Wednesday, June 27, 2012

31 Days of Prayer

For a while now I have felt that I need to do something about my prayer life. I pray every day - for friends and family, the members of my online prayer group, my dogs, etc., but it's not focused or conscious prayer. I pray while I am driving in the car, doing laundry, or cleaning the house. Not that there is anything wrong with that, prayer is prayer, but I personally feel that I need to do more. Or maybe it's God nudging me to do more. Whatever it is, I have this feeling that I need to be on my knees, crying out to God. Sometimes I can see myself doing so, but then I don't actually go do it.

I also just started following Leigh Ann over at Intentional by Grace and watched the video about the "Surrendered Marriage" series they are doing. In it she mentioned the book "31 Days to Build a Better Spouse" and since I want to be more intentional about my prayers for DH as well, I went ahead and purchased it.

Some of you might think this book is about changing my husband into the person *I* think he should be, but that's not what it's about at all. Actually, from what I have seen so far just reading the first page (day 1) and skimming through it, the book is about knowing and praying *God's* will for your spouse.

Thursday, June 21, 2012

Third Follow-Up Appointment with Dr. D June 2012

A few days ago I got a newsletter from Scott of Better Health Guy. He always has great information but the one link that was of most interest to me was to his bullet points from the Physician's Round Table 2012. All the information from these conferences is just fascinating and as usual, I am most impressed with the information presented by Dr. Klinghardt. He is such a brilliant man and I am excited that I will hopefully still get to see him in September this year. He is leaving CMC and opening his own practice with 4 other NDs from CMC, but they will try to give priority to patients who already had an appointment set up with him at.

What also stood out to me in the Physician's Round Table was Dr. Fry's work and findings regarding a protozoa called Protomyxzoa Rheumatica (or FL1953). Rather than repeating what Dr. Fry presented, here are a few bullet points from the Physician's Round Table that really stood out to me.
  • Protozoans love lipids (fats).  The McDougall diet is used as part of treatment.  Doxycycline and tetracyclines may target the fatty acid synthesis machinery.
  • Toxoplasmosis is also dependent on fats.
  • Protomyxzoa grows 100 times faster with fats than without.
  • There is a reduction in relative biofilms with the McDougall diet.
  • In some people where they had seen the organism and biofilms, they could not find the organism after being on the McDougall diet.  Unfortunately, after starting to eat higher fat content, the microbe was again present and visible.
  • They did a test in people with Protomyxzoa using a 12.5 day water fast and levels of Protomyxzoa dropped to undetectable.  Within 2 days of eating again, it was back.
  • Protomyxzoa is found in CFS, Fibromyalgia, Rheumatoid Arthritis, Lupus, Crohn’s, MS, Parkinson’s, ALS, Autism, Scleroderma, and others.
  • Protomyxzoa is Public Enemy #1.
  • Protomyxzoa loves fat.  It is complex.  It is drug-resistant.
I love fat, crave it actually, and quite often we crave what the critters in our gut like and thrive on. I feel better when I fast and then go downhill when I start eating again. I eat a high fat diet. In addition, my health really started to decline after I got bitten by a butt load of mosquitoes during a trip to Cozumel in 2008. Considering all this I decided to schedule an appointment with Dr. D to see if she felt it was worth it to get tested for this parasite. It's a blood test done by Fry Labs and costs a "mere" $399! There were also a few other things I wanted to discuss.

So below is what I asked her and her responses. Keep in mind that I can't write as fast as she talks and I may have gotten some of this slightly wrong. But here is what I got.

  1. Could FL1953 be an issue for me and is it worth it to run the test?

    They assume that every patient has it and treat accordingly. She herself has talked to Dr. Fry about this and so has Dr. Klinghardt. When they first discussed it Dr. Klinghardt was very much into putting their patients on an ultra low fat diet as suggested but they all went downhill and felt horrible. The body needs fat to make hormones [I already knew this and was concerned about it]  and I would most likely gain weight due to hormone deficiencies and also because a low fat diet leads to a high carb diet. Eating a high carb diet can make you gain weight especially since my blood sugar already runs high on a low carb diet.

    They have other/more effective ways of breaking up biofilm with enzymes, clay, and cistus tea and addressing the parasite like with Tri-Quench and Allicin in an inhaler [I already do this] and retention enemas with freeze dried garlic and artemisinin [I do this as well].

    She said she is more than happy to order the blood test for me but didn't think it was necessary.
  2. I had noticed my vitamin D3 was down to 55 this last time and asked how much I should be using

    4,000 to 6,000 IU daily.
  3. Could KPU be cause of bloating/distention?

