I am Afraid I Don't Have Much Time Left

First off, I'm sorry you're struggling so much. You're not alone. It ****ing sucks and sounds like you're in a really intolerable place.

My first thought - are you doing anything to treat your MCAS? 6 months ago I could barely leave the house because of pain/reactivity. Going up the stairs, walking around the block, the process of digesting, all flared my MCAS. I got on cromolyn sodium, and I am leaps and bounds better than I was. Not anywhere close to healthy, but my life is more tolerable and I don't feel like killing myself every day. Took 6 months to get to a full dose but I can tolerate more foods, I can even go to a couple of my classes at university without constantly thinking about my pain. All with only cromolyn and quercetin, because I can't tolerate h1/h2 antihistamines so this has done a ton on its own. Just a thought on where to start! I think there is a lot of room for improvement if you focus on stabilizing those mast cells. But of course I'm not your doctor and I don't know the full picture.

When you have a flare, do you feel like you go into psychosis like I do? Do you also feel like you are going to black out and die? This is how it feels for me. Regardless of what I do or take, it's like this.

Do you (or anyone else) feel like the person on their death bed in movies where they pull the plug and that person passes? That is what I legitimately look like. Like, it's at that point where I do look like this. Skin and bones, about to die. I wish I could just go outside, but if I am on my feet my heart goes crazy again, but then again it's not like POTS either.

As for pain, I have had chronic pain since 2011. I've got used to the pain, but for me, I personally feel that is the least of my problems. I am not saying pain isn't hard (especially with digestive pain, I totally get that myself!), but I am more worried about my vision, balance and dizziness and the way my brain operates. Like, I feel like I am always on an acid trip... doesn't everyone else? Or some people, at least? Like, I worry about cranial nerve damage, particularly in the vestibular region. It would make sense that nearly all of those nerves are affected, but I do have function still, it just seems... slower. I can tell things are very wrong. I worry that I am so damaged that I cannot go back. :/

As for the treatment you are describing, I understand. Most doctors should be starting with something other than quercetin in my opinion, considering it is a form of a salicylate and due to the way it works, being the type of flavonoid it is. From my understanding, you want to start with a tiny pinch of something, but I feel absolutely no difference in anything I take or so. Italways has me second guessing what is actually going on. Also makes me wonder if I have this but also other illnesses in the way, so it's preventing me from getting rid of the other, you know?

So I’m not sure what your relationships with your friend and your family are like but would they let you in if you showed up homeless on their doorstep?

Sometimes (obviously not all the time) family and friends are more understanding when they actually see you suffering in front of them all the time. Then again, there can be a weird sort of I live i the same house but refuse to accept you are ill because every time you have a symptom I deny you have, I just leave the room and pretend it didn’t happen.

Often if you apply for Medicaid they let you apply for all the other things too like disability, housing heat, snap, etc. they’ll even let you do it over the phone so you don’t have to type.

I felt it would be good to write a list of my symptoms now that are occurring frequently. Something that is less than my original lists I have made in the past. I just feel like posting it might be good, especially for people who red this in the future. I hope I can better figure this out so others don't have to go through it for as long as I have. All of these symptoms are random. No triggers that I am noticing.

Vertigo/Dizziness in eyes that makes me feel like my brain isn’t working fast enough to catch up
Disequilibrium that creates “wobbling/boaty” feeling
Pain inside of my left ear
Top of scalp is sensitive and feels like pressure has built up over time/touching makes me feel pressure in top of mouth
Pressure around roof of mouth, but mostly above top row of teeth/gums
Feels like my nerves are tightened through various areas in my body
Random periods of hot/cold
Random bouts of anxiety, not caused by any triggers anymore (they sued to be)
Light sensitivity that makes vision way worse
I feel worse when I first wake up, and that is usually around 9 PM as of lately
Random bouts of air hunger
Random bouts of depression for no reason
Inner tremors happen, but rarely now
Hypersensitivity

I sm uite tired so I hope I got that all right. I didn't check it over. I am that careless at the moment.

Also, does anyone also feel better being really tired? I feel betetr when I am sleep deprived in many ways, and I think this is because I am so revved up when I wake up that I rather have absolutely no energy so I feel more normal like I was at one point. If anyone relates to that (or anything) let me know. If oyu have in the past, you can say it again. My memory is gone these days, so I probably hardly remember.

