[Carmen Willings]

Thanks, Dawn! Missed you all too. I had to put all my focus into preparing for a trip/workshop presentation and related projects. Here’s some more of my AIP favorites for you to try:

AIP Sweet Apple Breakfast Sausage

• 1 lb ground turkey
• 1/2 tsp cinnamon
• 1/4 tsp thyme
• 1/4 tsp ginger
• 1/4 tsp sea salt
• 1 green apple chopped into small pieces
• 2 Tbsp olive oil or coconut oil
• 1/4 c. chicken bone broth

Cook meat with spices and oil in a large pan. When cooked through, add spices and green apple and broth. Cover and simmer until apple is soft and it has thickened.

AIP “Scarborough Fair” Breakfast Poppers

• 2-3 slices of no-nitrite turkey bacon, diced
• 1 clove chopped garlic
• 1 tsp rosemary
• 1/2 tsp thyme
• 1 lb ground turkey
• 1 c. shredded sweet potato
• 1/2 c. spinach finely chopped
• 1/2 c. diced apple
• 2 Tbsp of coconut oil (or ghee if you can tolerate)
• 2 Tbsp coconut or cassava flour
• 1 tsp ground sage
• 1/2 tsp sea salt
• 1/2 tsp parsley

Preheat oven to 400 and line baking sheet with parchment paper. Cook turkey bacon with garlic, rosemary and thyme until cooked through but not overly crispy. Set mixture aside.  Take raw sweet potato and shred it (you can substitute carrots if you prefer). Mix ground turkey, sweet potato, spinach, apple, and bacon mixture.  Add flour, coconut oil and seasonings and combine. Roll into balls and place on prepared sheet. Bake 25-28 minutes or more depending on size.

AIP Banana Breakfast Cookies

• 1/2 c. cassava flour
• 1/3 c. coconut flour
• 1/4 c. collagen peptides (I use Vital Proteins)
• 1 Tbsp gelatin
• 1/2 tsp baking soda
• 1 or 2 bananas mashed (depends on final texture you prefer! – approximately 3/4 c. – 1 c. )
• 1/2 c. warmed coconut butter
• 1/4 c. coconut oil melted and cooled
• 1/4 c. maple syrup (the real stuff – not pancake syrup)
• 1 Tbsp lemon juice or apple cider vinegar (depends on your preference)

Line cookie sheet with parchment paper and preheat oven to 375. Combine dry ingredients in medium bowl. Whisk together wet ingredients in a medium bowl. Gradually add dry ingredients and fold together without over mixing. I like to use a melon scoop to make balls on the prepared sheet – it will give nice crisp ridges that make it even more delicious! Bake 12 minutes or more until golden brown. Enjoy!

 

[Carmen Willings]

Dawn, I can’t believe we were so close! We love Maine! It is such a beautiful state!

Lori, definitely let me know if you are in the area! 🙂

[Carmen Willings]

The gummy bears are so easy! I got molds for them on Amazon for around $10 I think. Here’s the recipe:

1/2 c. pure juice (no sugar and have fun with the flavors or even mix them!)

1 Tbsp honey (the good stuff)

2 Tbsp gelatin -I order mine from Amazon – get the real stuff! 😉

I also add a drop or 2 of essential oil to give it a stronger flavor (e.g. lemon, lime, wild orange, etc.)

Heat the juice until light boil in saucepan. Turn down heat to lowest setting and add honey and blend but don’t over-cook or you’ll cook off the good properties. Add gelatin and blend. Add a drop or two of EO. Use a dropper to suck up the liquid and transfer to mold. Refrigerate for 15+ minutes and they pop right out! Enjoy! 🙂

[Carmen Willings]

I am SO sorry for my tardy response!!! I needed to put all my attention into other projects so I’m just now getting caught up! If you’re looking for a tasty snack, I love the Organic Plantain Chips with Himalayan Sea Salt! I find them at Sprouts or at Costco. I also found a recipe before Christmas for Christmas cookies and I have to admit I made too many…for many weeks. They are so good! I just make them into circles and don’t worry about frosting. Homemade gummy bears are yummy too! Healthier go-to snacks include carrots & celery and blueberries & blackberries. Here’s some favorite recipes that have been my go-to’s:

https://fedandfulfilled.com/turkey-apple-breakfast-hash/

https://unboundwellness.com/breakfast-sausage-chicken-poppers/

I can’t write them all now, but if you like curry, you’ll like this recipe. I did start adding cumin and coriander but those are not OK on the elimination phase so you can omit if needed.