    It's possible but she mentioned Claritin again and said to try it daily for at least a week to see if it makes a difference.
  4. I asked if Cryotherapy really is as effective as I have been hearing.

    She said that hot cold therapy can be effective always starting with warm first, then using cold for no more than 30 seconds like in the shower. However, she said she has not seen enough research by people she trusts to be convinced that longer cold therapy is effective or good for chronically ill people.
  5. I asked about making an appointment with Dr. Klinghardt at the new location since I had already had one set up for September at CMC.

    Dr. D gave me a link where I could send an email to let them know that I was an established patient at CMC and was scheduled to see Dr. K in September. She said established patients will be given priority but Dr. K will only be in the US for 15 days in September. She said they will try their best to schedule me during that time. They will first be in a temporary location while their new/permanent location is being built. [I did not ask her the exact location of those two places.]
So now I am torn about what to do. I want to trust the process and believe that I am on the right path, at the same time I would like to know for sure whether I have this parasite or not. The question is, would I change anything if I do have it? Would I try a low fat diet just to see if I do ok on it? I am not sure what I would to be honest and the $399 for the test would be a lot of food or supplements!

Friday, June 15, 2012

Second Follw-Up Appointment with Dr. D June 2012

I just had another phone consult with Dr. D. She had ordered some blood tests and I wanted to discuss the results (link to result below), plus there were some other issues I wanted to talk about. Below are my questions/comments and her responses.

  1. The abdominal distention I am dealing with is really bad still and starting to bother me more and more physically and emotionally.

    She would like to try Claritin to see if it will help and said to take it as directed. This is a problem in people with high histamine, but even more so in people with low histamine (like me) because the smallest amount of histamine in the body causes an extreme reaction. She said since I react to everything I eat, not just certain foods, this might help.
  2. I asked about the importance of getting rid of our wireless internet. I already turn it off at night, or at least most nights, but I know that Dr. Klinghardt is pretty adamant about getting rid of it completely.

    She feels as long as I turn it off at night that's sufficient. She also suggested turning off the fuses to our bedroom at night and getting YSHIELD paint. Apparently it is best to paint the entire outside of the house with this paint, but since it is very costly she said painting the inside of the bedroom will be ok.
  3. I noticed on my blood test that my estrogen is now at a good level, but progesterone is barely existing. My concern was that the testosterone I use is converting to estrogen.

    It's possible that testosterone is converting but estrogen is at a good level so that's ok. Progesterone is definitely too low and she wants me to increase to 100 mg of progesterone cream (from 30 to 40 mg) and we will re-test in 3 months.
  4. I mentioned that I get depressed/frustrated/negative somewhat cyclically and also gain weight every 2 to 3 weeks for no apparent reason. I go along doing ok, feeling positive, dealing with all these symptoms and then from one minute to the next I am in this dark place and I gain 3 to 4 pounds in a matter of two days.

    She thinks this is due parasites since they have cycles and not hormones which I suspected. She would like me to take another course of Albenza but this time take half the dose (200 mg twice a day) and also add Sporanox 100 mg once a day for possible fungal overgrowth. A lot of my symptoms do still sound like they could be fungal.
  5. The colon hydrotherapist had offered to barter for colonics and told me that I could continue getting two colonics back to back. Although I am going back on parasite treatment I asked if that's too much.

    Two colonics back to back per week are ok as long as I feel they are helping even if I am not doing parasite treatment.
  6. I asked about my thryoid test results and mentioned that I have been losing more hair since lowering my dose.

    She feels that FT3 is still too high and that the hair loss could be fungal. She would like me to lower T3 a bit more and take Sporanox as mentioned above.
  7. One of the things she put me on when I was there in April was Mimosa Pudica. I am to take 1/2 teaspoon a day, starting with two days a week, and working up to five days a week. I mentioned that I am having a hard time with it in that is causes horrible cravings for sweets and a huge appetite.

    Dr. Dahlgren said to reduce the dose by half and also said that one of her patients takes 1/16th of a teaspoon a day because she is so sensitive to it. I can do that as well if that works better for me.
Last but not least, both Dr. Dahlgren and Dr. Klinghardt, as well as a few other doctors, are leaving the Comprehensive Medical Center and opening their own practice. I had already heard that Dr. Klinghardt was leaving and yesterday was told that Dr. Dahlgren is leaving as well. I was told she will be leaving end of June and they didn't know when the new practice would open. That scared me a little since these phone consults really help me. However, Dr. D said as of right now they are staying through July and opening the new practice in August.

