Got recent labs results back. IgAⁱ titers are up. Lipoprotein(a) is up (which doc thinks goes up with chronic infection).

Grrr. I had been making progress. I thought I saw a light at the end of the tunnel and I'd be off all these meds soon. Now the light has faded.

Why does it look like I'm regressing now? I had swtched from flagylⁱ to tiniⁱ. Maybe tini's not working for me as well? But I can't tolerate the flagyl any more so going back to that is not an option. What else is there?

 Is it at all possible that higher titers (temporarily) could be a good sign, showing my immuneⁱ system has strengthened and is working more aggressively on the cpnⁱ? If not, I'm sad now.

Just blogging my experience with iodine supplementation lately. As some of you may know from my previous blog post (http://www.cpnhelp.org/augmentin_affected_my_thy) I've been having trouble tolerating my thyroid meds lately and stopped taking them. Because of that, I figured I'd better make sure my thyroid has all the nutritional support it needs to keep going on its own. I started with some low dose iodine supplement (300mcg, 200%RDA) to see how I'd tolerate it. I seemed to do fine other than heachaches (but I've been having headaches ever since I started having trouble tolerating my meds, so it started before the iodine). After a few days, I took twice as much. Still seemed to do OK.

Ever since I took a break from CAPⁱ to go on Augmentin 2 weeks in Nov for a sinus infection I have not been able to get back on track. I went back on the azi and doxyⁱ after the Augmentin was done. Some time later my blood pressure started slowly creeping up. I figured it was because I had started back on the azi and that's been known to raise my bp before. I upped the Benicar, figuring it hadn't kicked in enough yet to counter it. (I had not taken the Benicar the 2 weeks I was off the azi and my bp was perfectly fine). But after a couple more weeks the bp just kept creeping up despite the Benicar. I quit the azi. A few days off the azi but still on the Benicar and my bp was still creeping up. This made no sense any more. I stopped everything except the Benicar and thyroid meds.

After reading this website...

http://onthepharm.net/2007/08/flagyl-alcohol-reaction.html/

...I decided to take a chance and have a glass of wine on my second day of a tiniⁱ pulse. I had no negative reaction whatsoever, other than the anxiety of worrying about what might happen!

Next morning I was still fine. On the third night of taking tini I had 2 glasses of wine. Still no bad reaction.

In fact, in stark contrast to flagyl, which causes me severe depression, I've actually been in a particularly good mood these last 2 days. Is it possible that tini+alcohol could actually have a positive effect on those who don't get violently ill from it?

I just got the latest lab results and my cpnⁱ antibodies titers are way up. When I first started abxⁱ over a year and a half ago they were 1:256 I think. Then we got them down to 1:128 and eventually 1:64. Now all of a sudden they are 1:512! Why would they jump way up now? All other signs show things are improving. My bp has gone down, I had to cut my Benicar in half. I don't need an inhaler at all any more. I think it's been a year since I last used it. I've been feeling fairly well overall. Any idea what would cause the titers to be twice what they were before I started abxⁱ?

I switched from flagylⁱ to tiniⁱ and, while not as bad, it's still turning out to be a rough ride. I have a constant headache and I can't sleep. My body's tired but when I go to bed my head feels like I drank a full pot of coffee. I'm wide awake. Anyone else have trouble sleeping on tini? I'm taking it twice a day, morning and evening. I wonder if I could get away with taking it all in the morning and maybe that would make it easier to sleep at night. 

I'm overdue for a pulse because my last couple flagylⁱ pulses were so bad I needed a break. My doc and I decided we should give Tindamax a try. Now I'm trying to get up the nerve to try it but am hesitant. Anyone want to share their tiniⁱ experiences or offer advice on any of tini's quirky effects I should watch out for (such as flagyl's alcohol issue)?

I think this is a good sign, a sign of continued improvement.

