Sunnivara's blog
Ramping Up?
Submitted by Sunnivara on Wed, 2010-09-01 14:41.cholestyramine got rid of my leg pain?
Submitted by Sunnivara on Sun, 2010-05-02 15:41.I've had mysterious deep achiness and fatigue in my legs and feet for years. It would come and goes probably an average of 1-2 days per week. It would feel as if I'd been on my feet for 12 hours straight, sometimes so bad I'd have to take some Advil and go lie down. I know it wasn't from being on my feet for a long time, though, because it often started when I first got up in the morning. I used to blame it on my untreated/undertreated thyroid but when I got my thyroid hormones to a decent level and nothing changed I had to consider something else. Then I learned about my low vitamin Di levels and worried it was osteoporosis and got a bone density check. That came back "excellent" (despite low D, so I chalk that up to taking magnesium supplementsi) so that wasn't it.
Anemia and copper
Submitted by Sunnivara on Tue, 2010-04-20 17:59.My Red Blood Cell count has been borderline low for a long time. When I was first tested when I started the abxi protocol a couple years ago my RBC was just below normal range. I think it was about 3.76 (ref 3.8-5.10 Million/uL). My B12 and folatei tested good. My ferritin was a little low but not dire. I started taking an iron/folate/B12 supplement. In a few months the ferritin went up to good levels but the RBC stayed borderline, just inside normal. For the 2 years I've continued taking the supplementsi but my RBC has remained low, hovering around 3.90, never really budging much.
Feeling lousy from cholestyramine?
Submitted by Sunnivara on Sat, 2010-03-27 11:52.Bummed
Submitted by Sunnivara on Fri, 2010-02-05 17:46.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.
Odd iodine experiences?
Submitted by Sunnivara on Wed, 2010-01-27 16:47.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.
Augmentin affected my thyroid?
Submitted by Sunnivara on Sun, 2010-01-17 14:53.I did something crazy
Submitted by Sunnivara on Sat, 2009-11-14 02:44.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?
Cpn titers increase
Submitted by Sunnivara on Tue, 2009-09-29 16:28.Tini insomnia?
Submitted by Sunnivara on Fri, 2009-09-25 17:07.Switching from flagyl to tini ... anything I should know?
Submitted by Sunnivara on Fri, 2009-08-14 19:45.Blood pressure down - sign of more improvement?
Submitted by Sunnivara on Mon, 2009-08-03 16:05.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.
Blood Battles
Submitted by Sunnivara on Mon, 2009-06-15 13:56.Flagyl Woes
Submitted by Sunnivara on Mon, 2009-06-08 13:15.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.
Vitamin D2
Submitted by Sunnivara on Sat, 2009-05-23 12:43.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?
