April 2012 Update

It's been almost two weeks since I got back from Seattle and I have seen some good changes. Dr. D added Custom Probiotics 11-Strain Formula to my treatment plan since I still had some and she says they are good probiotics. For a long time I could not tolerate any CP at all but now I am up to 1/4 of the adult dose a day, in addition to various ferments including Kombucha, plus Pro Calm, Acidophilus, and Supernatant. Just a few months ago I could barely tolerate a drop of Sauerkraut brine so that's a definite improvement.

Last week I had several days where I felt joy. There was no dark, gloomy feeling and I was able to just enjoy the day, be happy, and have fun, despite all the other nasty symptoms, including the daily, and very uncomfortable abdominal distention. For the longest time I felt that the negativity was out of my control and having those days where I didn't have to try or work very hard to think positive was proof that I am right.

On the days I felt more joy I also had more energy. I even did a mini-workout on a few days in addition to cleaning the house. That is a HUGE improvement for me and I am so looking forward to when I can work out on a regular basis again.

A few days before I went to Seattle I had started taking Ivermectin and Pyrentel Pamaote. On those two anti-parasitics I felt that I was even hungrier than before and I was craving sweets again. Luckily I am done with those and have been taking Albenza for three days now. The second day on Albenza I started getting a headache, yesterday it was worse than the day before and I also started feeling like I was getting a sore throat and an earache. This morning the headache is improved, but the throat pain and earache, mostly on the left side, are still there. I also have a runny nose and my teeth are sensitive to hot and cold only on the left side.

Shortly before ending my fast I started getting chest pain on the left side and my arms hurt sort of like they did after the blood donation last year. The pain wasn't bad but I was a bit concerned thinking it might be an issue with my heart. I had called CMC and since Dr. D was out I ended up talking to Dr. Z. She ordered a CMP and CBC and also asked me to get a stress EKG. I got the blood tests the next day and my electrolytes were fine. I still haven't gotten the stress EKG, but once I started eating, the chest pain improved and some days it even went away.

Monday and Tuesday this week I didn't get to eat all day and by mid-day the chest pain was back and worse than before. When I finally got to eat something in the evening the pain would go away after one or two hours. Dr. D thinks it's Babesia and not my heart itself (but she still wants me to get the stress EKG just to make sure) and said that it's very common with people who have Babs. The fact that it improved when I broke the fast and ate something those two nights also makes me think it's Babs/die off but like Dr. D I want to make sure that my heart is ok. I went to see a cardiologist on Monday and they had initially told me that they could probably do the stress EKG the next day, but they had to do a pre-cert with my insurance company first. So they had scheduled me for today but I never did hear back regarding my insurance coverage so I re-scheduled the stress EKG for 05.09.2012 since I am heading to Orlando tomorrow.

DH is at a conference in Orlando (since last Sunday) and we are meeting at the airport tomorrow. We are taking a shuttle down to Cocoa Beach and Sunday we are getting on a 7-Night Western Caribbean Cruise to celebrate our 10th anniversary. I am looking forward to it but I am also hoping the die off from Albenza and all the other stuff I am taking will subside a bit before I leave tomorrow or at least before we leave Sunday.

Our friend L is staying with the dogs while we are gone which I much prefer over them going to a kennel. Unfortunately Mojo is not doing so well this week. What seemed like just constipation turned out to be an infected and swollen anal gland. I took him to the vet Monday and Dr. McCormick drained it and put him on antibiotics. It was awful....poor baby was in so much pain and it broke my heart to see him hurting so much. Dr. McCormick said infected anal glands respond really well to abx treatment and that he should be back to normal by the time I go on vacation. Well, he's not back to normal. Right after the vet appointment he was finally able to move his bowels several times, and since then he has been back to having a hard time. I have been giving him the antibiotics, I increased his NuVet Pet tablets to strengthen his immune system, and yesterday I did several warm compresses, but just like before he tries very hard to have a bowel movement but nothing happens. I called the vet yesterday and they suggested that I bring him back in today. I was really hoping he didn't have to go back to the vet again and I am praying that he doesn't have to go through the same thing as he did last Monday. I am also worried about going on vacation tomorrow with him not feeling well. Praying that today will be a pain-free vet visit for Mojo and that he will be feeling great by the time I leave tomorrow.

GAPS Re-Intro: Day 2

I took a tiny amount of Nystatin yesterday as well as 1 drop of fermented carrot brine. I can't say I feel great today but no increased headache or other die off symptoms either. That's good...I am more hopeful.

It's only been one day and I am already tired of boiled meat. It just does not taste good to me. Yesterday I had boiled salmon and boiled chicken thighs. I admit though that I sauteed the skin of both in a cast iron skillet and some tallow. There is no way I can eat boiled fish or chicken skin and I didn't feel like pureeing it into my broth. Today I am having boiled chicken breast (it's skinless) and a ton of tallow. I will try a little bit more Nystatin but will keep the fermented carrot brine at 1 drop. It seems crazy that such a small amount could potentially cause die off.

