When it’s too dangerous: a treatment update

Killing bad bugs is serious business.  Who knows. Maybe even cancer will someday be treated the same way we go after Lyme Disease.  At least some of the fibromyalgia and multiple sclerosis approaches are starting to lean in the direction of causation by bacterial infection, parasites, and fungi.

But not all approaches are worthy of pursuit.  Most of you reading this blog know of the struggle I’ve experienced trying to eradicate Lyme Disease and some Co-Infections.  I’ve tried a variety of treatment approaches these past 1 1/2 years after extensive research, networking, and good ol’ trial and error.  Although 1 1/2 years is not a long time for the treatment of Chronic or even Late Stage Lyme Disease, I must say that I have learned a lot already!  Sadly, we are going backwards financially trying to find the best course of action.  And now an important truth became clear to me and my husband this evening from a Biblical principle:

23 “I have the right to do anything,” you say—but not everything is beneficial. “I have the right to do anything”—but not everything is constructive.  1 Cor 10:23

We have discovered that my most recent treatment approach is just too dangerous for me at its current intensity.  I will need to back off on the dosage of the new antibiotic regime to keep from damaging my body.  The seizure attacks of the last 36 hours, while not new to me, might even kill me if we were to continue this course.  To kill off Bartonella (a co-infection of Lyme) is considered by some, the hardest co-infection of them all.  This bacteria adapts as it escapes further into one’s tissues when in the presence of antibiotics and other approaches, making it both a super bug and a smart bug.  Unfortunately, it might be the cause of my chronic urinary tract infection and maybe even the seizure attacks.  My, my this complicates things!

We have decided to proceed with a slower yet persistent plan of attack.  The Rife machine will be on hold for awhile due to my increased sensitivity to electromagnetic frequencies when feeling sicker.  “Game on” is still our approach and we’ll take all the time outs, plays in the playbook, and “fighting Irish” I can muster to win this thing.  Steve will be home this weekend with me for my safety as we transition my care.  I’ve gotten weaker this past week and that is not good.

It is good, however, that we have hope and are one accord with the next steps.  I’ll continue on the protein/oil/vegetable diet to attempt to keep Candida down and replenish my gut flora; pushing fluids and probiotics will be critical as well.  I was dreadfully sick 1 1/2 years ago when I started on a rotation of a few antibiotics and had to stop.  Rife treatments and a host of supplements, tinctures, compounded prescriptions and Epsom salt baths followed.  At least now I think I will be able to tolerate a daily low dose of antibiotics:  the proven track record of care by the International Lyme and Associated Disease Society.  I will also continue with the mold illness treatments of which I have written previously:  VIP and Losartan.

Some things just take time I guess.  Another encouraging note:  after the wretched episodes, my mind is significantly clearer.  The improvement mimics my status pre-illness from when I contracted viral hepatitis 2 years ago.  Perhaps we are finally on to an answer after all?  Who knows.  I’ve had my hopes dashed before many times.  That’s o.k.  For tonight, or rather this morning, there’s a real indication that something is improving!

Have I mentioned how wonderful my husband Steve has been through this whole ordeal?  I am grateful for his unfailing love and tenderness that has never wavered despite the trials we have endured.  Thank you Jesus.  We are leaning on you and thank you for walking with us these days as well.

And thank you too, Gentle Reader.  :J

Potato Chips Made Me Better

Did you know that Detroiters eat an average of 7 lbs. of chips per year, as opposed to 4 lbs. in the rest of the country?  If it’s true, it must be due to the Better Made

Better Made Potato Chips
Better Made Potato Chips

snack company that has dominated the potato chip market in Michigan since it began in 1930.  As for me, I can say that these chips made me happy as a kid growing up in the Detroit area.  When I would walk into my grandparents’ home in the country on Lake Columbia, my eyes would quickly scan the top of the refrigerator.  I knew it was going to be a good visit if there was a family sized bag of Better Made potato chips up there!  The same was true at home, especially if there were any left after my dad had already snarfed his evening share of chips with a bowl of chocolate ice cream.  Yes, it’s genetic.   My family loved potato chips!  (I recommend the folded, slightly browned ones with the extra trapped salt and crunch!)

Flash forward a few decades and even today, a chip has the power to make me happy!  Of course I can’t justify the simple carbs and canola oil combination of Better Made potato chips on my special diet so I had to find a replacement.  Let’s see, if there was a crunchy treat that had relatively low salt, 4 grams of protein, 5 grams of fiber, no sugar, 14 grams of carbohydrate, and all non-GMO ingredients, would you go for it?  Well I checked them out and found my new favorite:  Beanitos are better and made for me!  The pinto bean and black bean varieties have clean ingredients and no guilt . . . unless you eat more than, say 12 chips!  Better buy a couple of bags or there might not be any left on top of your refrigerator tomorrow!  Or maybe they need to manufacture a Family Size Beanitos too?

Well that’s all fine and dandy but what does it have to do with finding hope while recovering from Lyme Disease?  In my life, having a treat, an escape, is an essential part of coping with the trials and suffering of this crazy illness.  The ingredients in Beanitos barely count as cheating on my protein-oil-vegetable diet!  I thank the Lord for the little things:  round crispy, slightly salty, and satisfying too!