Monday, June 11, 2012

Red Wine Cake

I have been trying to turn "normal" recipes into Paleo and/or GAPS friendly recipes. Red Wine cake is a typical German cake that my mom used to make all the time and I did as well when I was still eating grains. Here is my Paleo/GAPSish version

what you need:
  • 6 eggs
  • 1/2 cup unsalted butter or coconut oil, melted
  • 1/4 cup honey
  • 1/2 cup red wine
  • 1/2 cup coconut flour
  • 1/4 cup ground hazelnuts
  • 1.5 tablespoons cocoa powder
  • 1/2 teaspoon baking powder or baking soda
  • 1/2 teaspoon cinnamon
what you do:
Mix all ingredients in an Omniblend or other high  powered blender or with an electric mixer. Grease a loaf pan, pour batter in, and bake in 350 degree pre-heated oven for 30 to 40 minutes.

It didn't taste like the "real" red wine cake I used to make, but it had a nice flavor. A little frosting of some sort would make it even better.

Guten Appetit!

This post is shared on Monday Mania, Fat Tuesday, Allergy Free Wednesday, and GAPS Friendly Fridays.

Mojo Update 06.11.2012

As I mentioned in my last update about Mojo, we were hoping that he was back in remission. Unfortunately we noticed two small lumps in his throat about 10 days ago. At that point they were roughly the size of an almond and we also noticed a slightly bigger lump in his right, rear leg. I took him back to see Dr. Johnson at bluepearl last week Monday and he got a round of L-spar and one round of Vincristine. Dr. Johnson said to keep checking him and after two days let her know whether the swelling had gone down. She also said that she would like to try oral meds next depending on his response to the chemo. It would be the same tablets he got every so often during the 6-month chemo treatment (Cyclophosphamide I think), but they would calculate his dose based on weight, divide that by 30, and we would give him that dose every day for 30 days.

By Wednesday there was no change in the swelling which I let Dr. J know. She said since she couldn't do another round of chemo anyhow we could wait until today since we already had an appointment set up. The only reason to bring him in earlier would be if he started having trouble breathing.

Yesterday morning when I checked his neck I noticed that the lumps had gotten bigger. At that point they were roughly walnut sized, versus almond sized, and I felt four or five of them versus just two. Before going to bed last night I noticed that one of the "toes" on his left rear leg was swollen. This morning when I got up it was about the same and by the time I got to bluepearl it looked like this.
It's "just" edema and doesn't seem to cause him any pain or discomfort, but it hurts me to just look at it.

Dr. Johnson did an exam during the appointment and agreed that the lumps were getting bigger and that there are now more than before. We discussed treatment options going forward and she decided to give him a round of Doxorubicin today. While he was getting his chemo I ran over to Costco and found this.

How cool is that? Costco has grain free dog treats! Of course I had to buy them and took one in with me when I went back to get him. He liked them - no surprise there.
Dr. Johnson also gave him an injection of Prednisone and said to bring him back next week for a CBC. That is also when we will start the Cyclophosphamid. She already called it in, the pharmacy called me, got mine and Mojo's info, and will send it out today.

Yesterday I had a good cry about all of this and I looked rough this morning. I think Dr. J must have noticed because she said to Mojo that his "mom looks worried", which I think was a nice way of saying that I look like crap. LOL 

Anyway, I told her to tell me what she is thinking because I am going back and forth between being too negative and being too hopeful. She said that she will always be honest with me and at this point she is still hopeful. She said she is "pissed and discouraged" but has hope. According to her, if there are 100 chemo drugs, 98 of them will work so we still have options. Although they don't normally do maintenance chemo, she said Mojo may just need a little something ongoing to keep him in remission. In addition, she said as long as he looks as good as he does and is eating and "happy Mojo", which he still is, she is not worried, even with the swollen lymph nodes. It's when the swelling causes pain or discomfort that she starts to be concerned. This is one reason she wants to get she edema in his leg down because it means his lymph system is compromised and that WILL cause discomfort eventually.

