1st followup since dx
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Re: 1st followup since dx
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Re: 1st followup since dx
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Re: 1st followup since dx
On the upside, I have to get my wisdom teeth removed and I'm "dentally old" which makes the whole thing worse, so I have that to look forward to :laugh:
Adding 300mg biotin to my list of supplements.
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Re: 1st followup since dx
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Re: 1st followup since dx
If I could go back in time for only 1 event, good chance it would be when my dentist pushed for removing them when I was 12 and it would have been a 20 minute affair with 1 stitch in each corner of my mouth. But nooooo, I had to tell him no and pay for it a few decades later :laugh:
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Re: 1st followup since dx
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Re: 1st followup since dx
EKG was normal, blood and urine were normal except an elevation in some of my white cells, pretty much no reason they could find. They put an IV in, gave me some crackers and apple juice and a dose of something that begins with an A to slow down my body. Their best guess was my blood sugar dropped, electrolytes dropped, and my body responded with massive adrenaline and things snowballed. I honestly don't know if everything that happened was a direct result of one thing, or if something went screwy and then I put myself into a panic that exacerbate everything badly. I've been in I don't know how many fights, some life/death, and I don't know how many of just competitive fights so the post adrenaline feeling is old hat. But this lasted for hours instead of minutes and was way stronger than it should have been. Normally you just need to sit down for a bit until your body normalizes, but it just wouldn't stop.
So yesterday was my normal neuro appt anyway, but they let me come in several hours early. I still felt weak and 'tingly' when I moved positions but not as bad. Still feeling a little bit today but mostly tired. Overall I feel like I had a really hard fully body workout, which I more or less did I guess.
Neoro says my MRI's from last month are stable from the last go round so that's 'excellent', nothing new or active. Historically since the first go round I haven't had anything show up as new or active except the few months I went off the antibiotics and am once again stable since I've been back on them. She thinks I had a short term relapse that kicked off everything. I asked if she thought I had put myself into a panic attack, she says I may have ended up there but I didn't start it myself. I'm not sure if that's good or bad really. I'd prefer to think I did it to myself than to think I didn't, if that makes any sense. I am terrified of things progressing and try as I might, it's always on my mind. So I can see how that would play into it.
BP was high again yesterday, it's always high when I go in there. Anxiety over the whole thing. She put another bag of saline in me, my BP dropped to normal by the end of that. But I spent most of the time there making bad jokes and being a general PITA. So basically being me :laugh:
Neuro wants me on aubagio, no surprise there, as it is supposed to reduce active lesions and relapses. My first neuro said to expect 4-6 per year and the drugs *might* reduce that number by 1. But they basically do nothing. I'm not getting active lesions and have had I'm guessing 1 relapse in 2 years but I'm freaked out. I don't know what to do besides keep doing what I'm doing and hope for the best.
Ive added biotin to my usual mix, creatine and ldn nightly along with the antibiotics. I think I'll keep on this plan. The more i think about it the more i think mybrain is trying to killme.
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Re: 1st followup since dx
Please let me know how you are and I won't leave it so long before I check!
Sarah
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Re: 1st followup since dx
Anyway, after the neoro visit, every morning if i felt like my blood sugar was dropping id work into a mild panic. After a couple days i went to my regular doc and he prescribed 10mg of lexapro for anxiety. The 1st pill put me in bed for the day, complete exhaustion. I started halving them, and shortly after started getting big cyst like things on my back so i stopped entirely and they cleared up. Startedback onit xmas night.
Xmas day i felt a little off periodically, right before dinner i felt like i was hit by a truck and had to go to bed. I was rrying not to ruin the day for everyone else. Heart rated climbed etc but i was able to keep it in check. But there was definite concern i was heading down the same path. So the kids went home with the grand parents in case i was headed to the er. I really thought i just might not be able to handle the stress, and that is huge to me.
As the night wore on i started feeling like i had a bad stomach bug and that might explain things. My fil called at 2am, my son had been sick repeatedly and by the next day was vomiting blood. So back to the er. Hes ok.
Day after that I'm up till 5am with my daughter. Shes ok.
Day after that it hits my wife at work. She says she understands now why i was worried. You go from fine to i think I'm going to die like someone flipped a switch. We're both still recovering, tired and achy. I tried but have been completely unable to empty my stomach no matterhow badly i wanted it empty. The rest ofthe family you could set a watch by.
Enough gross, but it's been a memorable xmas.
So on to me. Do you know that feeling when you get up, your muscles tingle and you just have to stretch? I get that pretty much all the time, lower back and upper legs. It's been about a month of it. I hate it. Lots of fatigue, neck and headache, periods of nausea. Most of it i can attribute to the lexapro, sick, and spending too much time on the couch. But not the back. My wife has backpain from the bug so I'mkind of hoping I'm dealing with similar. I'm still dealing with anxiety, still don't know if i sent myself to the er, just don't know. I'm a bit of a control freak, losing control is a big deal to me. I feel better when I'm working and my brainis off it, but work is slow right now and I've been home to long with nothing to do until the new year.
Personal note, skipped the dec pulse entirely. It coincided with a personal trip and id have been in the feel horrible phase,, same with moving it to the end of the month. delayed this month because of the bug but figure how much worse can i feel? Day 1 today. I have a family trip in 2 weeks, should be passed it by then.
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Re: 1st followup since dx
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I was more tired than normal but I was still in the gym as normal instead of moping around the house at night feeling sorry for myself. Still waiting for the bad taste to leave. I feel like going to a back alley and licking the concrete to see if I can get it out of my mouth

