Saturday, April 28, 2012

Cocoa Beach, FL and a Mojo Update

By the time I got to Orlando last night I was exhausted. We took a shuttle down to Cocoa Beach, checked into the hotel and walked across the street to the Cocoa Beach Pier to grab some dinner. After a small glass of white wine (happy hour special was half off all alcoholic beverages and the wine glass was about half the size of a regular one!) I finally relaxed a bit. Dinner wasn't anything amazing - all the restaurants at this pier are owned by the same owner and they have one central kitchen. We split naked chicken wings, Bob had a steak, and I had a burger without the bun.

Walking back to the hotel the sunset was beautiful and Bob wanted a picture of me on the surfboard with the fake wave.


We spent the morning at the Ron Jon Resort listening to a sales pitch. In return the shuttle to and from Cocoa Beach was free, plus we got $75 cash. I thought that was a good deal.

As soon as McCormick Animal clinic opened I called to check on Mojo. Daniel, the guy taking care of the animals, was on the phone. The first thing he said is that Mojo is such a "happy dog" and when he let him out this morning he apparently walked up to everybody to greet them with "kisses" and by trying to climb on them. That's my boy! When Daniel told me this I was so relieved because it tells me that he is feeling better. Daniel also said the swelling is down a bit and Mojo seems to be feeling ok. So that was a huge relief plus we decided to go ahead and go on the cruise.


We spent the rest of the day relaxing, going for walks, shopping, and just taking it easy. Now we're going to do some laundry and spend the rest of the night in. Looking forward to getting away for a week and doing nothing but fun stuff. Our pet sitter will check on Mojo daily and will send us an email with an update. If I have to fly back I will but I am praying that Mojo will be feeling better every day now.

Friday, April 27, 2012

Update on My "Little" Boy


This is Mojo, my 10 year old Great Dane/American Bull mix who stole my heart the minute I saw him when he was about 5 months old. He is a sweet, sweet boy who has been through a lot in the last year to 15 months.

Yesterday I wrote about the trouble he has been having this week with a swollen anal gland.
Despite being on antibiotics and doing warm compresses he just wasn't getting better. While doing a warm compress yesterday morning I noticed that his left hind leg was swollen quite a bit. Within an hour it had gotten much worse. I called the vet and they told me not to do anything until I come in later to see Dr. McCormick.

Two o'clock didn't get there fast enough. His leg got even worse by the time I got to the vet. Dr. M did another rectal exam and said there's a lumbar sub-lymph node that is swollen and obstructing his rectum keeping him from moving his bowels. He said the leg swelling is edema and he felt that all of it, even the initial swollen anal gland, was due to Mojo's compromised lymph system (from lymphoma) and his immune system being run down from all the chemo. He called Blue Pearl to talk to Dr. Johnson, Mojo's oncologist, but she is out of town this week. The vet on staff that day, Dr. Holste, was in surgery so Dr. M sent me home and said he would call me when he hears back from them.

I had justgotten home when he called and said Dr. Holste would like to see Mojo and do an ultrasound. So I drove out to Blue Pearl and met with Dr. Holste. I explained what had been happening, she did a quick exam, then took him to run some tests. She said it could take two hours and she would call me when she is done. I drove to Target and wandered around but was too worried about Mojo and drove back to the clinic to wait there. She had actually just gotten done with some tests and called me in. I was not expecting to hear what she said. Mojo is out of remission, the cancer is back, and his lymph nodes from the belly down are all swollen. This is what was causing the swelling and she said eventually the other leg would swell as well. Here's a picture of what it looked like yesterday.

She said that she would like to administer L-Spar (sp?) which is the same chemo drug he got last year when we first started chemo. It made his lymph nodes go down within 12 to 24 hours. I said that was fine and went home to take care of Pepper while Mojo was at Blue Pearl. Dr. Holste had said she wanted to monitor Mojo for about 2 hours after chemo to make sure there is no anaphylactic shock from the chemo and to come back around 7:30 PM to pick him up.

I called Bob on the way home to fill him in and pretty much cried the entire time. When all this started end of last week I was not thinking cancer at all. It didn't even occur to me that what seemed like some constipation could be from him being out of remission.

The weather was getting worse and worse and as I was on my way to pick him up a tornado touched down about 5 miles south of the clinic. It was a totally crazy and horrible day all the way around.

This morning Mojo's leg was less swollen and his groin, which had gotten huge by last night, was reduced as well. He was also a bit happier but still unable to move his bowels. I took him back to see Dr. McCormick to get checked out and to discuss whether we should even go on vacation. Dr. McCormick said his leg is definitely less swollen and once the swelling goes down everywhere (including in his rectum) he should be able to have a bowel movement as well. He said he sees no reason for us to cancel the vacation. I asked what the odds are of Mojo not responding to the chemo this time and if that happens, how fast things would progress. Like Dr. Johnson he feels that he will respond well since he responded well the first time. He said if not, that he highly doubts that Mojo will go downhill so fast that they would have to put him to sleep before we get back. Of course there are no guarantees!