1Tbsp extra virgin olive oil

2 garlic cloves, chopped

1 med. onion diced

1/2 Tbsp ground turmeric

1/2 Tbsp ground cumin **

1 Tbsp ground coriander **

1/2 tsp onion powder

1 bag of frozen cubed sweet potato (or cut up fresh)

2 celery stalks chopped

1/2 c. chopped scallions

1 c. water

1 tsp sea salt

1 organic chicken breast cooked and cut into bit size pieces

13 oz can of full fat coconut milk

Directions: Heat skillet over medium heat and coat pan with olive oil. Saute garlic until slightly brown. Add onion and cover and simmer until translucent. Stir in spices, coating onions then add the sweet potato, celery, scallions, water and salt. Simmer veggies until the sweet potatoes are soft. Add cooked chicken and coconut milk, continue to simmer to mix flavors.

I hope you enjoy!!! 🙂

[Carmen Willings]

Dawn! I wish I had “virtually” met you sooner! We went on a road trip to Maine last summer! We even drove by Stephen King’s house! And Price! I just flew into the Fort Worth airport last week making a connection! I was presenting at a conference in Abilene! Lori, I am probably the closest to you – I live just north of Atlanta, GA.

[Carmen Willings]

Happy belated birthday, Dawn! Hope you had an amazing day and have a healthy and happy year to come! 🙂

[Carmen Willings]

Dawn and Ashley, thanks for your well wishes. The brain crushing migraine lasted a day or two but I had a mild ongoing head/neck ache for a solid week after. I still have a neck ache but I’m beginning to think that is positional and from sleeping wrong. I plan to try Benadryl and Tylenol prior to the next infusion and see if that helps. If not, I will reach out to my neurologist for suggestions and other options. When do you both start taking the combo? Right before? A day before? What dose/frequency? Desperate to not have a repeat!!

[Carmen Willings]

Ashley, thank you for all these suggestions. It is just one nurse that pressures to increase – same one that pressured back in October. The other nurses have been great! I’m still having neck ache and some headache a week later – nothing like last Wednesday/Thursday. I’m feeling a bit discouraged at the moment hoping the side effects are going to end up being worse than the LEMS symptoms. I have a seizure history but never had migraines prior to ivig. I will give it another try but may request to stop if this is what I have to look forward to each time. I had really been hopeful this would be a good solution. *sigh*

[Carmen Willings]

Thank you, Dawn! My neurologist added the saline before and I asked the nurse if she could give me extra after as well. To briefly vent – it is frustrating that I have to keep asking for a slower rate (120). If only they could have the information in the system and not debate it. Maybe they are anxious to go home?? My Monday nurse was great, but the nurse on Tuesday kept challenging my request and saying that once I get used to it, I should be able to “handle it”. This was also the nurse that stuck me repeatedly, said my veins were rolling and couldn’t get the needle in even after using the vein finder (mind you my veins look like they are on top of my skin!) so her challenging my request for a slow rate was really frustrating. Thankfully the head nurse came over and rescued me with one prick. Wish we could request nurses… *sigh*

You said you take a combination of Tylenol and Benadryl. Why the Benadryl? And do you find Tylenol to be better than Motrin or Excedrin? Just curious. Yes, my hemotologist took me off of asprin because he felt NSAIDs could be contributing to muscle fatigue and LEMS symptoms. He explained in technical terms that I can’t pretend to remember. I will ask again at my 6 month follow up. My cardiologist also told me to not take my heart medicine prior to the ivig so I didn’t take it those days. In hind sight, perhaps I should have taken it afterwards as going without for two days could be contributing to my headache. Just hoping I can find the magic combination for my next dose of ivig! At any rate I’m hopeful that since I’m feeling the negative affects – the positive ones are right around the corner! 🙂

[Carmen Willings]

I ended up getting a monster migraine and low grade temp. I ended up taking Excedrin and really hope I don’t have any set backs after short term use of it! Ugh!

 

[Carmen Willings]

Dawn, I’m anxious to hear more about it and if you have negative side effects. I ended up gettting a monster migraine yesterday following the ivig. I had to cave in and take Excedrin. I’m so deflated as I know my doctor wanted me to avoid the NSAIDs as he felt they contribute to my muscle weekness. It was for that reason that I had tried my best to manage with the oils vs Benadryl and Motrin. I had to make the decision that I’d rather have muscle weakness than the crushing headache! I’d love to know if you are free of migraine side effect with the subQ. Or do you still take Benadryl and Motrin to prevent?? I feel it’s a catch 22 and I can’t win. I REALLY don’t want this to be a monthly pattern or experience! Ugh!

[Carmen Willings]

The Myasthenia Gravis oils are listed in “The Essential Life 5th Edition” book I have. Recommended oils: helichrysum (topical or internal use), ginger (topical or internal), lemongrass (topical or internal), cypress (topical only), DDR celular complex (topical or internal).

