Sunnivara's blog

Depressed - Asthma coming back!

I started taking abxi in 2008 for "adult onset asthmai" after a bad chest cold. After several month of abxi the "asthma" was gone. It has been 4 years since I had any asthma symtpoms and have needed no asthma medication of any kind all those years. I considered myself 100% asthma-free.

I have been completely off the abx for about a year now and during that year I remained asthma-free... until about a week ago. I had two separate instances of exercise induced asthma incidents. They were mild. But this is how it originally started years ago and got worse.

Doxy and Anemia

Just an update...

I took a break from the doxyi for a couple months. As suspected my RBC and copper levels increased while off the doxy. Both are now within normal range whereas they had been low on doxy and dropped even more when I had upped the doxy dose several months ago. It definitely seems to have been the cause of the anemia and copper deficiency I was experiencing. I'm back on a much lower dose of doxy now to try to find a balance.

Jan labs also showed that my cpni titers have gone down despite the lower doxy. (IgGi 1:64, IgA 1:32, IgM 1:10) This is a good thing considering I also have not done tinii or flagl pulses in about a year. Perhaps I can leave the doxy low to preserve my RBC and still make further progress if I get back on the pulses.

Other injuries reduce back pain

I'm not sure why I'm blogging this, since I don't think it has any relation to Cpni. Just another pondering on the way the body works, I guess, since I know we here tend to be interested in all sorts of ways the body woriks.

Yesterday, while walking down the stairs, I "missed" that last step and twisted my ankle. I went down hard. The pain was so excruciating I got some sort of chemical rush that caused fuzzy-headedness, nausea, and chills. I was sure I had broken my ankle. Fortunately, other than a little stiffness, it's ok. I can walk on it just fine. It's only tender when I bend or flex it much. 

Bizarre throat cartilage infection

The day after I doubled my doxyi dose I had a sudden onset of headache, stiff neck, and a pain in the front, center of my throat, above the adams apple where the neck meets the jawline. At first I took it to be a tender swollen gland. Doing a little research online, however, I realized there is no gland in front of your throat there. This had me a little concerned. That, combined with the fact that it quickly became very painful to swallow, prompted me to go see a doctor yesterday afternoon. (Because it was a short-notice visit I just went to a primary care physician, not my Cpni doctor.) He checked all around my neck and throat and found nothing unusual. He confirmed that there are no glands there.

Ramping Up?

I'm currently taking 250mg azi daily and 200mg doxyi daily. My doc wants me to "ramp up" by reducing the azi to 250mg MWF, and upping the doxy to 400mg daily. While the doxy is definitely a ramp up it seems the cut in azi would counter it. Is doubling the doxy really going to more than make up for the cut in azi?

cholestyramine got rid of my leg pain?

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

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 folate">i 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?

I started Questran/cholestyramine about a week ago for possible biotoxin buildup. From what I've read researching "chronic neurotoxins" I should be feeling better within a few days to a couple weeks of starting this. But the last several days I've actually been feeling worse. More tired and achy, and head in a complete fog. I don't understand. Seems some people take this to actually help alleviate these symptoms. Shouldn't I be feeling better, not worse? Only thing I can think of is it's interferring with the absorption of all my meds, vitaminsi, supplementsi, although I've been doing my best to take them as far apart as possible. Anyone else feel worse on cholestyramine? Anyone gotten worse before you got better?

Bummed

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?

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?

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.

I did something crazy

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

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?

Tini insomnia?

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. 

Switching from flagyl to tini ... anything I should know?

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)?
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