15+ years of Chronic Symptoms gone
**Part 2: What I learned that I couldn't fit in my first post (the things I wish someone had told me sooner)**
My first post about how I finally got better after 15+ years of chronic illness reached far more people than I ever expected, and my inbox filled with the same sort of questions asked a load of the same ways: what did you do to fix it in more detail +what would you actually do differently if you were me? So instead of retelling my story, I want to use this post to answer that properly.
I'll be honest first about why this is hard for me.. After being gaslit by so many medical professionals over the years, I have a real angst of being gaslit again by strangers, because the trolls on here are super… - ouch :/ But the response to my last post showed me how many people are stuck in the exact place I was, so I feel I owe more of those people the parts I left out.
This is my personal experience, not medical advice. Please do your own research and ALWAYS work with qualified professionals. And if you think cavitations are BS please do not read on 🙄
**Lesson one: "normal results" is not the same as "nothing is wrong."**
For years I treated a normal blood test as a closed door. It isn't. Standard tests and standard imaging only show what they are designed to show, and they are not designed to find everything.. The chronic jawbone infection that turned out to be central to my case never appeared on a single standard dental X-ray, 6 MRIs (with and without contrast), or blood panel/ urine/stool in over a decade plus. Normal results often just mean the right test hasn't been run yet. Or cough cough... normal results can mean the avergage of the people whom the bloods have been drawn against are not superman optimal but that is a story for another day. Let's look at HbA1c for years my "average" was "normal" NO- my average was exactly an average which is the sum of crazy high's and crazy low's... yes, looked "normal" but was anything but.. I was hypoglycaemic and it was only getting worse…
**Lesson two: the right scan matters more than the number of scans.**
I had endless imaging over the years. What actually changed things was one specific type of scan, a 3D Cone Beam CT (CBCT) Full Face, read by the right person. If I could go back, I would have stopped repeating the same tests hoping for a different answer and pushed much earlier for imaging that could actually see the area in question. Volume is not the same as the right tool and having the right specialist is key. As said in my prior post, I went to Neurologists, Migraine specialists, Many dentists, Chiropractors , Neck specialists doctors, Mold specialists doctors, Lyme Specialist functional Medicine Doctors and the list goes on - the works ... yet none were the right person who could recognise the issues.
**Lesson three: get a second set of eyes on the actual images, not just the report.**
A scan is only as good as the person reading it. I made a point of seeking additional, experienced opinions on my CBCT rather than accepting the first interpretation (which was told there was NOTHING wrong with it), and that is what surfaced something that had been overlooked for yearssssssssssss. Ask for your actual images, not just the summary, and consider having them reviewed by someone who specifically knows what they are looking for... which from my experience, there is not many, even if they call themselves a "specialist in the field". (I used a place online and remote for my other opinion, and it was an online review that figured out the 15 year problem)
**Lesson four: this is not anti-medicine, and the answer can come from inside it.**
I want to be really clear, because this gets misread. The person who identified my issue from the CT scan was a mainstream, Western-trained Dental doctor. Not a fringe practitioner, not a theory off the internet. The lesson was never "abandon western medicine." It was "keep going until you find the clinician within it who will actually look properly." Those doctors exist. The problem is most are not trained to look in this particular place, so you may have to search for the one who is and that thinks outside of the box. Or looks to a different scan (a lot of dentists don’t do this)
**Lesson five: chronic, hidden infection can look like a dozen unrelated conditions.**
This is the insight I most want people to think about. For 15 years my symptoms were treated as separate problems: migraines here, blood sugar there, histamine reactions, chronic sinus issues, fatigue, gut problems, all in my head (eyeroll here with a yada yada). Nobody connected them (except for one person who is yes woowoo and intuitive but it is so hard to weave this into the story for it to all make sense- if you want to know more about this I can DM). What I have come to believe is that a single hidden source of chronic inflammation can present as many different illnesses at once, which is exactly why it gets missed. If you have a long, scattered list of symptoms that no one can tie together, that pattern itself might be the clue. AKA Have you had any teeth pulled?
**Lesson six: write everything down, and stop apologising in appointments.**
The dismissal does something quiet and corrosive .. You start shrinking your own story, changing it, make it seem not as bad, hiding how bad it really is, apologising for taking up time etc. I kept a written record of my symptoms and my history, and took a lot of PHOTOS, and walking in with that changed how seriously I was taken. Once they would see the PHOTOS of my face constantly swelling you could not debate me. You are not being difficult by advocating for yourself. You are doing the one thing that might save you years...
**What changed for me.**
I cannot prove causation and I will not pretend to. I am not saying this is behind everyone's illness or that it will work for you. I am only reporting what happened in my own body after surgery to clean out the infection: no migraines since, after losing half my months for over a decade. Hypoglycaemia episodes resolved overnight (still really blows my mind). Histamine and fragrance reactions dramatically reduced (but gosh that is so smelly and awful anyway, c'mon guys/gals please don't wear that rubbish it is just like smoking). Sinus pressure largely gone. Energy back. Foods I could not tolerate for years, totally manageable again- AKA gluten- like what? I can eat italian cakes with a lot of gluten and not have a swollen face migraine and stomach pain- it is real but very wild.
**Why I keep posting.**
If you have investigated everything else and you are still stuck, it may be worth learning about 3D CBCT scans, cavitations, chronic jawbone infections, failed extraction sites, and root canal complications, and then finding a clinician who will take it seriously. The right doctor is out there. It took me 15 years and far too much money to find mine, and I do not want that for you. I do not want anyone to have to go through 1/10th of what I did.
I am not affiliated with anyone and I do not benefit if you read this. But like last time, if you want to know who I saw or what specifically worked for me, DM me and I am genuinely happy to share privately as I don't want this to seem like a spammy Reddit post. I want to help people not go through what I did, but I want to abide by Reddit rules and not overstep the mark. I have read every message.
To everyone who reached out after the first post, thank you, it was actually super emotional to read so many people having almost identical issues. I sort of wished, over the last few years I had people like myself to navigate this all with as it was really not a fun experience, and until you feel like as low and as crap and as in my pain as I would have - you just don't know what you just don't know...
So get the 3D Full Face CT Conebeam scan and if you got one, like I did and it was "fine" please get a second referral like I did. The place i went to was fully online remote and I think cheap. Also, if you are curious about the alternative lady that forecasted all my problems, I am happy to DM about her, I don't really know how to explain all that she does without being dismissed on Reddit. Happy healing. And yes your life can change once the root cause is found!