Funky tingle is still in the small of my back, it doesn't have any rhyme or reason to it. It's more localized than before, small place in the small of my back above my tailbone and below my waist for the most part. Comes and goes, doesn't seem dependent on specific range of motion, and when I'm busy I don't notice it at all. I still think it's psychosomatic. I picked up a tens unit, always liked what the good ones at the chiropractor's office feels like. 20 minutes with it on my back the other night (ok 60 the first night

Wisdom teeth coming out on the 23rd. Yay.
Sarah: Reading the docs on the protocol I see mention that the intent is to build up to the antibiotics full time. Does that mean taking flagyll daily beyond the 5 day pulse, or is it just overall you're always on something? I'm currently doing the doxy daily, zith MWF, and flagyll 3x5 monthly.
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Re: 1st followup since dx
Sarah
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So i went back on the regimin and everything was normal for the routine. Several months ago though i just started feeling bad, day to day just horrible and the pukses were just brutal. It was hard to deal with day to day life, all i wanted to do was lay down and be miseable, nausea, dizzy. Entire mid section tender and bloated. This lasts a couple months.
Anyway, ended up with the new neuro about 6 weeks before the above (moved states) and he ran a bunch of blood as a get started with a new patient type thing. As we go over the results he glosses over "here's your hepatitus" and keeps cruising. I had the hep b series twice in my 20's (i missed the titre the first time so i got to repeat it) and ive never taken anything that would put me at risk of the others so i ignored it
As i feel progressively worse the whole hep thing keeps popping into my brain and i start doing a little research, and yep, hepatitus reads an aweful lot like what im going through. So i pull the labs and found what the dr was referrring to, was indeed that ive got b immunity.
But i come across something called antibiotic induced hepatitus, which is a thing you might get by taking heavy doses of antibiotics long term. Kind of what ive been doing for a couple years. And maaaaaaaybe i had slacked off on taking the nac, or anything else that kind of helps you not abuse your liver, so there was a pretty good chance that i had caused my own problems and my liver was swollen and unhappy.
So i stopped the antis about 6-8 months ago, started back on nac religiously and a few other supplements. Since then things have normalized fortunately, at least in that aspect.
So on to the other stuff. This month was my first mri in about a year to 18 months, id have to check and that requires getting off my butt. I have a new comfy couch and tv is talking so thats not going to happen.
Anyway, new neuro #2 (i was unimpressed with #1) says he compared to 2015 and its unchanged, and if memory serves 2015 was uchanged from earlier ones, so to date the mris have been basically stable since i started. Misc symptoms and fatigue could definitely improve but at least my brain hasnt exploded yet. Im debating whether ot not to go another round with the protocol or giving my body some more time off.
Not really much new to add obviously, but note, take care of your liver

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Re: 1st followup since dx
Sarah