I'm Feeling Low, Need Advice An Encouragement

Hi everyone,

I just feel low right now. Sometimes, I wonder if what I have is right. Is it just Babesia and Mold? Is it something further than the possible MCAS attached to it? My symptoms have been maddening lately. I know, I have yet to be untreated but I am incredibly scared to start. My symptoms are so bad and I simply can't figure out a way to stabilize The anxiety and other issues are way too much. I feel like my body is on 10/10 about 9/10ths of the time and it will go down to an 8/10 if I am lucky at random. I cannot eat because every bite I take ramps all of my symptoms up.

I feel really stuck. I told my doctor what's up and he didn't really give me an answer. As a matter of fact, we had a 30-minute appointment but it was only 20 minutes for some reason today. I feel like lately, I am not getting much out of my appointments. I am told to kill this infection and it'll get better, but then I feel like i am going crazy when I do something as simple as eating food. How am I supposed to do all of this when I already feel maxed out all of the time? The plan is to try quercetin tonight, but it freaks me out too. Every tiny thing freaks me out. A year ago, I was outside all of the time and exercising. Yeah, I had some normal depression and anxiety here and there, but this is another hell. I just wish I knew what to do...

I have pretty much no family or friends and the little help I do have is rare. I don't know where to turn. I did recently get prescribed benzos as well, and I know they can be helpful but that is my absolute last resort. I want these supplements to do their thing so my body can correct itself. I eat extremely well, and I was doing some exercise even when my heart was stuck up at 150 BPM for a month there when this started back in May (this year). A lot of that has passed but now it seems like I am stuck on repeat. I get no breaks. I think one of the worst things is that sometimes it can be hard to connect to others, even on here. I am bedridden and finding it hard to do literally anything. I feel like I am losing it and I feel like I am dying, but treating it means possible insanity. Or maybe I am going overboard about it...

Honestly, could I get some encouragement? What do you all think? I feel like I am so stuck.

I want to let it be clear that I went through this same kind of thing back in 2018, but it all went away after 14 months. Not sure if I accidentally treated it with the use of CBD or it was mold and just died out or what happened. I have no idea. I will say that it was quite similar, at least. Well, the drugs didn't work. I used benzos and they didn't touch me and I used CBD but it did nothing. I only kept taking it for the neuroprotective effects. My symptoms were always bad no matter what I did. So it makes me wonder what's next. So yeah, I am scared about this. Nothing touches it. Sometimes I wonder what in the hell is actually going on. Maybe it's just flareups that don't quit? I would assume maybe it's just massive chronic inflammation and it's stuck. I don't even know if it's even MCAS. It all confuses me. Sometimes I think I messed up my brain when I was younger or something, I'm not entirely sure. Maybe I am just overthinking it all. I mean, I spent a long time without any problems, over 2.5 years. I guess I let my immune/CNS down and the guard came off.

My thing here is, I am not a fan of a lot of these drugs. People might not agree with this, but I actually dislike SSRIs more than I dislike benzos. This is because of how they take longer to work. Serotonin doesn't actually do much for "depression" or "Anxiety", but that is another conversation for later. However, Benzos work by attaching to the GABA receptor and while they don't give GABA, they open up the receptor site, and when removed, they actually can affect the receptor site long term, and this is the main idea of how benzo withdrawal works. It is definitely not the only thing, but that is just a piece of it. Anyways, this makes it so all hell breaks loose and I have wondered if that is part of my issue. However, I got well and it's been years since that happened, so it only makes sense that it's actually this whole thing, especially with positive tests that prove I am very positive for an active Babesia infection as well as Black Mold and Gilotoxin. With that said, I am trying to make sense of it all. Then I have HLA-B27, but that is just a precursor that says "this is a gene, and it's likely to influence this ____" and so everything is worse for me.

So yeah, talking out loud, I am a mess. I may have to give DNRS and IVIG a try. I am curious what IVIG would do for me, and curious how bad the herx may be if any. I gotta stop thinking about that stuff though. Chances are I am just always herxing. I mean, that is what I have been told. I have just been stuck in a rotating herx that hasn't stopped for 5+ months. Just gotta get my body out of it. I guess maybe treating it is key.

Can I do it without treatments for anxiety though? Am I just overthinking this? Did you both have anxiety through this and if so - how did you manage and when did things get better? I appreciate the responses!

Sorry you’re suffering so much!

Many of us can relate to what you’re experiencing.

I was a MESS when Lyme hit me - the one year undiagnosed - I thought I was losing my mind - anxiety - waking up during the night (several times) in a panic , gasping for air.
Crying fits during the day… horrific times

I treated quite aggressively and here I am (several years later) almost symptom free - and back to working again - feeling like I am in the land of the living again.

I was fortunate to have supportive husband, and my close friends also supported me.

IVIG doesn’t cause a herx. It would shut down the inflammatory response of your MCAS and dampen your herxes. Again, super hard to get, gotta find the right dr. A months supply is anywhere from $10-20k. I’ve got 70g sitting in my fridge I wish I could give someone, but it’s against the law. I unfortunately get a super rare side effect called serum sickness, but this isn’t a concern for 99.9% of the population. Biggest side effect is headaches which normally go away after the 3rd infusion.

Post Edited (dcd2103) : 10/20/2021 6:28:51 AM (GMT-6)

I didn’t know that about ivig that’s really informative I just knew mcas docs sometimes prescribe it. You probably need to see an mcas doctor to get it. They’re kind of rare. In the northeast the famous ones are dr Afrin who works with Tania Dempsey and dr maitland. Mideast coast I know here a guy affiliated with hopkins who people on another forum say treats mcas and said he uses ivig on his website. His name is Henry Li and he’s in Maryland. The others I listed are in New York.

Also keep in mind juicing/blending foods can make them harder to tolerate even though it also provides more nutritional benefit. Also keep in mind that apigen is a phytoestrogen, and increases in estrogen/phytoestrogen can lead to more histamine. Obviously apigen helps other things so it’s a trade off.

I tried taurine yesterday and it seemed to help my gaba/glutamate issues.

I think there was also a dr Y in New York, maybe a neurologist associated with some university who treated Lyme and loved to use ivig on everyone. I heard he charged a lot of money.

Post Edited (Bailey) : 10/20/2021 6:35:16 AM (GMT-6)

The two biggest names that people go to for IVIG on the East coast are Dr David Younger (literally “the IVIG guy”) and Dr Elena Frid (hear she’s all about the $ now tho and you have to do it in her office)

Younger is expensive for his consultation fees (like $3-8k all in depending on which tests he orders), but offers the best chance of getting IVIG of any dr in the country as he uses it extensively. His book The Autoimmune Brain is an interesting read.

The two things that gave me the biggest resutls was seeing a biological dentist-cleaning the metal and root canals out and treating parasites. You may consider both