I’m not sure what’s involved with this, but can you rent or buy a trailer instead? I would think that’s cheaper than an apartment and better than a tent.

I’m not sure how you feel about church, but you could try finding a friendly one and asking the deacons for help.

Post Edited (Bailey) : 2/4/2022 3:07:43 PM (GMT-7)

Thank you all for being so kind and understanding. This means a lot. Support is all I've got right now.

Currently, I am speaking with my doctor about the possibility of an ear infection that has been possibly been a problem since the middle of last year. One doctor said my left eardrum was dull, and I am not sure if it's still there. She said I should get it checked out. My thing is, I am terrified to take antibiotics. I have no idea if I would actually react, but I just remmed taking them in 2018 and being fine after a bunch of this kind of stuff. Sometimes I wonder if this has just been something going on in the background that has spread and making me this way.

Another thing that I am doing is trying to sleep a lot. Just trying to see if forcing more sleep would work for me. I got 8 hours around 2 PM-ish and 12 AM-ish. Something like that, somewhere in there. I think I woke up and went back to bed. I do track this stuff with an Oura ring and it's one of the only pieces of tech I use considering it is very low in EMF especially when put into airplane mode.

Speaking of support, I am happy that my doctor is supportive. Just sucks when they don't entirely know what to do either. I understand though, this stuff is complicated. Then again, I wonder if it's really just as easy as a couple weeks of an antibiotic to get rid of some of the frontline issues. We know I have high Clostridium and we know I have Salmonella. I likely have other issues as well. It could be that, and this is interfering with the way my body is balancing everything. Then there is the worry that it'll get trapped up in my system and I need to detox. Glucuronidation is one of the most important processes for most toxins, especially with mold, but mycotoxins hinder this process and that is probably a big piece of the problem. For what I know it's 1. MCAS - stabilize the mast cells / 2. Detox mold with specific binders (mold generally is the reason for MCAS, sometimes lyme/co-infections, but usually mold is the biggest reason) / 3 Once that is set, let the infections go on their own or use what you need to get rid of MARCoNS, or anything hanging around for mold with combining the right gram positive/negative binders, making sure to take them apart so they work properly to bind the toxins and then / 4 use antibiotics if neccesary to rid the body of lyme/co-infections, which may go away mostly on their own, according to some. Of course, if you are like me and like 4/5ths of the US, you probably have some form of a virus, such as HSV1 or EBV, which is the norm these days, and this may further inhibit the ability to clear some of these issues on your own. Therefore, it may be best to treat regardless.

However, in my case, is this what we do? What if my top layer is an ear infection alongside that clostridium and salmonella. We know I have 2 out of 3, and my left ear is dull with pain and long-term vertigo. There's clinical representation that drives reason to use antibiotics, especially since bacteria is usually a longer lasting infection than a viral one, in some cases such as ear infection. It varies case by case and is dependent on the driver of the infection. I have wondered if it's just my immune system attacking itself, or there actually something there doing this to me, so it is double the suffering.

I wonder if I should just get a script and alongside it (with serration in the timing, of course) take some charcoal or something. I don't know. This is very complex having all of this at once.

Traveler - So, the whole thing is, I guess if I detox, I will feel worse. I have yet to try charcoal or clay or anything really. Well, I did use chlorella, but that was mixed into a crap ton of other things and my doctor insisted on continuing to take it, when I just felt like it was a bad idea. So I stopped on my own. Glad I did listen to my gut, because it helped a lot. I then moved downstairs and have been mostly better, but sometimes I get hit with such major episodes of symptoms. Makes me wonder what it really is because it seems random to be completely honest. Yes, I react to food, but sometimes I am just sitting there and hit with major symptoms. It's weird.

