Doctor's Appointment Updates

I haven't updated about my medical situation in a while, I guess I've been very afraid of jinxing it, as silly as that sounds.

I have been off of IV antibiotics since August, believe it or not.  My body was no longer processing the antibiotics correctly and had also built an insane resistance to them.  As soon as Dr. G took me off of them, I started to feel much better very quickly.  It was great!  I got the energy to actually sew things, I traveled to Seattle and attended PAX prime with my brother, his fiancee and my friend Josie.  That trip was very difficult and I was in a bunch of pain but it was worth it.

In October I had my appointment in San Francisco with Dr. H.  He said that there was a sparkle in my eyes that he has never seen before.  Do you know what was cool?  On my symptom check list sheet, I was able to check that I had improved in basically EVERYTHING.  I almost took a picture of my symptom check list I was so happy with it, but then, ya know, there's things on there that I don't want the general public to see.  That appointment Dr. H told me that I could take my PICC out in 6 weeks.  I started an amylose free diet to help with a build up of neurotoxins; recent blood tests have shown that my neurotoxins are tripled the amount of 'normal'.  He also recommended that we did a ERMI Mold Test at home because I had some abnormally high mold factors in my blood work as well.  Luckily, our mold test actually came back with less mold than average house holds.  The bad thing is that that means that I am overly sensitives to molds.

Shortly after the appointment, the skin around my PICC line started to blister, tear, and become very weak.  It got very bad very quickly and I ended up having to get my PICC pulled before Halloween which was AMAZING because I got to go to Scarowinds (roller coasters and haunted houses) that I typically go to every year but had to miss last year, and was pretty positive I was going to miss this year.  My PICC, as of current, has been out for three weeks.  It's awesome showering like a normal person, I love it.  Unfortunately though, the insertion site has yet to heal, it looks the exact same as it did the day that I had it removed.  It's gross.  And embarrassing.  I hate it.

Today I had my phone appointment with Dr. G.  So far so good, sort of.  He feels I'm still doing good without the IV antibiotics, but he feels that it's coming back very slowly, so we are going to start hitting it again.  "It's" coming back means that babesia, not so much the Lyme, is showing back up.  He determined that when because my body is weak it's not producing antibodies STILL, and also that my body can only tolerate antibiotics in very short bursts of time.  I am starting with two new oral antibiotics, and stopping Minocycline since I've been on it forever.  I'm also being put on a blood thinner (does Lymie out there have experience with being on blood thinners?  I've never been, so this is my first time.)  Also a whole bunch of supplements.  So far no new PICC line, which is great.

I was pretty sure I was going to have to get a line put back in, so I'm really relieved that I don't have to.  This isn't that big of a win either, but instead of an appointment every 4 weeks, he's moved it to every 6 weeks!  YAY!

One Tiny Pill...

...has messed me up royally.

I've been doing really well, I got my PICC line out, I've been motivated to get a part time job (haven't yet) and to sew. I've been looking at the possibility of moving out of my parents house again, and then I go and messed everything up.

One friggin pill... I miscounted my medications and didn't realize until after about an hour and a half of crying for no reason that that is the reason I've been so messed up the last couple days.

My brain has been doing weird skipping things, I've been excessively irritable and hateful, super negative about every little thing and feel like I deserve absolutely nothing in my life. The nightmares, tummy aches, uncontrollable rage hell even Saby could tell something was wrong with me just via text.

Luckily I had switched types of medications not to long ago, so I had some old medication left over. From what I've read, this stuff is still in my system and I should be back to decently normal by tomorrow morning. Monday I'll get my prescription from the pharmacy.

I don't like the idea that my life is being controlled by medication and that it will always be that way.  Stupid diseases. 

In conclusion, it's probably best that no one talks to me until tomorrow sometime.

Gluten Free Amylose Free Quinoa Buffalo Chicken

It was so good I forgot to take a picture before I started eating it... so here's a cute buffalo (was going to be a cute chicken but then I felt bad because I ate the chicken.)  Anyways.  I've been craving buffalo wings, but of course, I can't have them.  So I kinda invented this recipe (I couldn't find any quinoa chicken breading, but I probably wasn't looking hard enough.)  So here you go!

Again, another pre-warning, I follow the Shoemaker No Amylose diet, so it may be different for you all, just be cautious and follow your diet like a good person.

