in the early days for most who are healing, this may not really feel like it's helping, as it ididn't help me, but once I got away from the mold/toxic exposure, I could see changes. Same with Gupta. On another post, in my personal opinion (and I will stand by this), there isn't a use for these things if you are in mold. I personally don't know others who have said they felt better with these limbic/vagal retraining systems with being in toxicity. It's sort of like trying to change a tire with the wheel moving. Yeah, it might work, but it's extremely tough to do it and it might actually hurt you due to that visual/auditory sensitivity.

sdarrah said...
Forest this forum allows us to know we are not alone and can usually find someone with similar symptoms but if nothing else we can identify and not compare.

What symptoms are related to your MCAS?

It has taken me a year of binders to work on the system mold and 4 real-time follow up test to get the level of toxicity down enough to just recently after an OAT test start treatment with antifungal spray for nasal colonization and diflucan for candida and it’s been just over a month of that plus many supplements.

I mean, I think we'd all like to think that certain symptoms come from one thing and some from another, but I am not convinced we can tell. This is just my opinion, but I believe a lot of the symptoms we have stem from our genes and how our autoimmune response affects us, through inflammation and so on.

With that said, I would just sit all of my symptoms because I personally cannot tell. My symptoms are/were:

Persistent vertigo/dizziness (MdDS) ("Like walking on a trampoline in the back of a moving pickup truck going over a bunch of bumps”)
Anxiety/Panic Attacks
Malaise/General "Sickness"
Dysautonomia (Originally POTS)
Temperate changes
Hot Flashes
Shakiness
Chills
Dry mouth
Swollen tongue
Rashes/Red Spots
Hunger
Gustatory Rhinitis
Can’t Eat Without Reaction
Forgetfulness
Depression
Rapid thoughts (OCD)
Musical Ear Syndrome
Racing heartbeat
Palpitations
Numbness
Tingling
Tightness
Pain (Everywhere, always, especially in nose and face)
Headaches/Migraines
Stuffy Nose/Sinus Pressure
Nosebleeds
Head Pressure (Constant)
Myopia (Right Eye)
Disequilibrium
Light Sensitivity/Vivid Vision
Tinnitus
Chronic Fatigue
CNS Overstimulation
Shallow/Heavy Breathing/Air Hunger
Ear Fullness (Checked For Infection)
Vibrating Eyes
Seeing Lines/Spots In Eyes
Confusion

These days (and right now), I am having anxiety, tinnitus, my vision is "off" but I don't know how to explain it. Lots of pain, but this is likely because my oxalic acid is up in the hundreds, or this is what my doctor thinks and that would make sense. Runny nose, um... a bit hard to think. Huge headaches, like, from hell when I wake up at times. They sometimes fade, sometimes last for days. This could be a bunch of lyme/co-infection stuff. My neuropsychiatric stuff may be a lot of Bartonella too, which my first lyme doc though I DEFINITELY don't have, but my new doc says you DEFINITELY DO. Again, I agree, because I just look look that guy with a bunch of crap. How about you?

Also, I have not even tired binders yet. Of course, I am just getting started. Just trying to get myself together. Definitely open to advice for those who are super sensitive. It's true, we have each other in this!

I am also sorry to hear about your mitochondrial damage. I really hope the ATP360 helps you out!

Forest said...

BrainTap has been great. When I am in a flare, I don't notice a difference. It's one of those things (like Gupta/DNRS) where it doesn't work at the time you use it. It's one of those things that slowly gets better with time. Sometimes I will play session of it when I am aware of it, other times I will use it in the background. I think it's helpful to help break the background noise and tinnitus as well. I think in the early days for most who are healing, this may not really feel like it's helping, as it ididn't help me, but once I got away from the mold/toxic exposure, I could see changes. Same with Gupta. On another post, in my personal opinion (and I will stand by this), there isn't a use for these things if you are in mold. I personally don't know others who have said they felt better with these limbic/vagal retraining systems with being in toxicity. It's sort of like trying to change a tire with the wheel moving. Yeah, it might work, but it's extremely tough to do it and it might actually hurt you due to that visual/auditory sensitivity.

That sounds good. I just downloaded it and started a trial so will give a try later today. I do DNRS instead of Gupta and it has been of great help for me.

Forest, it is good to see you're doing better. I agree, I have seen it on this board and another lyme board forum I'm on that some members can be very preachy, intrusive and obsessed that whatever worked for them will with you and that you MUST do things there way and they know it all. Take them with a grain of salt. Lyme is truly is very complex disease. Not a one size fits all. Sadly it seems for some, lyme has consumed their lives, instead of them having Lyme, lyme has them. I refuse to live like that! So its good to take a break from these boards now and then if it's too much. Your mental health is important.