Bob and I decided that I would go ahead and fly out today and we’ll call the vet later today and tomorrow. If he is worse we will fly home. If he seems to be improving then we will go on the cruise. Our pet sitter will call the vet daily and send me an email with an update. Dr. McCormick also gave me his email address and said to email him directly. After he speaks with Dr. Johnson on Monday he will let me know if she suggests more treatment while we are gone and will get an ok from me via email.

I am not sure how I feel about our decision. It didn't seem necessary to cancel the vacation, but leaving Mojo there, looking at his sweet, confused face when I walked away without him, broke my heart. I cried the whole way home and between all the crying last night and this morning, and only sleeping about 4 crappy hours, I look and feel miserable. My head feels like it is going to explode, my eyes are red and burning, the heart racing has gotten much worse again, and I am emotionally and physically worn out. This is definitely not how I wanted to start a vacation and I definitely did not expect the cancer to return this fast.

Thursday, April 26, 2012

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.

Saturday, April 21, 2012

Coffee "Mousse"

I am still pretty limited with food at this point but every once in a while I want something dessert like. Nuts, honey, seeds, coconut flour, etc. are still out for me which presents a challenge. I can do butter but not too much and I am supposed to avoid egg whites but I can eat yolks. So I decided to adapt Bee's Fake Cream recipe and make a dessert out of it.

what you need:
  • 1/2 cup very hot brewed coffee (I used organic dark roast and brewed it relatively strong)
  • 1 rounded tablespoon unflavored Gelatin (I use Great Lakes)
  • 1/4 cup coconut oil (Nutiva)
  • 3 egg yolks
  • liquid stevia to taste
  • 2 cups ice cubes
what you do:
Pour hot coffee into blender. Add gelatin and blend at low speed. Add coconut oil, egg yolks, and stevia until well blended. Add ice cubes until mixture gels. With 2 cups of ice cubes it should be pretty "thick".

Monday, April 16, 2012

Slow Cooker Chicken Gizzards

I just got my new Hamilton Beach Slow Cooker in the mail last week so I wanted to try it out. Our old crock was smaller and had lead in it. This one supposedly doesn't. Let's hope that's true.

I still had a bag of chicken gizzards from Good Earth Farms and figured I use those for my first recipe in the slow cooker. I buy the gizzards mostly because I love the rendered chicken fat, but I love the gizzards themselves as well.

what you need:
  • 5 lb bag of chicken gizzards
  • 1 quart filtered water
  • 2-3 large tomatoes, cut into large chunks
  • 2 large onions, cut into large chunks
  • 3 green onions, green tops included, chopped 
  • 1/2 bunch of cilantro
  • 5 cloves of garlic, peeled and cut in half or quartered
  • 1 1/2 tablespoons cumin
  • 1 1/2 tablespoons paprika
  • 1 tablespoon chili powder
  • 2 tablespoons Celtic sea salt
  • 1 teaspoon black pepper
  • 1/2 - 1 tablespoon curry (depends on how curry-ish you like food)
  • 1/8 - 1/4 teaspoon ground cloves 
  • 1/2 tablespoon rosemary powder
  • 1/4 teaspoon thyme
what you do:
Place all ingredients in slow cooker. Turn on high until it starts bubbling, set to low and let it cook 6 to 8 hours or until chicken gizzards are tender. If you don't like mushy vegetables, add them about 20 to 30 minutes before cooking time is done. That's it. Enjoy...




ways to serve this dish:
  • as is by itself
  • with homemade sauerkraut (put the sauerkraut in the bowl with this "stew" - yum)
  • over cauliflower rice
  • over mashed fauxtatoes (regular or smoked)
  • with a salad
  • over steamed or baked sweet potatoes
This post was shared on Monday Mania, Fat Tuesday, Whole Food Wednesday, and Freaky Friday.

Saturday, April 14, 2012

Chuck, Ribs, Stew Meat, and T-Bone

I am finally back to normal amounts of food since breaking my fast last week Thursday and had the most amazing lunch today. Well, at least I thought it was amazing.

I had a slow roasted chuck roast in the freezer that I had prepared just like my slow roasted beef ribs which I took out and defrosted at 350 degrees in our toaster oven. I can't remember what I had spiced it with but it was good as is.

I also had some beef stew meat and rib meat frozen that was leftover from the last batch of beef bone broth I made. I threw it in a skillet with coconut oil and chopped onions and spiced all of it with salt, pepper, rosemary, oregano, chipotle chili pepper, chili pepper mix, and paprika.

