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.

GAPS Intro #7: Day 1

Symptoms this morning: Headache, upper backache, anger, heart rate up to 120s, dizzy, weak, distended abdomen, puffy face, right eye lid slightly swollen, not fully cognitive, and stiff body.

The headache and backache seemed worse this morning when I first got up (around 5 AM) but seem to be going away now. I went back on the Berberine and GSE Supplement yesterday starting with half of a capsule. Hopefully the die off won't be too bad and I can start increasing the dose. Mom got the Pro-Symbioflor, Symbioflor-1, and Symbioflor-2 for me and mailed them Tuesday. I hope to get them early next week and will start with Pro-Symbioflor first. Maybe with all of this I will then be able to start adding other probiotics and ferments again. I do believe that re-balancing my gut flora is going to be key to healing.

My current theory is that whatever is going on in my gut is causing my RT3 to go too high when I go back to T4/T3 medication like Armour or Naturethroid. Taking Cytomel helps reverse this but causes tachycardia because it is too much of a strain due to the autonomic dysfunction (POTS) which could quite possibly be connected to the gut dysbiosis as well. If I fix my gut I will be able to go back on T4/T3 medication which will resolve the POTS issues. The reason the gut issues have not resolved on GAPS is because whatever is overgrowing in my gut has morphed and learned to live on whatever I am eating - even meat and fat. Therefore adding the supplement mentioned above will knock down the level of candida or whatever it is, the Symbioflor products will strengthen my immune system, and that combined with GAPS intro will eventually allow me to add other probees and ferments. I hope I am right about this because I am still a little bit hopeful that I will have a normal stomach, better digestion, and more energy by the time we go on vacation in November.

Not sure yet what I am eating today. It depends on what we are doing today and whether DH is going to see his dad or not, but I am thinking boiled salmon, fish broth with Great Lakes Gelatin, and lots of pork fat or tallow.

Update:

I had fish broth, gelatin, boiled salmon, and lard for lunch and dinner. Started getting a slightly stuffy nose mid-afternoon and now (8 PMish) I feel like I am getting a slight ear ache. This is a typical die off symptom for me. Headache and backache eventually went away. Abdominal distention is awful now that I have eaten two meals.

GAPS Re-Intro: Day 3

Woke up with the usual symptoms (headache, right eye lid swollen, tired, not really cognitive, heart racing, etc.) but overall not too bad. Sounds like an oxymoron, doesn't it?!

Anyway, sometime after lunch I started to get a headache and felt really tired and out of it. I thought the Nystatin increase yesterday (from 1/16 tsp to 1/8 tsp) must have done it but around 2:30 PM I realized I hadn't taken my mid-day dose of 7.5 mg hydrocortisone. Since it was a bit late already I took 5 mg then and within half an hour the headache was almost gone. That's good but the pain in my right wrist and knuckles continues and it flared up in my left wrist as well until I took the HC around 2:30 PM.

I went to the lab this morning to get blood drawn. Can't wait to see what the RA factor and ANA indicate. If the pain in my wrist is RA then the RA factor should be elevated - at least you would think it would be. What is odd though is that the pain started sometime after the blood donation and low blood volume. I don't understand it and Dr. Cowan didn't have a possible explanation either.

I also had a free 15-minute consultation with Chris Kresser yesterday. I had read some of the articles on his blog and like them. In addition, at least one couple from the GAPS Yahoo group is consulting with him. After listening to my chief complaints he feels I have parasites. Since I have done several herbal parasite cleanses and my diet is extremely strict and limited, he suggested I take medication for them and then rebuild gut flora once the parasites are gone. He said since he can't prescribe medication he can't really help me right now but would be happy to consult with me after I am done with the meds (should I decide to take them). Incidentally I had just ordered another stool test kit from Parasitology Center Inc. the day before. Chris likes Metametrix for parasite testing and that's who I did the last stool test with. However, I was told that this place is even better. Chris also felt that the difficulty I am having taking probees and ferments could be an indication of parasitic infection since parasite can feed off of them.

I really didn't want to do more tests (or spend more money on tests), but I am desperate to feel better. Right now I am not living. I am merely making it through the day as best as possible and there is no joy in that. I am praying that Dr. Amin from the Parasitology Center Inc. will find something IF there is something to be found which needs to be addressed. As much as I hate taking medication, I probably will give it a try considering that everything else I have tried has not worked.

Slowly Figuring Things Out

I skipped the SR potassium yesterday and it seems my heart rate is not quite as high this morning. I find that odd since potassium is supposed to help with tachycardia, but there it is. Diane from the adrenal/thyroid Yahoo group recommended staying off of it for one week, taking in at least 2 tsp of sea salt a day, then adding it back in and retesting after 3 weeks.