[Carmen Willings]

Someone please make a t-shirt!!! “Making lemonade out of LEMonS” with a picture of a zebra sipping a lemonade! and #raredisease 🙂

[Carmen Willings]

Ashley, agreed! It is the most restrictive diet I have followed to date (I have to be GF for Celiacs and this makes that seem easy! I’ve also done Keto and numerous other diets in weightloss attempts). I think it depends on how strictly you follow it for success. That being said, I notice great improvement in some symptoms, but not as big differences in others. I’m hopeful the longer I follow it, the more it will impact my overall health. I do still get tingling in my leg but that is significantly less than I was experiencing. The peace in my gut is the most significant along with not getting chest pain with walking up stairs and inclines. I have noticed no change in my raynauds to date.

My sister got me hooked on DoTERRA during my big flare up in 2016. I craved the Peace blend and Vetiver! I switched over to their vitamin supplements as I figured I would be buying supplements anyhow. I really trust this company and I can earn points to afford the oils I otherwise couldn’t afford using points. I forget to use the oils for ways outside of my usual use – but I’m trying to be better about it! Especially since I’m trying to avoid OTC medications and my doctor has taken me off of so many because he felt they were making the LEMS worse. I had ivig yesterday and today. I prepped each day with 4 drops Copaiba and 2 drops Frankincense in a veggie cap. I also had a “Benadryl” veggie cap each day of 2 drops lemon, 2 drops lavender, 2 drops melaleuca and 2 drops peppermint. I have the ginger drops for any nausea.

I have the deep blue rub but I don’t  use it as often as I should – simply because the smell is pretty strong! Have you heard of the Symphony of the Cells? I knew my husband would never do the full protocol! haha! So instead, I put the oils of the protocols in roller bottles with fco and he massages my back every night before bed! Here is what I put in the bottles:

Neurological blend in 10 mL roller bottle: 8 drops DDR (I ALWAYS use this in every blend as it repairs damaged cells!), 6 drops Frankincense, 6 drops Thyme, 6 drops Clove, 6 drops Aroma Touch, 6 drops Lemongrass, 6 drops Melissa OR Arborvitae (Melissa is crazy expensive so it depends), 6 drops Patchouli, 6 drops Bergamot, 6 drops Peppermint. Top with Fractionated Coconut Oil (FCO)

Muscle/Inflammatory blend in 10 mL roller bottle: 8 drops DDR, 6 drops Melaleuca, 6 drops Wintergreen, 6 drops Aroma Touch, 6 drops Lemongrass, 6 drops Siberian Fir, 6 drops Helichrysum, 6 drops Deep Blue, 6 drops Peppermint. Tope with FCO

LEMS is so rare, I can’t find a protocal for it – but I did see a listing for Myasthenia Gravis so I may pull together those oils and give it a try!

If you don’t have someone to massage in your spine, use it on the nape of your neck, across your temples and on your big toes. Although the massage is nice, these are great locations for absorbing the oils. 🙂

[Carmen Willings]

Thank you Joe, Crissy, and Dawn!

Dawn, I’m anxious to hear about the subcutaneous version! Do you have to stick yourself?? That may be a deal breaker for me! I used to have to give myself allergy shots and finally stopped as I  had such a hard time getting up the will to stick myself! But I DO like the idea of it taking less time and fitting more easily into my busy schedule. Right now I’m just so grateful for the ivig and hope I feel the same pep in my step I felt after the October infusion.

As for the coffee I felt the same way! I am a total coffee addict! It was rough at first as I thought I had to cut out caffeine – but I later realized the coffee bean is the issue more than cafffeine. I now have a green matcha every morning with coconut milk, a little raw honey, collagen peptides and MCT oil. 🙂

I totally understand about trying to keep a budget! The AIP protocol recommends organic and free range meats. I must say I don’t follow that as it is so expensive. I do try my best to get the organic vegetables and fruits that are identified as the dirty dozen. Most items I buy are availalbe at Walmart or Costco (I’m a frugal girl) but some items are definitely more expenses – particularly those for baking – like tiger nut flour and coconut manna. I get those because I found a Christmas cookie recipe I LOVE and it makes following the diet easy! Doesn’t help with any weight loss efforts but super yummy! 🙂 I found a number of recipes that are tasty and I’m surprised I’m not cravy some of the foods I’ve eliminated. I think the hardest part to staying on the “diet” is cooking from scratch. I feel like a prairie girl these days! ha! But desperate times call for desperate measures and I figure I can’t go wrong eating healthy foods. 🙂

[Carmen Willings]

Thanks Ashley! I had found Hi-Lyte on Amazon so I bought that and it arrived yesterday. I tried it this morning as I had ivig yesterday and today. I’ll have to experiment with what to mix it with as it was unflavored and salty – guack! Maybe I’ll mix with bone broth??? Do you continue to take it after ivig or just as prep and during?