Homemade Buffalo Sauce (Better Than Store Bought)
Ingredients:

• 1/3 cup butter
• 1/2 cup Frank's Red Hot Sauce
• 1 tablespoon white vinegar
• 2 teaspoons garlic powder

Directions:

Melt the butter either in a sauce pan or microwave.  Once butter is melted, whisk in hot sauce, vinegar, and garlic powder.  Once combined, set off to the side.  (Mix again before serving.)

Quinoa Chicken Breading

Ingredients:

• 1 cup quinoa
• 1/2 tablespoon salt
• 1/2 tablespoon pepper
• 1/2 teaspoon paprika
• 1/2 tablespoon garlic powder

Directions:

In a very lightly oiled skillet pour 1 cup of quinoa in and heat.  Toast the quinoa on medium heat for about 5-7 minutes.  The quinoa makes cute little popping noises when they are toasting.  Make sure they don't burn.  Once toasted, put in a blender or food processor and blend until they form a fine powder.

In a medium bowl, mix quinoa flour-ness with the salt, pepper, paprika and garlic.  Now it's ready for breadin'.

Buffalo Fried Chicken

Ingredients:

• 2 boneless chicken breasts
• 2 eggs
• 1 cup of quinoa chicken breading
• cooking oil
• 3/4 cup of homemade buffalo sauce
• crumbled bleu cheese

Directions

In one medium bowl, mix 2 eggs together.  In another medium bowl, have the chicken breading.  I'm not a fan of thick chicken, so I beat out my chicken, but that step is up for you.  Take beaten or non-abused chicken and dip in egg, then into the breading mixture.  After the chicken is dipped and breaded, I like to bread it again, so repeat the above step.  (You don't have to if you don't want to.)  Once breaded the number of times you enjoy, set chicken on wax paper and place in the fridge.  The longer the chicken stays in the fridge the more the breading will stick when it's fried.

In a pan, bring oil up to a boiling level.  Fry chicken until nice crispy and brown AND ISN'T RAW.  Plate chicken, and pour on desired amount of homemade buffalo sauce on each chicken.  Top with some sprinklings of bleu cheese, and voila! Done!

No Amylose, Gluten Free Quinoa Pizza!!!

I crave pizza so much, but on a no amylose diet, basically I'm screwed.  Until now!  This was soooo good, I actually think I liked this crust better than regular pizza crust, believe or not.  This is also gluten free, dairy free (the crust, not the cheese), and no sugar.  It's so good, I can't say that enough?  The cool thing about this too, is how quick it is made too.

Ingredients (makes 3 small personal sized pizzas)

• 3/4 cup quinoa (let soak in cool water for at least 3 hours)
• 1/2 cup water
• 1/2 tablespoon of minced garlic
• 1/2 teaspoon salt
• 1 teaspoon of Italian seasoning mix (I used oregano, basil, rosemary, and thyme)

Directions

Preheat the oven at 450 degrees F.  Drain and rinse quinoa.  Add all ingredients to a blender, and blend until it is a smooth thick liquid.  Pour mixture on top a greased baking sheet into desired amounts for each crust.  (If you want to make one large pizza go for it!)  Smooth mixture into desired thickness and size.

Put baking sheet and crust(s) into the oven and bake for 10-15 minutes.  Watch for the edges to turn golden brown.  Flip the crust(s) over and bake for an additional 5 minutes.  Again, watch for the golden brown.  Remove crust(s) from the oven.

Decorate your pizza crust as desired!  I used pizza sauce (which didn't have any added sugar or starches), mozzarella cheese and fresh veggies.  Once decorated all pizza like, throw (okay don't throw, gently replace) your pizza back into the oven and wait for cheese to melt.  This should only take a couple minutes, just keep a close eye so you don't burn it.  Once cheese is melted, all done!

No Amylose Taco Casserole

There seems to be a back and forth on what you can have with a no amylose diet, but I've been following Dr. Shoemaker's diet, and this recipe follows that diet.  Amylose free diets are good for Lymies, also good for those struggling with neuro-toxins and insulin resistance (both me!)  I make this whenever I am craving Taco Bell or something similar.  I could not find any taco seasoning at the store that does not have added sugar or starches so I made my own, which is also included in this recipe.

Taco Seasoning
    Ingredients

• 1 tablespoon chili pepper
• 1/4 teaspoon garlic powder
• 1/4 teaspoon onion powder
• 1/4 teaspoon dried oregano
• 1/2 teaspoon paprika
• 1 1/2 teaspoon ground cumin
• 1 teaspoon salt
• 1 teaspoon pepper

    Directions

In a mixing bowl, mix together all ingredients and store in an airtight container until ready to use.