The pain in my right wrist, knuckles, and fingers continues. I am not sure if I hurt my wrist somehow without noticing and the pain is radiating to my hand or if this is arthritic type pain. I hope it's not the latter. Dr. Cowan ordered some blood tests and among them he is checking for rheumatoid arthritis and also for mycoplasma pneumoniae. I have had the latter in the past and he wants to see if there's a lingering infection.

GAPS Re-Intro: Day 1

I was going to start over once again with GAPS Intro today. Unfortunately my day started crappy like so many days. I woke up with a headache and backache, tired, tachycardia (up to 137), fluid retention, and I had abdominal distention from the start before eating or drinking anything. Drinking coffee made it worse - this could be "PMS" or rather hormonal. It's too hard to tell these days but I hate it.

In my last email to Dr. Cowan I asked him to address the abdominal distention. His reply was that it's probably just "bad gut ecology but we can try a course of Nystatin". So this is about the 4th or 5th person who is indicating that I have fungal overgrowth. Maybe God is trying to tell me something!!!

I told Dr. C that Nystatin gives me the same symptoms as I get from probees and ferments - headache, backache, fatigue, anger, constipation, etc. I assumed those were die off but during our last phone consult he indicated that I probably just don't tolerate those strains of bacteria. That doesn't really make sense to me especially since I am getting the same symptoms from coconut oil, palm oil, GSE, oil of oregano, Nystatin, and other anti-fungals and anti-bacterials. I still think it's wicked die off what I didn't understand is why it just won't stop, then I started reading Dr. Myhill's free E-book on CFS. According to her research CFS is caused by mitochondrial failure. Mitochondria supply energy to all the cells in our body and if mitochondria fail all organs are affected and everything slows down. It can even lead to POTS which is something I have been dealing with as well. Reading her book was like reading about myself. I finally had an explanation for all the weird symptoms I seem to be having, including the fact that I am SO toxic despite a clean diet and clean lifestyle. Since all organs are affected in mitochondrial failure that means your skin is affected. In the book it states if micro-circulation to the skin is shut down, the body cannot detox. It also explains heat intolerance, something else I have been dealing with, because the skin is responsible for controlling the temperature of the body. When the blood supply to the skin is shut off, the body cannot loose heat through the skin and the core body temperature rises.

Dr. Myhill recommends a Stone Age Diet, 9 hours of sleep every night, plenty of rest and pacing oneself, and a supplement regimen for people with CFS/mitochondrial failure. Some of the supplements I already take, some I can't get here (she is in the UK), and some key supplements (d-ribose, l-carnatine, CoQ10, and niacin) I ordered and they should get here Friday. I am hopeful yet I am afraid to be hopeful.

Back to GAPS Intro - so I was going to start over today but I am wondering what the point is. I mean, I am still on Stage 2 minus egg whites/gee/butter. Of course as usual, the perfectionist in me wants to do it right, go through the stages, add one thing at a time, etc. I am not sure what to do and I am also torn about adding ferments back in - maybe one drop at a time - and now also adding Nystatin. Dr. C said to start with a pinch and work my way up. I was thinking about using the baby scoop from my Custom Probiotics. That's about 1/16 of a teaspoon or less which is a small dose.

I am trying to find joy, be happy, and enjoy life but it's not easy right now. I feel overwhelmed with all these symptoms and the fact that it seems impossible to find a good doctor - one that will truly listen, take his/her time, not just blow me off because I take Cytomel for hypothyroidism, or look at me like I am insane when I mention some of my symptoms. 

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.

Going Back on GAPS Intro

I have been vacillating between starting intro tomorrow, with a group of people, or starting on 4/24 when Bob goes to Orlando for 2 weeks. After eating some almond flour shortbread yesterday I decided to start tomorrow. It seems when I am not on some sort of plan, I have a tendency to slip more. I know almonds are GAPS legal, but every time I try to eat nuts they just set me back.

The reason I wanted to wait to start intro on 4/24 is that I won't be able to have grilled meats for a while since the first and second stage only allow boiled meats (boring). However, it won't kill me to eat boiled meats for a little while although Bob will be eating grilled meats. I will start intro with meats/fats only plus broth of course and fermented veggie juice - IF I can tolerate it. If that goes well I will start reducing protein and adding cooked veggies. Of course I am afraid to leave the ZC world, but I just have no desire to continue eating nothing but meat and fat and certainly not the rest of my life.

Here's the frustrating part and I pray this will change during intro, I feel like I am in perpetual die off. I mean, you are supposed to get die off when you add probees and or ferments but then it's supposed to let up and you increase probees and ferments. With me it seems that I can still only tolerate tiny amounts of probees and even those cause a pretty bad headache and backache. How am I going to move forward if the die off doesn't go away? It's mind boggling and utterly frustrating and I am so tired of it. After 5 to 6 days of a headache and back pain I need a break. So yesterday I did not take any probees at all and while I don't feel quite as achy this morning, the headache is still there. WTH???