I mixed a tiny bit of tomato paste into the beef/onion mixture above, added it to a bowl with some chuck roast and topped all of it with two fried egg yolks, and some Kerrygold butter. Yum!
I remembered to take a picture after I had eaten more than half of it.

DH ate some chuck roast as well and put the beef/onion mixture in some low carb tortillas with taco sauce and fried egg whites (I prefer yolks - he prefers whites).

Tonight we are grilling T-Bones marinated in olive oil, salt, and pepper. The T-Bones, roast, stew meat, and ribs were all from Mother Earth Meats. Love their meat/poultry.

Follow-Up Appointment Three with Dr. D in Kirkland

My last appointment with Dr. D yesterday went really well. I asked her how parasites cause someone's metabolism to slow down and she said (according to Dr. K), the parasites get all the good stuff from your food, while you are left with all the crap. She said the majority of people with parasites are actually overweight, not underweight, like most people think. I guess the way that makes sense to me is similar to when you starve yourself, constantly cutting calories, eventually the body will down regulate. Dunno if that's what she meant but I suppose that could be it.

A few weeks back I has asked her in an email if there is something I can do or take to bring my iron levels down since blood donation is out due to POTS. She replied that I could take Artemisinin so I asked her if she could muscle test me for it.

Next I got on the table and she muscle tested all of the supplements I was on from our previous visit as well as some foods. I had brought the following with me:
  • Kerrygold Butter
  • Ghee
  • Kefired Cream
  • Mayorga Organic Coffee
  • Avocado
  • Egg White
  • Egg Yolk
  • Fermented Cod Liver Oil
I tested good for all the foods except the egg white which was neutral. Incidentally I am not crazy about egg whites and they are also in the "neutral" section of the Lyme/KPU/Low Ox list she sent me.

When she told me that coffee tests good I mentioned that I will most likely switch to decaf since I am on very little caffeine now anyhow and she said to stick with regular coffee. According to Dr. D caffeine does have some benefits and decaf can have toxins, even if it's Swiss water process decaf. She said caffeine from coffee can benefit the liver and may even help to absorb my supplements better. Again, I love her!


For the past two weeks or so I had been considering increasing Naturethroid from one grain to two grains and reducing Cytomel from 75 mcg to 50 or 62.5 mcg. My body still seems to have a hard time with Cytomel and the result is more heart racing. My last FT3/RT3 ratio was 67.9 and it needs to be above 20 so I have a little bit of room for RT3 to go up. I did not mention this to Dr. D but when she muscle tested me for Naturethroid it tested really well and as possibly needing more yet when she muscle tested me for Cytomel and Cynomel it came up as sort of blocking and possibly needing less. I am afraid to make that change since I don't want to have RT3 issues again, but maybe it's the best thing to do. It sure would be nice to be off the beta blocker completely. 

Dr. Alina was in with us again for the muscle testing and once we were done they wrote everything up for me. Unfortunately I left my treatment plan at the clinic so can't really post it yet but will do so as soon as I get it. However, she did say that she wants me to start drinking Dr. K's Lyme cocktail daily which consists of water, grapefruit juice (the "recipe" called for 1/4 cup but she said I can reduce it to 1 tablespoon), Quintessence, Mimosa Pudica, Artemisinin powder, and Lipo- Health. She wants me to run this cocktail in an ultrasonic cleaner eventually and since I wanted to run my liposomal C through one anyhow I went ahead and just ordered this one. Dr. D said to start out with the cocktail just fixed in the blender and once I tolerate the full dose to run it through the ultrasonic cleaner because it can cause too much die off running it through the cleaner immediately. This cocktail is in addition to the other new items she prescribed the first two days and in addition to most of the supplements I am already on. There were a few that were blocking which I will also post when I get my treatment plan.

Dr. D said that the anti-parasitics are really good for me right now and that Alinia, the last one I am supposed to take, is going to be great IF I can tolerate it. She said the Babesia will not like Alinia at all and some patients get chest pain or tightness, nausea, vomiting and other serious symptoms. In case I have a pretty severe reaction, she gave me her email address and cell phone number and said to let her know immediately if I get any of those symptoms so we can decide together whether I should continue or not.

Going forward she wants to talk on the phone once a month and if I can, she wants me to come back in person in July. She said at that point I could see Dr. K along with her and it was up to me. I told her that I would leave it up to her and we could decide later. Her concern was that he would be booked already so she said to go ahead and make an appointment with him for July and if necessary we could cancel it. Her concern is that I wouldn't be ready for Dr. K yet. She said I have made great progress but if I am not far enough along then his treatment will be too advanced and it would just be a waste of time and money. But she feels that I will be ready to see him if I can make it through the Alinia treatment. Right now I am still on Ivermectin and Pyrantel Pamoate, on 4/22 I start on Albenza, and on 5/20 I start on Alinia, 500 mg, three times a day, for 20 days. I hope it goes well.