Taco Casserole (serves 4)
    Ingredients

• 1 package of ground beef (the more lean the better)
• 1 can of mild chili beans (I could only find one without added sugar, it was store brand)
• 1 can of refried beans 
• 1 pack or 2 tablespoons of taco seasoning
• 1 tablespoon of verde taco sauce
• 1 jar of salsa
• lettuce
• tomato
• onions
• sour cream
• cheddar cheese
• queso cheese
• 3/4 cup of water
• Corn tortillas (optional - some amylose diets allow, some do not.  I avoid corn products).

    Directions

Preheat oven to 350 degrees.  In a skillet, cook ground beef on medium until brown.  Add a teaspoon of water and drain water and fat.  (The extra teaspoon of water actually draws more of the fat away from the beef.)  Add 3/4 cup of water and taco seasoning, stir in, let simmer until thickens.

Open can of chili beans and drain as much as possible.  In a medium bowl add cooked beef, verde taco sauce, chili beans, half jar of salsa and half a can of refried beans.  Mix until well blended.

In a casserole dish spread a small layer of the beef mix, top with crumbled corn tortillas.  Add a layer of refried beans, then beef mix, and refried beans again.  Top with desired amount of cheddar cheese and queso cheese.  Place in the over at 350 degrees for 7 minutes, or until cheese has melted.

Top with lettuce, tomato, onions, sour cream, and other desired toppings and serve!

Be Careful Who You Talk To

A man entered my support group and tried to tell everyone that Lyme is cured by a horse dewormer. If anyone tells you this please know it is potientally life threatening. He does not have Lyme himself but says he can prove that it cures it. This man suffers from Morgellons. Please read the following information: The main purported symptom of Morgellons is "a fixed belief" that fibers are embedded in or extruding from the skin.  Many dermatologists treat Morgellons as delusional parasitosis. After a thorough medical examination to rule out known organic causes for the symptoms, delusional parasitosis patients are typically prescribed one of several typical antipsychotic drugs. Self-Treatment: Persons with Morgellons symptoms may turn to alternative remedies described on web sites and discussion groups. Some treatments are dangerous, however, and have included the use of bleach, veterinary medicines intended for deworming horses, and industrial insecticides.

Please be careful of who you speak to on the Internet and their suggestions.

Lost

For the first time in my Lyme fight I feel like I'm losing. The last two weeks have been worse than ever. 

Two weeks ago my blood work came back with liver function problems. The last week... I don't know what exactly is going on but it's not good. I've been in a constant sleepy state... I don't remember much of the day it mostly seems like dreams to me. I have problems falling asleep, but when I do, I can't wake up.  One night moms pump was going off and I wanted to get up to check on her. I was conscious of her pump, and knew I needed to check, but I could not gets self to wake up. Trying to sit up in bed, I'd instantly fall down back to sleep. I've tried standing up too, that ends with me falling back in bed. It's like I'm trapped in sleep and I can't escape it no matter how hard I try. It's been scary.

Along with the sleep I've been having devastatingly horrific nightmares. I've had vivid, violent ones before, but nothing like this. My therapist says its my body trying to tell me something. My therapist also says that my soul/my spirit is dwindling, and is dying. I told him how I really enjoy sewing but when I get ready to do it, I don't want to. He says its my spirit and self giving up.

This is the first time I've ever felt like I'm losing, like I have no strength. And for the first time ever, I am very very scared. My mind is messing up, I thought for a fact something had happened when it never did.

I have this absolutely dreadful feeling that if I don't take a break from medications something bad is going to happen.

I don't want to be weak, I want to keep fighting, I don't want to give up, but right now I feel I have to.

Monday I contacted my LLMD because of these symptoms getting out of control. They told me to stop all medications until my phone appointment with my doctor tomorrow at one. I'm prepared to ask for a break from the meds. I feel if I continue them at this point it's going to get much worse instead of actually helping. I have a lot of stuff coming up, the Lymie BBQ, Saby coming into town, going to PAX with Josie and getting to see Tommy, and I don't want to miss any of this stuff, or be too worn out to do anything. I can't miss any of this stuff, I won't let myself.

I really don't like this feeling because I feel very much like I've lost. I feel like I'm failing myself and my family because I've lost my strength. I feel so drained, exhausted, sad, and useless. I don't wanna give up.