Bailey - I could try and get a trailer or something. That would actually be great honestly, but I feel like getting a place idk that would somehow be moldy with my luck. I would love something like that though. The smaller the place, the better in my opinion. Not only is it easier to get around in, but it means cleaning and maintaining is much easier. I am actually messaging various places now to see what I can get, if anything. I just don't feel very confident in it. I always get turned down and have all of my life. As for church, I have never been the church type, but it's kind of been on my mind, which is not like me. Who knows, maybe it's a sign. I also hate to reach out and ask for help. It's not like me. I am usually the one who helps. Always felt like I didn't deserve it unless I did something for it, I suppose.

morningstars - Yes, this is quite similar to me. I am so sorry for your suffering, but so glad to hear of the changes. I want to hear more of this from people, I really do. I think a lot of my issues have to do with not knowing what to do, and I always like to know what to do. I try a lot of these things with optimism, but then it turns to fear and issues. If only I had another person around that cared. Someone to help me get through it, I would be able to talk my way through it and push. I really think that would change the game around for me.

So I do have a b ucnh of stuff that I have yet to start on. Here is a list of various things used for MCAS. It's good to get brands that have nearly no other ingredients too, but you and others may already know this. Just stating this incase others read this in hopes of some MCAS help.

DAO (generally taken 15 minutes before a meal)
Perilla seed extract
Mirica (generally because of the Luteolin)
Resveratrol ( this can cause a herx for some, be careful)
Vitamin A
Vitamin D
Zinc
Quercetin (generally used first, but some experienced MCAS docs use this later on)
etc.

My problem is that I a terrified to try any of these. I mostly fear that it's not even MCAS and something else, just like in the past with other things, it was always something else. I wonder what the hell is actually happening with me and so I feel like, "What's the point". That is where I am sort of stuck. I hate it. But congrats on the cromolyn! I have considered this as well, but as a last resort after I try these other things. I also might consider using compounded oral ketotifen.

Oh and I know of Bartonella Babe. She reminds me of me, because I am a goofy nerd. Not to mention we had the same thing happen with SIBO and clostridium, except she has used antibiotics and I have not. It's why I keep questioning it. Like, do I do it? What would happen? I feel like this is unsolved and is a complete mystery to me. Especially since I seem like a prime candidate for someone who needs them.

As for what she does, I think it's wonderful. Her personality is great. Nothing like being serious and then within the same video making a joke of our pain, it's what we've got to do to get through after all. That's my kind of style.

To everyone - let me know how you are doing. What positives have you found from your antibiotics and other supportive medications/supplements. I just think my brain works differently, maybe. So I like to hear everything I can to help convince myself. I want to get there so bad, and I am willing to be patient. I think I just need to get a grip on relationships and gain mroe of a solid foundation. You all are helping keep me alive and I just want to say thank you. I am glad I can come here without any worries now.

Post Edited (Forest) : 2/5/2022 2:18:23 AM (GMT-7)

lymegirly - I have a hard time saying when I got sick from Lyme/co-infections. I don't know if it was back in 2008, 2011, 2014, 207, 2018, 2020, or 2021. All that I know is that I have dealt with sickness most all of my life. I have been through so many different kinds of "sick", and I really can't tell the names apart anymore. I don't know if what I am dealign with is even this stuff I am looking at, or something less, or even ore severe. It's hard to know. To me, what I feel like makes me questions wanting to live quite honestly. Not that I am gonna end it, but I wonder, "How could a person live this way not being able to ever feel like they are on the ground and always stuck on a theme park ride?" or another way to explain it is that I always feel like I am moving in a car and taking turns, but always turning. Out of every symptom I have, this is the absolute worst and I just can't shut up about it because it's hell on earth. I would trade it for anything else. The fact that my eyes don't match with my brain, it feels like I am stuck in a dream. It's not even like that, it's worse. I can tell something is truly wrong and it worries me that if I don't do something soon it will only get worse.

With that said, is this where I maybe should start on something? Yes, I am sensitive, but I wonder about the sensitivities. I have no idea if it's the supplements or medications, or if it's actually me having such an awful infection that it makes it look bad, like MCAS. I mean I could have that too, and likely do, but is's insanely confusing. I really can't take this anymore. I am sick of this earthquake moving underneath me, it just DOES NOT STOPPPP.

Any advice form you or anyone else? I am willing to listen. I was gonna see an ENT doctor maybe but I don't know, I feel like they will miss it like everyone else does and just give me vestibular therapy. Yeah, it might be somewhat helpful in some ways but I have this feeling deep inside that it actually won't. I feel like it's an infection and it's causing a swollen vestibular nerve, and likely affecting other cranial nerves. Maybe I need a short course of antibiotics and the I can get on a regimen that can handle the other stuff, or I can take bits of activated charcoal with some azithromycin/doxycycline. I am thinking ear infection, but maybe we need to look deeper. I don't know anymore. Literally feeling nuts. Some days I can get it together but right now, no. I hate replying when I feel like this but it's how I actually feel.

