1st followup since dx

[SarahLonglands]

No, can't get them to post, so I'll try again tomorrow!

[SarahLonglands]

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[Anunymouse]

First day off pulse. Nothing like a couple days of feeling all the negatives of being drunk, without ever being drunk. I hate flagyll, want a nap :laugh: 11 days to my next neuro appt. Holding up my magic 8 ball and predicting... she will want me on aubagio.

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.

[SarahLonglands]

Oh!! Good luck with that, you poor old thing!

[Anunymouse]

Thinking about it makes me nauseous. Having someone mess with my teeth has always been a 'button'. My years long stint of lidocaine and novocaine not working on me and having dental work, stitches and a spinal tap done without painkiller pushes my anxiety levels off the charts even for a cleaning.

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:

[SarahLonglands]

Same here!

[Anunymouse]

May have had my first relapse day before yesterday. I'd been feeling a little odd for a couple days mainly in the mornings. I was at the office and felt like my blood sugar had bottomed out. I'm not diabetic or anything but every now and then it happens and has as far back as I can remember. And it happened shortly before I was planning on going to lunch so it didn't seem like a big deal. I decided to just hang out the 10 or so minutes that it would usually take to pass, then tried eating a candy bar and a soda for a quick fix but it just kept getting worse. My pulse started racing, pretty much everything I'd expect to feel after a good fight, lots of adrenaline dump aftermath. Weak and tingly pretty much everywhere, balance was off, dizzy etc. But it wouldn't stop and my body wouldn't settle. I'm not sure how fast my heart was going, but I'm guessing 200+bpm at times. My body was in full fight/flight mode for about an hour. One of my co-workers took me to the ER, I decided I was too out of it to drive myself. Tremors through most of my body, pretty severe at times, sky high blood pressure etc. Every time I moved my entire lower body went screwy feeling, can't describe it other than 'tingly' and that is several magnitude lower than I mean. Scared the hell out of me.

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.

[SarahLonglands]

I have only just seen this: how do you feel now? I had a similar thing happen to me in my early MS days: I was going up to Edinburgh on the train with half a dozen violins at the time and it lasted all day and into the next: a cold winter's day at that! The thing is, it never happened again and I had forgotten all about it until I read your post. I have no idea whether it was a relapse or not.

Please let me know how you are and I won't leave it so long before I check!

Sarah

[Anunymouse]

Ive intentionally forced myself to stop reading on this until today, trying to give my brain some time off. But unless I'm working, I'm worrying so that worked well.

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.

[SarahLonglands]

I haven't checked until today either but it certainly sounds as though you had an xmas to remember! I am glad that you missed a pulse. Pulses were designed so that you could take them when they suit, but too many people think they have to be done like clockwork.

[Anunymouse]

Back again for some quick notes. The Jan pulse went easy, barely noticeable. But I was feeling so bad right before it might have just been unnoticeable in comparison. "Sure you can call that a beating, but let me tell you about the beating I took before!" :Laugh:. Just finished Feb a few days ago, it also went easier than it has in the past. That worries me from time to time, mainly because I order my stuff direct from India. But, since ALL antibiotics in the US are made in India or China anyway, probably doesn't matter.

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 ) and my back feels normal. I think my electric bill is going to go up over the next few months :laugh:

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.

[SarahLonglands]

Anunymouse, if you mean the treatment page on David's site, it is referring to people who have only just started treatment. You build up to the full dose of the bacteristatics, then build up to a five day pulse on metronidazole. Some people choose to do metro gull time eventually but I never did: I couldn't stand the taste!

Sarah

[Anunymouse]

Back again, been a while.

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

[SarahLonglands]

Look, if you have restarted on abx the most important supplement to take is something to preserve your microbiome, so a good pre/probiotic, live yoghurt or live kefir, taken two hours apart from abx. Do that and you can start thinking about D3 and B12, don't do it and you are wasting your time.

Sarah