Best Treatment For Extremely Sensitive Patients

As the title states, just wondering. I am here always trying to gain knowledge and info and I am always constantly asking questions. I know of various types of LLMDs, I am trying to find a possible new one right now, as I am in Vermont. I am also on the VT/NH border, and it's pretty small around here so most know that it's like one big state when combined. I am just trying to see the people out there. Looking for both local and far, whatever I can get to get the best care. It's a tough situation, but some of these guys have payment plans and even allow insurance to cover it.

I just feel sort of like... an experiment lately. My docs are paid for by insurance (thankfully), but something seems wrong about just killing Babesia, especially since my doc only wanted to use Milk Thistle alongside of it. I just feel like that would torture me. Use Vitamin C and DAO then hop into the Babesia when I am ready? Hmm, just doesn't feel right. We have hardly done any tests to determine where I am at either. There are so many things that I would like to do and know before starting. I can't even figure out the words I would say to him to make a convincing argument either, without sounding like I'm conceited or a know-it-all. I mean, what do you do when you're in a situation like this? I know from experience jumping into this stuff with a sensitive person like me - Mr. MCAS, CIRS/Mold, Lyme/Babesia, clear GABA/Glutamate dysfunction, etc. = possible death if I do anymore to my body without the proper support first.

I can only hope lots of readers will come by this post and soak up the info from it. I hope that one day I can repay the favor as I love helping people and would love to be on the other end of it all. Let me know of people your thoughts, what you'd do such as Lyme before mold or vice versa, when to use a certain 'something' like a supplement when having a certain 'thing' happen, etc. I have been sucking up SO much advice and knowledge over the last couple of months on this, and from the forums. I can't thank you all enough. I do have some names that were mentioned before, and it's okay to list them again (as I may have forgotten to write it down) and to also give me your email. Whatever works. I am in a positive mood to blast this thing, but slowly. I am very open minded. Okay, without further ado...

“ We have hardly done any tests to determine where I am at either. “

Not all llmds do use testing to determine where you’re at.

Mine doesn’t.
He goes by symptoms, reactions to the treatments, symptom resolution …………

I ordered tests for myself tonight. I am also in contact with another practitioner that has been trained by Neil Nathan. I am doing the work I need in advance, as I don't want to waste my time. I know deep down that I am not a usual case, and I was right when I woke up to an email from this particular practitioner stating that she wants to see me as soon as possible and is trying to make time for me based on what I've reported. It feels good to go from squat to more of a priority. I hope this continues to be the case.

For now, I have only Real Time Labs Mycotoxin testing as well as IGenX testing, which doesn't tell me much. So I ordered a Great Plains test to further understand the other side of what I may not be seeing, alongside a CIRS test panel, and I even threw in VIP. I am a bit worried about the c4a, as it's said that only National Jewish properly handles c4a, but I am not sure of this any longer as it's been a few years since that's been said. I do plan on testing all of my hormones, particularly cortisol with a 4 point cortisol. I really do want to get a clear picture of what I am dealing with. Different tests could really help bring a better pathway to my treatment plan. I have been doing this for too many freaking years and it's time to get moving forward.

Due to my "low levels" of mycotoxins from Real Time, that was concerning as it may actually mean I have extremely high levels and I am not excreting much of it at all. I have been exposed to a loooooooot of toxins over my lifetime, and I suppose it was all covered up by lots of medication, which further damaged me. I'm fairly young, but I suppose age isn't always the case in this. I was quite young when I started to see changes. I now know what I know, and I am only growing more each and every day. I hope that I can live a life of true happiness and help others as time moves forward.

Also, thanks dcd2103, but I do not think I'd be able to afford IVIG, unless that were able to be paid for by insurance, which I am almost certain it's not. I will keep him in mind though. Always good to have more names.

As for my back, it always hurts, but pain is the smallest of my worries. My biggest problem is my brain being stuck on speed mode. I want you to imagine feeling like you are going 100 miles per hour (or about 160 in Kilometers per hour for those outside of the US) and you are trying to stand on a trampoline while the pickup truck you are in is constantly moving, going that speed. Never stopping. That is how I feel 24/7. That is how it feels to walk with the dizziness and vertigo that I have. It is hell. That would be my largest concern, next to the anxiety. If both of those were gone, I could deal with the super numb arms and legs, constantly disturbing vision, etc. I suppose everyone has their worst that they pick out, but that's mine. I personally have dealt with pain for so many years, I've gotten used to it. I suppose the AS is flaring, but I can't really ever tell the difference with all of this other stuff going on. I do have quite a few docs that I see (14 actually) and they just tell me that they dysautonomia is caused by the infections, which I completely agree with. Many of these things are not separate. They come from changes within the brain that affect various systems within the body, which you probably already know. I am just saying it's easy to forget that. It's just important to remember, treating HPA Acid Dysfunction won't do anything if you don't treat the underlying problem, which is infection. My mission is to do mold (due to MCAS) and then go after Lyme/Babesia, and/or other various infections. I would love to tackle those but afraid I wouldn't make it far if I hit those first with my sensitivities I currently have. I hope this new doc I see can help me put together something that works. Crossing my fingers that I don't have total mold colonization. if so, it better be small!

No one can afford IVIG, that’s why I was giving you the name of a dr who supports its use and is willing to work with insurance (albeit there are more aggressive ones like dr Y in nyc, but at least dr Farhad is close to you and people travel from all over the country to see him). He’s also one of the foremost specialists in the country in what you claim is your chief complaint. Yet you brush off the suggestion lol

It sounds like you have autoimmune neuropathy as well. The dizzy/vertigo feeling isn’t uncommon in dysautonomia. I had it every day for 3y, it was soul crushing. Couldn’t stand up, felt like my body was moving like I was on an accelerating elevator, head zaps, dizziness…

You also have AS. Between the AI dysautonomia, neuropathy and AS you may be able to get IVIG covered. There’s too much going on there with the immune system to think that you’re going to dig your way out of this just treating infections…you yourself have even noted that you’re afraid to try.

With the number of autoimmune conditions, especially neuropathy and dysautonomia, you have going on, you need to be on IVIG. This is madness. Anyone with any knowledge of autoimmunty will tell you that. But of course, you know best. Seems to be a theme here.

Post Edited (dcd2103) : 11/9/2021 5:54:52 AM (GMT-7)