Treatment Plan

Anti-Microbials
  1. Lyme nosode – follow package instructions.
  2. Lyme Cocktail – Mix the following ingredients in a blender. Drink half in the morning and half in the evening. After initial die off is over run 15 minutes in ultrasonic cleaner after mixing in blender.
    1. Quintessence - 6 dropperfuls
    2. Grapefruit Juice - 1 tablespoon
    3. Water - 1/4 cup
    4. Artemisinin - start with 200 mg, work up to 600 mg per day as tolerated.
    5. Lipo-Health - 1 teaspoo
    6. Mimosa Pudica - 1/2 teaspoon per day, start with 2 days perr week, work up to 5 days per week as tolerated.
  3. Garlic and TriQuench – add the following to a little water in nebulizer and inhale once daily
    1. TriQuench – two drops
    2. Allimax – five to ten drops
  4.  Anti-Parasitic Treamtent – take in order listed
    1. Biltricide – two tablets three times per day for two days. Pause two weeks and repeat once. Ideally start with full moon (started this on 4/6/2012)
    2. 12 mg Ivermecting four times a day and 1,000 mg Pyrantel Pamoate at bedtime 14 days
    3. 400 mg Albenza twice a day for 28 days
    4. 500 mg Alinia three times a day for 20 days
  5. Valtrex – 1000 mg once per day at bedtime for at least three months (may continue this longer due to high viral load).
  6. Cordy Chi - 2 capsules twice per day before meals.
  7. Rizol Gamma - 10 drops twice per day in a little water, gargle then swallow twice per day.
  8. Homeo-K BAB - 5 drops twice per day with other Homeo-K remedies
  9. Rectal implant – combine 1 scoop of BioPure arteminisin with one capsule of organic, freeze-dried garlic in a ¼ cup of warm water. Insert rectally at bedtime two nights per week, not on consecutive nights.
Endocrine and Organ/Glandular Support
  1. Diutrex – one tablet two to three times daily before or between meals.
  2. Drenatrophin PMG – two tablets three times per day before meals. Hold on tongue 5 to 10 seconds before swallowing.
  3. Cardiotrophin PMG – one tablet three times per day before meals with the Drenatrophin.
Detox Support
  1. PC Ecklonia Cava – six tablets per day at bedtime.
  2. CGF (liquid chlorella) – ½ teaspoon three times per day at least 15 minutes before meals.
  3. Hyaluronic Acid - 2 dropperfuls twice per day under tongue 15 minutes away from food.
  4. Galactose - 1/2 teaspoon twice per day in water.
  5. MSM - 1 heaping teaspoon in water with breakfast and lunch.
  6. Detoxamin suppositories – insert on rectally at bedtime once a week.
  7. Pascalite bentonite clay – one teaspoon twice per day mixed into juice or water, follow with 8 ounces water. Do this twice per day at least 15 minutes before meals.
Nutrient Support
  1. CORE – six tablets daily after a large meal.
  2. Vitamin D – 6,000 IU daily.
GI/Digestive Support
  1. ProCalm – four capsules per day at bedtime.
  2. Supernatant – two capsules twice per day after meals.
  3. Betaine HCl with Pepsin (Thorne) – two to three capsules at the beginning of each meal.
  4. Custom Probiotics 11-Strain Formula – work up to two adult scoops per day
  5. Zypan – two to three before a meal
Circulation Support
  1. Venex (bee venom ointment) - apply topically to skin over nech (thyroid) and back
Methylation Support
  1. Methyl B12 shots – inject 0.5 ml methylcobalamin (10mg/ml) just under the skin of the abdomen, thighs, or buttocks twice per week.
Adrenal Support
  1. Ribes Nigrum – 20 drops twice per day in a little water – hold in mouth for 10 seconds before swallowing. Take first in the morning and again early afternoon.
Sanum Remedies (I had these from Germany)
  1. Sanum remedies Mucokehl, Notakehl, and Fortakehl – 10 drops twice per day at least 20 minutes away from food.
Homeopathic Remedies (online from www.biopure.eu/USA or directly from Germany)
  1. K-OXY – five drops twice per day on tongue.
  2. K-METHYL – five drops twice per day on tongue.
  3. K-MAF – five drops twice per day on tongue.
  4. K-ADH – five drops twice per day on tongue.
  5. K-Energy – five drops twice per day on tongue.
Other
  1. Two colonics back to back once a week OR 3 coffee enemas a week plus 2 colonics back to back once a month