On a more positive note, I found two recipes that Bob really likes. One was Bacon Wrapped Salmon Cakes and the other one was Salisbury Steak. I was really surprised that he liked the salmon cakes since he is not crazy about fish, but he even went back for seconds. I made some of them with jalapenos instead of asparagus which was good as well. I also omitted the nuts and parmesan cheese, and used two eggs instead of one egg white so that I could eat them.

I need to experiment and come up with some of my own recipes.

Day 2 (this time around)

I feel slightly better today - not so hungry, no cravings, etc. I backed way off on fermented veggie juice yesterday and skipped the bottled probiotics altogether. I hope to add things back in slowly. That's usually what I plan on doing but then I go overboard. Hopefully this time I will stick to it.

No pain today when I woke up but around 8 AM I started getting a headache. It's that weird, piercing pain on the right side of my forehead. Not sure what that's all about but it's tolerable. Then there's the bloating/abdominal distention of course. Once that goes away I know I am well on my way to being 100% healthy again.

Day 1 (for the 2,357th time)

Fell off the wagon again yesterday and paying for it today. This time it was the nut butter bars I made for Bob. I figured since they have Splenda in them I would be able to stay away from them, knowing what Splenda does to me. Nope! Ended up c/sing after lunch and after dinner then, as usual, totally regretting it. I didn't feel too bad when I woke up today but around 10 AM the oh so familiar headache, upper backache, and lower backache set in. Haven't gone away yet!

So far today has been good as far as eating is concerned. I had lamb and shrimp for lunch and will have the same for dinner. Our friend and petsitter L. is coming over for dinner tonight. We are grilling jalapeno stuffed shrimp wrapped in bacon, ribeye steaks, and some lamb steaks for me.  L. is bringing a tossed salad and I am making haricot vertes sauteed in butter with spices I brought from Germany. The salad and haricot vertes are for L. and Bob. I am still doing ZC with fermented veggie juice.

Speaking of fermented veggies, I just started another batch of Sauerkraut. I have one batch that has been in the fridge for about two weeks now. In another 4 or 5 days I should be done with the juice from my fermented carrots and by that time the SK in the fridge should be perfect. I am planning on always having a batch in the fridge ready to go. It's just better if you put it in the fridge for 2 to 4 weeks after you are done fermenting it at room temperature.

Another Day 1

How many times am I going to start over? I *just* want to eat ZC with fermented veggies juice and be strict but for some reason I have been falling off the wagon. Yesterday started out pretty good (except for the horrible headache and backache!) and then throughout the day the cravings and insane hunger set in. I think it was the coconut milk kefir but I am not sure. That stuff is so good that I had a hard time stopping. I meant to eat a spoonful and ended up eating almost a whole cup. Then I ate more later. I noticed myself getting angry, craving sweets, and just wanting to eat, eat, eat. Eventually I gave in and was c/sing with the remaining coconut milk kefir mixed with flax seed meal and sweet 'n' low, and almond/coconut butter. I just wanted to get the rest of the coconut milk kefir out of the house but didn't want to eat even more. I was worried about eating too many calories and weight gain. I should have given it to the dogs but I was in that ED insanity at that point.

Today is a new day but it's not necessarily an easy day. I also measured my thighs yesterday and have gained 0.39 inches since about a week ago - actually, since last Saturday. That really frustrated me as well. I do think I have some fluid retention right now from die off, something I am eating, or from PMS. Not sure...I could be totally wrong, too, and it's simply weight gain. But that much in 5 days? How does that happen?

I do realize the insanity of all of this, the vicious cycle, trying just "one bite" then going overboard, deciding to *fast* (which is really starving myself due to fear of weight gain), deciding to eat less, giving in, feeling guilty, etc.  If I didn't worry so much about gaining weight AND if I didn't have such an unrealistic view of myself, then doing GAPS would be a lot easier. I would go back to eating veggies since I am really not enjoying ZC. I get bored with the same taste and consistency over and over.

So I am *fasting* today. Whatever! Bob is going to see his dad so I will be here by myself all day. That could be good or bad. Sometimes I do great all day and then cave in the evening. Being hungry doesn't help. I also plan on going to Trader Joe's to get more coconut water to make kefir (don't like the taste so I don't go overboard like I do with coconut milk kefir) and I am already thinking about their almond/flax butter. Man I love that stuff but I will do my best not to even buy it. I should also get rid of the remaining almonds, flax seed meal, and homemade almond/coco butter I have in the pantry, but I have been using them to make stuff for Bob.

I hate to be negative but life SUCKS right now!

More Die Off

I am not sure what the die off is from, but it's kicking my butt today. Plus I did not get much sleep last night because of that stupid bird outside our bedroom window. Woke up with a headache, upper backache, lower backache, and pain shooting down my thighs. That lasted most of the day. I am worn out, brain-foggy, and tired. I feel like I could go to sleep right now and it's only 6 PM.

I have also been very hungry again today which must be die off as well. I was going to cut back on ferments but one bite of the coconut milk kefir and I was a goner. Now I have had probably a whole cup and I may pay for that tomorrow. It's just so incredibly good.