[Carmen Willings]

Dawn, thank you SO much for sharing about coconut water! I was just heading out the door to go to the store to get some for next week! I will definitely look at the vitamin water and smart water as opposed to coconut. I just don’t want to take anything that has sugar or strange ingredients. Hoping a come across something that is healthy and tasty! 🙂

[Carmen Willings]

Thanks for these great tips, ladies!! I have my next ivig scheduled for Monday and Tuesday (*Dawn, my neurologist increased the dose from last time – hoping this dose will be more accurate!!) and I’m putting together a checklist of reminders of what to do and what to bring for each ivig treatment (I had a nightmare last night I got to the infusion center and forgot to bring everything I needed!!). Mental note. I should switch to Thurs/Fri so I have the weekend to recover. I teach full time so I’m just taking the afternoons off on those days and seeing my students in the morning (I work 1:1 with students so my schedule is more flexible). I figure if I do afternoons, I will just need to take one day total off. I noticed the last two ivig treatments I felt flu like symptoms on day 3 so excellent point about scheduling moving forward.  I’m following the Autoimmune Paleo protocol so I want to avoid Benadryl and any NSAIDs but I’m going to try copaiba essential oil and Frankincense essential oil in capsules. I’ll have to read through my essential oil books to see what oils would have the effect of Benadryl. Great advice too about not just hydrating with water. That is what I had been doing. I’m planning to try using coconut water but I’ll check out the ingredients in the sugar free vitamin water to see if that may be an option too.

Thanks for the great suggestions! 🙂

[Carmen Willings]

Oh my goodness! I get the same rash when I am in an extreme flare up! But my is on my thighs just above my knees. It swells, turns red and is hot to the touch – and it feels like my legs are on fire!

As for muscle fatigue and flare ups, the largest trigger is exerting myself and stress. When I am heading into a big flare that lasts several months, it always begins with chest/back/jaw pain when I walk up stairs or inclines. Then the heaviness in my legs and wobbliness/unsteadiness begins. During these periods, severe heat and cold make symptoms worse as does lack of sleep. Also hormonal changes are a big factor. My flare ups are probalby prolonged as I continue to work full time and push myself. I’m noticing lately there’s less “non-flare” times and a blending between flare ups and non-flare times. I’m trying to adjust and manage symptoms more consistently.

[Carmen Willings]

Love this topic, Ashley! I have started ivig treatment, but I am also using homeopathic strategies as opposed to some of the medicine options for LEMS (I’m concerned about the side affects but I also have a seizure history which makes me concerned about taking them). Great idea abou the CBD oil. I had read others post about using Benadryl and NSAIDs before and after ivig. I’m trying to stay away from those as I started following the Autoimmune Paleo Protocol (highly recommend!). I have all the DoTERRA oils – but sometimes forget to use them consistently outside of my normal routine. I will try taking Copaiba (similar to the CBD oil) before my ivig next week and see if that helps. I also saw others recommend electrolite drinks. I’m going to try that as I’ve just been hydrating with water. I am stearing clear of sugar with AIP so I’m going to try Coconut water. I wonder if they would allow me to diffuse oils during my treatment?

As far as difficulty with sleep, I diffuse Serenity every night. I take the Serenity capsules and when I’m having a particular difficult time sleeping, I make my own capsules with 4 drops of lavendar and 2 drops of frankinsence – knocks me out completely!! My husband also massages essential oil blend protocols on my spine each night. I make a neurological blend, muscle blend and a third that I rotate depending on symptoms.

I’d love to hear more about homeopathic remedies others are using so I can incorporate them into my routine. Thanks again!

[Carmen Willings]

Thanks, Price! I’m a Celiac too! It’s nice that they offer snacks…but none are gf. I brought snacks and all my devices too! When I had my initial 5 day blast my husband took the days off and we did a 5 day challenge! We brought different games and tried in those 5 days to play one round of every game we owned (I think we played about 65 games that week!)! It was a lot of fun – minus the day I got hit with the meningitis-like symptoms! This time I’m prepping for a workshop/conference so I felt I needed to work on that. I don’t handle “bored” well so I’m like you! I’d rather have plenty to keep me busy! 🙂

[Carmen Willings]

Interesting! My blood pressure is always low but it dropped during the treatment. I just though I was feeling chill! 🙂 I’m always dehydrated – even when I drink plenty of water so extra saline would be nice! They gave it to me last time but not this time. I didn’t think much of it, but I should ask next time!

[Carmen Willings]

Thank you for the additional info, Ashley! Glad to hear you are close to your baseline! Very encouraging! 🙂

[Carmen Willings]

Thank you, Dawn! I will check that out and share it with him!