So I went to see the Wizard in DC and I'm starting another round of abx today. It's been about an hour since I swallowed them and I'm waiting for the deluge. This time it's doxy and bactrim while I wait for more tests,
Since I got home -- completely off abx for five weeks -- my symptoms sort of got better except for this thing that happens starting sometime in the afternoon -- my head will start bobbing with my heart. That doesn't sound bad but it is, it's so strong I can't focus on anything else. After the head bobbing starts it will start to travel all over my body and then the twitching will start.
So I started reading about what this could be, like WHY is it doing that, and I came up with a bunch of hits for something called aortic insufficiency.
I've been trying to get regular doctors to help me for so long I don't even know where to start trying to get someone to check this out. Who do I talk to? A cardiologist?
Posted by Lymetoo (Member # 743) on :
I would think so. Do you know what tests are needed?
Posted by Jordana (Member # 45305) on :
No I have no idea. I don't know a single thing about cardiology. I bet I start with the guy and need another kind of specialist.
No wonder people are sick for years, it takes a couple just to figure out who to see.
Posted by SickSam (Member # 45330) on :
You could get an aortic ultrasound, which won't show the arch but will show a lot of the rest of it. Other than that, it's a thoracic MRA or maybe CT scan, or a cardiac MRI.
I have the same head thing. I know the problem is around my aortic arch. I had an alternative doctor order an MRA of my chest, and of course it came back fine. I've also had numerous aortic ultrasounds. Always fine, but I know there's a problem.
I even had a pet scan, hoping it would show the chest inflammation. It showed kidney inflammation, but nothing in my chest.
I've finally decided the infection is causing the problem, and no doctor will ever be able to see it with their normal-people tools. It really blows my kind that they can't see this though.
Posted by Jordana (Member # 45305) on :
I think I ( and maybe you) need an angiogram and biopsy. The problem might not be in the heart but in the aorta higher up as it moves into the neck and brain. They perfuse the vessels with gadolinium or something and then do a CT ( or something).
A lot of what I find out medicine can do is some kind of fiction though. How to get that test is the real question.
Posted by SickSam (Member # 45330) on :
Hey, a lot of that actually sounds like me. I hate reading stuff like that... Gives me anxiety. I guess dying in my sleep would be the best way to go though.
I've had CTAs too (CT angiograms) for suspected pulmonary embolisms. They're always "fine". I had a coronary angiogram too.
If yours is a valve problem an echo might be helpful. I've had several of those too. There are some places that will do a "cardiac screening" for cash. That's how I've gotten a few of my tests done.
Posted by Jordana (Member # 45305) on :
Yeah. It all amounts to possibly a year of money and work no matter what. I'm gonna give it a shot.
You've been seen by a rheumatologist for vasculitis I hope. If not, whenever you get the energy; another path in the labyrinth.
Posted by SickSam (Member # 45330) on :
Yeah, I've seen a rheumatologist. Once she heard that steroids make me sicker and saw my Igenex test, she said to treat Lyme. I also had the ginormous Mayo workup. Pretty sure I have a vasculitis caused by Bart or Brucella though.
Posted by Jordana (Member # 45305) on :
Might be worth it to look at it again SS. If you've got it you might not feel better until you treat both.
Posted by SickSam (Member # 45330) on :
Maybe so. I can't do steroids though. Bactrim actually treats vasculitis, and that has helped me a lot in the past. I have a prescription for plaquenil too, so maybe combining bactrim with plaquenil would be useful.
Posted by Jordana (Member # 45305) on :
Bactrim treats vasculitis?
Lit?
Posted by Jordana (Member # 45305) on :
BTW if you have vasculitis there are other things to treat it besides steroids, conventional and alternative.
Posted by SickSam (Member # 45330) on :
I've read hyperbaric treatments are good for vasculitis, and maybe turmeric if i remember right???
Posted by Jordana (Member # 45305) on :
Yep, both. Turmeric has been pretty awesome for me among about ten thousand things that have done in total exactly nothing. I've never done HBOT.
Posted by SickSam (Member # 45330) on :
Awesome. I just started turmeric by accident (it's in something else I'm taking). Hopefully it'll help me too. I'm also gonna try working on being able to tolerate my mHBOT chamber.