Friday, June 8, 2012

Follow-Up Appointment with Dr. D June 2012

Several things have been going on since I last talked to Dr. D in May. I finished Albenza, the 4th anti-parasitic medication on my treatment plan, and started Alinia on 5/23. I was a bit worried about starting it since she said it could cause vomiting, diarrhea, heart racing and more. I did not have any of those symptoms and actually felt quite good the day I started it. The next day however, I felt like crap. I felt wiped out, tired, and out of it mentally. This went on for a few days as well as night sweats, going back to waking up at night, feeling utterly frustrated, angry, and irritable, and just feeling lousy overall.

I also had blood drawn on 5/23 to check my thyroid levels. My FT3 was actually higher than last time I had blood drawn in March, although I was on less Cytomel. Since muscle testing in April had revealed that I am somewhat blocking on the Cytomel but testing really good on Naturethroid, I decided to take the plunge, go up from 1 grain NT to 2 grains, and reduce Cytomel from 68.75 mcg to 12.5 mcg. It scares me a little since I don't want my RT3 issues to come back, which basically means going hypoT, but I can't deal with all the heart racing from T3 either. It also would be nice to stop taking the beta blocker. In addition, Dr. D said that a lot of her patients are able to reduce thyroid meds as the bacterial and parasite load goes down. Once they heal completely many of them are able to go off thyroid meds completely, even if they have been on them most of their lives, or they take a much smaller dose. That's awesome!

When I told Dr. D about all the new or returning symptoms she said she believes it's all from Alinia. Not side effects, but die off. Apparently all of her patients who take Alinia have a hard time during the first round. If they have to take it again it's not near as bad. I had seen some improvements in mood and energy before starting Alinia and she believes I will feel even better than when I am done with it.

We also discussed my elevated blood sugar. It was 89 in March and 101 in May. I have been checking it here at home since the May blood test and my fasting is running between 100 to 105. Not good! She said it could be an indication of an active infection, most likely bacterial. I hadn't gotten the Diabenil yet which she mentioned during our last phone consult so she said to go ahead and get it and start taking it as suggested on the bottle. I got it in the mail yesterday.

I mentioned the white spots on my lower legs which I started getting in 2007. I told her they look like idiopathic guttate hypomellanosis to me and asked if this is typical in chronically ill people. She said not all of her patients have them but many do. She said it's common with parasite/fungal infections, can also be related to blood sugar dysregulation, and that it does improve as the patient heals. That's promising.

The cardiologist I went to see for the stress EKG finally sent the results to her and it said the following:
"A fixed defect was noted in the anterior wall and apical segment which is most likely secondary to soft tissue attenuation, although cannot rule out prior myocardial infarction."

She said the cardiologist recommended a cardiac CT but since the chest pain is gone now she would like to hold off since CTs have such high radiation. Right before the chest pain started I woke up one night with horrible stabbing pains around my heart. It was awful and very painful, but then it just stopped and I went back to sleep. As it was happening I was scared and wondered if I was having a heart attack. However, because it stopped so quickly and I went right back to sleep, I figured it couldn't have been. Now I am wondering if it was.

Last but not least I have been dealing with quite a bit of nausea. I have considered many different causes but still haven't completely figured it out. I think 5-HTP may have something to do with it but I am not sure yet. Of course it would be hard for her to know what is is from, especially since the nausea started before I started taking Alinia. She recommended a homeopathic from Nestmann called Frangula. So far I have not been able to find it online.

1 comment:

Starlene @ GAPSDietJourney.com said...

The stabbing pains would have scared me too but like you if I had gone right back to sleep I would have figured everything was okay. I hope the Alinia does its job and I hope you are okay on the Naturethroid and don't get the rT3 problem again. It sounds like Dr. D at least has answers for your questions, so that has to be reassuring for you.