My trip to Austin is not happening this week. I couldn't find a free flight with decent dates. I could have left Wednesday and come back Sunday, but we are supposed to have wicked thunderstorms this Wednesday and I can't leave Mojo all day. This is so crazy. We really need to figure something out regarding Mojo's fear of thunderstorms. I cannot re-arrange my entire day because of him every time there's a thunderstorm.

Anyway, looks like I am re-starting intro TODAY. I think I am just not going to worry too much about boiling meat for every meal and will focus on getting some of the ferments in. Incidentally there are messages going around on the GAPS Yahoo group regarding using fermented foods only and no commercial probees. I guess it's worth a try. I have Beet Kvass, fermented carrot ginger brine, and sauerkraut brine in little dropper bottles so I will start with one drop a day. It seems ridiculous to start with such a small amount but hey - whatever it takes. I did eat 3 medium sized water kefir grains yesterday and I have a headache and backache this morning, feel worn out, swollen eye lids, etc. - all the usual die off symptoms. A friend from GAPS had an interesting theory about me feeling worse. She said the following, referring to the blood donation:

"I think something happened in your system- maybe by concentrating your blood and getting rid of extra iron storage- it got some critters out of hiding since critters love love feasting on iron and now they are on the surface causing you misery and you are flaring.  I think the way we define flare for every individual body is withing a given context to that specific body.  Knowing you after all this time- this is one of the ways you flare."

See, I think this makes sense and is very possible but I know if I say something like this to Dr. Cowan he will think I am nuts. I never did have my appointment with him yesterday. Apparently he was out sick so it was rescheduled for tomorrow.  

I did get my blood test results from last week yesterday. My iron is slightly higher but ferritin has dropped from 75 to 44, RBC, hematocrit, and hemoglobin are back to normal but at the low and of the range, sodium and potassium are both still low normal. I noticed that my WBC was 5.2 the day I went to the ER and now it's back to 3.8 which is too low. I do wonder why my WBC fluctuates so much.

GAPS Intro: Day 6

Not much to report really. I am dealing with quite a bit of die off, my heart rate seems higher again and I don't know why, and I am still on stage 1 except that I ate grilled meat last night. I also started the supplement last night that Dr. NCM recommended. In addition, I am thinking about adding Interfase Plus back in. I took it last year for a while and was starting to see improvements. Then I stopped taking it, got strep, then scarlet fever, and things have just been rough since then. I may order it today and start taking a small dose in the AM. Maybe the combo of Interfase Plus, the Berberine/GSE supp, and increasing probees and ferments slowly will finally show some improvements.

I mowed the yard yesterday and I had barely started the backyard (which is a PAIN to mow due to the slope and uneven soil) when the new, self-propelled mower stopped working. I could not get it to start back up. My guess is that it was just overheated and I should have waited a while but instead I finished the backyard with the old push-mower. What a pain that was and I am feeling it today. I probably won't be doing much the rest of the day although it's so nice outside it's a shame to sit inside.

GAPS Intro: Day 3

I took no probees or ferments at all yesterday yet I still had a slight headache and backache when I woke up. Other symptoms - right eye lids swollen, tired, fatigued, not really cognitive until the hydrocortisone kicks in, and my heart rate was still high. Actually, it went all the way up to 152 as I was standing in the kitchen waiting on my coffee. I am thinking it's safe to say that it's not from die off and I need to reduce Cytomel even more (I went from 87.5 mcg Cytomel back in January to now 37.5 mcg Cytomel and 1 Grain Naturethroid).

Last Sunday when I woke up my heart rate was hovering around 89 which was the lowest it has been in a long time. It felt so good. No dizziness when standing or feeling like I need to sit down. I had reduced from 50 mcg Cytomel to 37.5 mcg the day before. That day I went back up and since then it's been pretty high again. Going back down to 37.5 mcg has not done the trick so maybe the T3 started pooling in my blood. I really don't know - it's all speculation. I am thinking about just taking the 1 Grain of Naturethroid today and no Cytomel at all to let the T3 clear, then going back to 37.5 mcg Cytomel with Naturethroid tomorrow.

I am crazy hungry, too, and I don't know if that's from die off or too much T3. In addition, I am feeling very warm, my temperature went up to 99.3 after eating lunch yesterday, I sweat at night, and I am waking at lot during the night. All that seems like too much T3.

Food today is Mahi Mahi boiled in water. I will drink the resulting broth and will add some pork gelatin since there are no bones in the fish and I normally have bone broth. I will add pork fat to the fish. I think I will go back to taking my probees today (L. reuteri, Symbioflor2, Custom Probiotics 11-Strain Formula) and skipping the fermented veggie juice. I know the latter is very important but the die off yesterday was brutal. If that works out ok then I may go back to adding the fermented veggie juice but a smaller amount - maybe 1/8 tsp instead of 1/2 tsp.