I finally got a prescrip for doxyi and started it this morning. So far so good ... no nausea. I still don't understand why the instructions say take on an empty stomach in one section then later say it can be taken with food. A bit confusing.

How long does it take to see doxy die-off reactions?

So am I on a proper CAPi now?

azithromycin 250mg daily

doxycycline 200mg daily

monthly flagyli pulses (1000mg daily for 7 days)

For a very long time I've been an extremely noise sensitive person. I'm that annoying person at work who tells the guy waaaay down the hall to turn down his music when it's on the lowest possible notch above OFF. My husband gets upset if I want to go to bed before him because then he knows he can't watch TV any more. Despite the fact that the TV is on the first floor and the bedroom is on the second floor I make him turn it down so low he can barely hear it. If I can hear even the SLIGHTEST whisper or vibration from it I can't go to sleep.

Actually, I should say "couldn't" go to sleep.

Lately it seems to have changed. I can sleep with the TV on ... not too loud but it's ok to at least hear it now. I can still doze off without a problem.

I'm just making notes here...

I finished my second flagyli pulse yesterday. No significant side effects or reaction other than my butt was really dragging towards the end of the week. By yesterday evening I was about to collapse from fatigue. Today I'm so sleepy I can barely hold my eyes open as I type this despite getting a full night's sleep.  Hopefully as it gets out of my system I'll get my energy back like I did a day or so after finishing the previous pulse.

On the positive side I'm surprisingly pain-free today. I'll take sleepiness over pain any time.

During my first flagyli pulse I craved bread with peanut butter every day sometimes eating it 2-3 times a day. When my pulse was done so was the desire for peanut butter. I thought maybe it was a coincidence but the first day of my second flagyl pulse I'm back into the peanut butter jar! Why on Earth would flagyl make me crave peanut butter? Anyone else get weird cravings during pulses?

After a couple months on 500mg/day of azi I just couldn't take it any more. The constant bone-deep flu-like achiness is just too miserable to tolerate for months on end. After just a few days back at 250mg I'm starting to feel better. My doc and I agreed I should stay at 250mg/day for the azi for a while and we're going to add some bactrim. Hopefully that will make things a little easier. I just got a prescription for my next flagyli pulse and the bactrim so now I'm trying to decide if I should wait until after my flagyl pulse to start the bactrim since starting both at once might be too much. What do you think?

I just got back from a half hour bike ride. I finally got the nerve to exercise without using my inhaler beforehand. I got a good workout, making sure I was breathing heavy the whole time to give my lungs a good test. They work! I made it through the entire 30 minute ride without my chest tightening up. No coughing and wheezing! Just normal heavy breathing from exertion but without struggling for air. Six months ago I would have been wheezing and coughing up a storm within 5 minutes of trying that. It felt so good to have air free-flowing in and out of my lungs and know it wasn't the albuterol making it possible!

Today's the last day of my first flagyl pulse and it hasn't been too bad. I was already feeling kind of lousy from the massive azi dose I'm taking and was worried the flagyl was going to take me over the edge. But so far it's been tolerable. Mostly all I've noticed is I'm cranky, a little more tired, have an odd craving for bread with peanut butter, and the first day or so I had to pee a lot. Is it a diuretic?

 

I finally got the nerve to start flagyli a few days ago. So far no significant side effects except that I'm a litte tired and rather irritable and snippy. The worst throughout my treatment so far has been the 500mg of azi. I was doing fine on the 250mg/day but ever since I was bumped up to 500mg/day I alternate between feeling pretty good and feeling absolutely dreadful. The worst part has been the pain. I get 2-3 days a time where I get flu-like aches and pains but worse than a typical flu. Nowhere specific. They just seem to be random pains all over that come and go. I didn't know nothing-in-particular can hurt so bad. Is this a common die-off reaction?

I was supposed to start my first Flagyli pulse today but chickened out. I made the mistake of looking up comments on askapatient.com and it looks like the worst of all abxi! Besides the horrible bouts of nausea most people seem to experience there was a host of other frightening side effects: suicidal thoughts, hysteria, heart problems, nerve damage, seizures, death!!! It seemed far worse than the comments I saw about azi there. And it seems there are plenty of people here who experience misery on Flagyl. Is this stuff really so awful? How do I get the courage to try it? Is there an alternative abxi?

So, I'm 5 months into abxi treatment with azi and one thing my doc and I have noticed is that my RBC keeps dropping each time we get blood work done. I am now officially below normal. The doc doesn't seem terribly concerned. She says it's not unusual for this to happen because of the system being so heavily taxed by infection and abxi treatment. But I haven't heard anyone else here mention that problem. I've been taking "blood builder" supplementsi but it doesn't seem to be keeping up. For the most part I've been holding up but sometimes I can really feel it (lactic acid burn and shortness of breath just walking up 1 flight of stairs) and it's starting to worry me. Anyone else had this problem?

After a month on azi my IgGi titer went from 1:128 to 1:64. After a few more months on azi it has not budged any more and is still at 1:64. My symptoms also improved the first month or two then seem to have halted improvement. Now my doc wants to take me off the azi to "see how I do" without it. Huh?!

I think the reason progress halted is because I'm still only taking azi, not a CAPi, and think we need to be more agressive, not back off. Everything I read says more, not less.  My sister was on azi for a year and when her progress halted her doc added Avelox and she had dramatic improvement after that.

I couldn't believe what I watched on TV last night. It was a show called Mystery Diagnosis and this episode was about an 11 year old girl who could not exert herself even slightly. If she walked up even a few steps she would experience chest pain/burning, headache, dizziness, shortness of breath, and even fainting. She would have to stop to rest halfway up the single flight of stairs in her house. Too me it was obvious something was very, very wrong, possibly a heart problem. But she went to doctor after doctor and they would tell her things like she's just lazy, she needs to exercise more, she too fat (only 15-20lbs overweight!), or had asthmai (yet they wouldn't give her an inhaler).

The doc has talked about upping my azi dose now. But because my blood pressure is still somewhat erratic at times I'm kind of freaked out about aggravating it with a higher azi dose. She's mentioned Benicar a couple of times. She says it's good because it will not only calm the bp but reduce the inflammationi. But I'm concerned about that too since my bp does not stay high consistently. It can fluctuate from normal to high and back again literally within minutes. What will Benicar do when my bp is not at the high state? Will it drop too low and will I end up passing out driving to work and smashing into a tree?

The last couple weeks seemed to be pretty mild for me. The porphyriai/die-off symptoms had diminished considerably compared to the first month on azi. But all of a sudden they have returned with a vengeance the last few days. Right now, as I try to write this, I have to stop typing frequently and huddle up with myself, tucking my ice-cube fingers under my arm pits, as another wave of chills washes over me. Typing is difficult because of the shivering. (I'd be scared to know what my bp probably is right now!) Head's in a fog, can't concentrate on my work.

My doc says with most of my blood tests (including lots of immunei function tests) looking good, lung function improving, and Cpni antibodies titers going down, there is no reason to increase my azi dosage or add other kinds of abxi. So 3-6 months of azi should be all I need. From stories I've read here I'm kind of worried azi alone won't get it all and it will come back later down the road. Has anyone (without MSi, since MS seems to be a tougher fight) fully recovered and stayed well from treatment with just azi?