Sooooooo...more prayer, more waiting, more hoping. I am actually thinking about starting another fast tomorrow, maybe 7 days this time, for my own health reasons, but would also want to use that time to really pray for him. If there is any truth to the power of prayer and fasting, then I want to give it a shot. I can't bear the thought of losing this little boy or seeing him suffer. He is so precious and sweet and special. This is him last night hoping I will drop some food while cooking. What a cute face! :)

Fermented Sweet Vidalia Onion Dressing

what you need:
  • 1 medium vidalia onion (mine weighed 9.25 ounces peeled)
  • 3/8 cup extra virgin olive oil
  • 1/4 cup kombucha
  • 1 teaspoon mustard powder
  • 1 teaspoon sea salt
  • 20 grinds black peppercorns
  • 2 gloves garlic
  • 1 tablespoon gelatin (I used Great Lakes)
what you do:
Place all ingredients in blender. I have an Omniblend but any blender will do. Blend until all ingredients are liquified and well blended. Let sit at room temperature for 5 to 6 hours then place in refrigerator. Sweet goodness without using honey or any kind of sweetener. You could use apple cider vinegar in place of Kombucha but you would need to move it to the fridge right away and it would not be fermented.

Use on salads or as a dip.

Guten Appetit!

This post is shared on Monday Mania, Make Your Own Mondays, Fat Tuesday, Whole Foods Wednesday, and GAPS Friendly Friday.

Pork Cilantro Sliders

what you need:
  • 20 oz ground pork (or any ground meat/poultry)
  • 2 to 3 small scallions
  • 1/2 to 1 bunch cilantro, stems removed
  • 1/2 - 3/4 teaspoon Celtic sea salt (I love salt so you may want to start with 1/2 teaspoon)
  • 1/4 teaspoon black pepper
  • 3/4 teaspoon Ancho chili powder
  • 1/4 teaspoon cumin powder
  • 1 jalapeno pepper (optional)
  • 2 egg yolks or 1 whole egg
  • 1 tablespoon coconut flour (optional)
what you do:
Chop scallions, cilantro leaves, and jalapeno, if used, in a mini chopper to desired size.

Mix all ingredients really well. Form sliders (small burgers - roughly 2 oz each), fry in cast iron skillet or whatever you prefer, until cooked all the way through. That's it.

I ate them with some left over cabbage I had sauteed in tallow and homemade sauerkraut. However, I bet they would go great with with Cuban Style "Rice" or on Grain-Free Hamburger Buns. You could also make them smaller, stick a toothpick in them, and serve as an appetizer with some kind of sauce.

Guten Appetit!

This post is shared on Monday Mania, Fat Tuesday, Gluten-Free Wednesday, What's Cooking Wednesday, Real Food Wednesday, GAPS Friendly Friday, and Allergy Free Wednesday.

Follow-Up 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.

Saturday, June 2, 2012

Thyme/Rosemary Stuffed Chicken with Herb Butter

what you need:
  • 1 chicken (ideally pasture raised aka the real cage free)
  • 2 - 3 sprigs thyme
  • 2 - 3 sprigs rosemary
  • 1 medium onion
  • salt, pepper, paprika to taste
  • tallow or other fat of choice
what you do:
If you are using a pasture raised chicken let it sit in a salt brine for 5 to 6 hours before baking. Here's a guide to "brining" poultry (just don't use regular table salt - I used Celtic sea salt). The chicken will be more tender that way. Preheat oven to 250 degrees Fahrenheit. Melt some tallow in a cast iron skillet or other skillet/dish large enough to hold the entire chicken. Wash and rinse the chicken, dry, and place in the skillet. Brush chicken with melted tallow or whatever fat you used.

Season with spices then stuff vegetables and herbs inside chicken cavity. I also like to throw some onion and herbs in the skillet next to the chicken. It makes for some tasty grease when the chicken is done. Place chicken in skillet breast down (makes the juices "flow" down to the breast making it more tender).

Chicken Bootie
Cover chicken and bake at 250 degrees for 2 to 3 hours. Increase oven temp to 400 degrees and bake another 30 minutes uncovered or until temperature of thighs is 170 degrees and breast 160 degrees. You will end up with a flavorful, juicy, tender chicken with crispy skin.

Herb Butter
what you need:
  • 1 stick (1/4 lb) butter (I used Kerrygold salted)
  • 1/2 teaspoon garlic powder
  • 1/2 teaspoon dried garlic
  • 1 small shallot
what you do:
Let butter sit at room temperature until soft or heat on low heat just until it softens. You don't want the butter to be liquid because the herbs and spices will just sink to the bottom rather than mix with the butter.

Cut shallot into small pieces and press through a garlic press. Mix all ingredients and place in refrigerator until it reaches desired consistency. I like my butter room temperature. 

I served the chicken with pureed zucchini.

Guten Appetit!