I mean, I DO have clostridium in large amounts and salmonella. I DO have active Babesia that has ever once been treated in any way. It's not like I got treated for it years ago and it came back, no. This is a completely random thing thqat has been there since... I have no idea. And then the mold, I don't know either. It's a mess. I have been sick long before this but it was "walking sickness", where I just felt like crap but did things anyways. This is impossible. If there were a fire where I live, I don't know how I would even get outside, I am truly disabled beyond disabled.

Now, let's say I do take antibiotics. How do I go about it. Do I just take them alone, or should I be on a binder maybe some time in advance (and also taken before/after the antibiotics when I am using both) or should I ride it out? I mean, I am gonna take everything everyone tells me with a grain of salt, but I am listening. It seems like everyone on here is using anitiboitcs and various supplements. I don't know many others who are like me and use 0. I use nothing. When I would take bath, I got panic attacks. I once put my feet into an epsom salt bth and panic attacked with very little epsom salt in it. I am fragile. Then again, what if it's my head playing games? Ugh, I feel like I am going crazy.

Thank you for that response by the way and I am very sorry to hear about all of that but it is so helpful. It pushes me to want to just say "screw it" and get a script. My doctor listens, I just hope we can get something going.

P.S. With everything I said, I don't even 100% know what a herx feels like. I feel like I have been stuck in one since May 2021 though. Everything is intense and just recently is when I started getting more days of things being easier, nervous system-wise, which is a good thing. Anyways, yes, thank you again. Sorry, hard to think right now lol.

I just have to say one more thing - I feel like a herx for many is like the flu, yes? I don't get this. I don't really feel like I have the flu, but more like constant illness, especially neurologically. It's all central nervous system for me, or at least it feels like it. I mean, I guess my autoimmunity is the cause of the CNS symptoms, but still.

So, what is a herx like? Is it just the symptoms worsening? I personally already feel as bad as I can imagine I could ever feel. I mean, I guess you just know when you feel like that. That "this is about as close as it gets" thing. It took until ,my adult years to feel that for sure though.

If that is it, I would just stay on antibiotics anyways. My life is nothing as it is. I do nothing, have no friends, and sit in the dark almost 24/7. Too bad we can't take pics, I would show you what it looks like. No use in lights since they make everything worse. It would really be something if antibiotics could wipe the bacteria that's causing me hell and then I felt better. Oh man, I would never take life for granted ever again.

i like lymegirl and you was in bad bad shape . the vertigo is not something one can get used to . licorice helped blood flow to inner ear and seemed to help pots and balance until i could get pathogens off of nerves . after a bad sulfa experience with abx i was deathly afraid of abx so i chose bvt . based on eva sapi s work it was the only substance on the earth proven to decimate borrelia biofilm(more than 3 abx put together) ...all the inflammation had created a lot of fibrigen and was impeding blood flow . lumbrokinase on an empty and some pycogenol and baby asprin would let me start to find practioners . the amethyst mat , plasma rife and intravenous nutrients helped get strength up to treat . if your life is in danger , do what need be done. fwiw my vertigo went away after a few month on bvt and zhangs bart combo...dont give up ,keep digging, u will find your path thru this dark dark forest !

“ I feel like a herx for many is like the flu, yes? I don't get this. I don't really feel like I have the flu, but more like constant illness, especially neurologically. It's all central nervous system for me, or at least it feels like it. I mean, I guess my autoimmunity is the cause of the CNS symptoms, but still.

So, what is a herx like? Is it just the symptoms worsening? I personally already feel as bad as I can imagine I could ever feel. I mean, I guess you just know when you feel like that. That "this is about as close as it gets" thing. It took until ,my adult years to feel that for sure though.“

My herxes aren’t like the flu either.
I sometimes do get an increase in my current symptoms.
I also had one very bad herx when I had a very high fever and my body hurt all over, arms were jerking, scalp was sore to touch.