As some of you may know if you've followed my blog, I developed hypertensionⁱ immediately after starting azi in Jan '08. We waited for a couple months to see if it was temporary but by March '08 it was apparent my bp was not going down on its own. My doc put me on 20mg Benicar to counter the azi-induced hyertension and I've been on it ever since.

I have been taking iron and B12 supplementsⁱ for a long time. When I was first tested for all this my iron blood level was OK, B12 was good, but ferritin and Red Blood Cell count were low. My RBC was actually out of range below normal. After a year and a half of taking lots of iron I am still struggling with these two issues. Both are now within the normal range but still at the low end and have been for a long time. RBC continues to hover there at 3.84 (3.80-5.10 M/uL). Ferritin tends to hover around 40 (10-232). I take iron and B12 from multiple sources for a total of about 45mg of iron and some 4,000% of the RDA for B12 yet the ferritin and RBC levels won't budge. How much is it going to take?

Just two more days of the current pulse.

Oh, Lord, please help me hang in there ... just two more days!

I think this is one of my worst yet. The first couple days spent fatigue, irritability, and a screaming headache that would not respond to pain killers such as Advil.

The last couple days the headache subsided but now I'm suffering from digestive issues, brain fog, poor sleep, and borderline depression.

Can I hang in 2 more days? Or should I just cut it short? (This will be Day 6) My doc really discourages me from cutting pulses short or going more than a month between pulses but .... ugh! I don't know how much longer I can endure this. Pulses just seem to get worse and worse every time.

 

My lab results show:

25-OH, D3 ... 38 ng/mL

That's the one my doc pays attention to. But I just noticed lower down on the sheet it says:

25-OH, D2 ... <4 ng/mL

Does this have any significance? What does it mean?

I'started taking 4,000iu of D about a year ago when my first D test showed my D levels were only at 20. After a few months of taking supplementsⁱ I got the level up to 50ish. My doc told me anything over 40 is good and I should cut my D intake down to 2,000iu to maintain that level. A few months on 2,000iu and my levels were back down to 30. So I went back up to 4,000iu daily. After many more months on 4,000iu my latest test shows my D levels are only up to 38. Not impressive. Now, reading around this site, my doc's suggestion that "anything over 40 is good" seems low. It seems the consesus around here is that optimal D levels are more like 80-100. At the rate I'm going that seems an impossible goal. I think I'm going to bump up to 6,000iu, but is that enough?

Wow, it's been a long time since I've posted. I pop in every once in a while but haven't spent much time here. I've been trying to stay busy and get on with a normal life as much as possible. I realized I was getting overly obsessed with all this Cpnⁱ stuff and spending way too much time online researching it and reading forums. Nice to have that contact with others going through a similar thing but when you don't get anything else done it's time to pull away a bit.

Ok, this makes no sense. When I first got my vitamin Dⁱ tested back in (I think) March it was low at 20 (30-150 being "normal"). I started taking 4,000IU/day. We checked it again around May/June, I think, and it had gone up to about 50. The doc said that was good and I could cut back to 2,000IU as a maintainance level so I cut back a bit but continued taking 2,400IU-3,000IU per day. I just had it checked again and it's dropped back down to about 30. This makes no sense considering it's been summer and I have actually been getting some someshine once in a while. If anything I would have thought it would continue to go up during the summer months. Could something be interfering with absorption or causing excess depletion all of a sudden? Maybe I just switched to a bad brand?

I took the dog for a nice walk along a river trail yesterday, about a 45 minute walk. It wasn't until I got back to the car that I realized I hadn't even thought to take my inhaler with me! I went a whole 45 minutes engaged in a normally asthmaⁱ-enducing activity, and didn't even think about it! That may not sound like much, but for those of you who have been ill for a long time you know how your illness is always there in the back of your mind, affecting everything you do, and everything you're even considering doing, even if you're not consciously thinking about it. Before I engage in any physical activity since I've had asthma I have always had to briefly go over my mental checklist, at least subsciously:

1. Do I have my inhaler with me, on my person?