Long before I would crash and burn this evening, paralyzed by seizure attacks with difficulty speaking, moving, and even feeding myself a sip of water, I imbibed in munching on a few chips.  I am grateful for such a simple pleasure as this to take my mind off of the nightly terrors that have been anything but pleasant these past few weeks.  When the health food section of our local grocery store remained sold out of my fav bean chips, I planned to head straight for the health food store as soon as I was well enough to drive.  My delight came today.  Yippeee!  Both flavors were in stock and “jumped” into my shopping basket as I walked by!  Those happy feelings were to fill my tummy once again.

God’s Word teaches us:

14 Therefore, since we have a great high priest who has ascended into heaven,[f] Jesus the Son of God, let us hold firmly to the faith we profess. 15 For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. 16 Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.  Hebrews 4

Yes.  Once again my Prince of Peace met me today in my time of need.  This day and always He satisfies my soul that cries out for His mercy when I am in times of crisis — and when I need a little treat as well.  Sometimes the little things mean a lot.  As for me and my refrigerator, we will keep a steady supply of crunchy treats within reach a while longer.  As for me and my house, under the spiritual leadership of my husband and best friend, we will serve and wait on the Lord.  In all things I am truly blessed.

Where does my hope come from?

From where may I find timeless truths that can transform my weary frame, my broken heart and mind?   Let’s see, for that to be true, the truths manifest in words would have to be true for all people at all times.  The only place for such divine work is from the scripture of the Bible that was, is, and forever will be.  (For:  In the beginning was the Word, and the Word was with God, and the Word was God.  John 1:1.)

I pray that you will find comfort, hope, and peace among these passages.  Some verses are for instruction, some for encouragement, some are promises, and some simply convey that the Lord understands and cares for our life experiences.  Some will also have greater meaning when taken in context of how they were written.  I encourage you to go to the Blue Letter Bible for the context of each passage and for more explanation or “commentary.”

May your heart be filled this day with the love, peace, and joy that comes from God Himself as He reveals Himself to you!  :J

And yet I am not alone, because the Father is with me.  John 16:32b

These things I have spoken to you, that in Me you may have peace.  In the world you will have tribulation; but be of good cheer, I have overcome the world.  John 16:33

He does not forget the cry of the humble.  Psalm 9:12b

I leave with you, My peace I give to you; not as the world gives do I give to you.  Let not your heart be trouble, neither let it be afraid.  John 14:27

As each one has received a gift, minister it to one another, as good stewards of the manifold grace of God.  1 Peter 4:10

And our hope for you is steadfast, because we know that as you are partakers of the sufferings, so also you will partake of the consolation (i.e. comfort).  2 Corinthians 1:7

And my God will meet all your needs according to His glorious riches in Jesus Christ.  Philippians 4:19

“But I will restore you to health and heal your wounds,” declares the Lord.  Jeremiah 30:17

Is anyone among you suffering?  Let him pray.  Is anyone cheerful?  Let him sing palms.  Is anyone among you sick?  Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord.  And the prayer of faith will save the sick, and the Lord will raise him up.  And if he has committed sins, he will be forgiven.  Confess your trespasses to one another, and pray for one another, that you may be healed.  The effective, fervent prayer of a righteous man avails much.  James 5:13-16

As each one has received a gift, minister it to one another, as good stewards of the manifold grace of God.  1 Peter 4:10

He does not forget the cry of the humble.  Psalm 9:12b

Lord, You have heard the desire of the humble, You will prepare their heart; You will cause Your ear to hear.  Psalm 10:17

Be still and know that I am God.  Psalm 46:10

I have set the Lord always before me; Because my heart is glad, and my glory rejoices, My flesh will rest in hope for you will not leave my soul in Sheol, Nor will you allow Your Holy One to see corruption. You will show me the path of life; In Your presence is fullness of joy; At your right hand are pleasures forevermore.  Psalm 16: 8-11

Delight yourself also in the Lord, And He shall give you the desires of your heart.  Psalm 37:4

The Lord will strengthen him on his bed of illness; You will sustain him on his sickbed.  Psalm 41:3

Offer to God thanksgiving.  And pay your vows to the Most High. Call upon Me in the day of trouble; I will deliver you, and you shall glorify Me.  Psalm 50:14-15

And my God will meet all your needs according to His glorious riches in Jesus Christ.  Phil 4:19

Wait on the Lord; Be of good courage, And He shall strengthen your heart; Wait, I say, on the Lord!  Psalm 27:14

“Therefore we do not lose heart.  Even though our outward man is perishing, yet the inward man is being renewed day by day.”  For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory.  While we do not look at the things which are seen, but at the things which are not seen.  For the things which are seen are temporary, but the things which are not seen are eternal.  2 Corinthians      4:16-18

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.  Philippians 4:6-7

The Lord is near to those who have a broken heart, And saves such as have a contrite sprit.  Psalm 34:18

“My grace is sufficient for you.  For My strength is made perfect in weakness.  Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.  2 Corinthians 12:9

In returning and rest you shall be saved.  In quietness and confidence shall be your strength.  Isaiah 30:15

The Lord is my shepherd; I shall not want.  He makes me to lie down in green pastures; He leads me beside the still waters.  He restores my soul; He leads me in the paths of righteousness for His names sake.  Yea, though I walk through the valley of the shadow of death, I will fear no evil; for you are with me;  Your rod and Your staff, they comfort me.  Psalm 23:1-4

For with God nothing will be impossible.  Luke 1:37

Now to Him Who is able to do exceedingly abundantly above all that we ask or think, according to the power that works within us, to Him be the glory in the church by Christ Jesus to all generations, forever and ever.  Amen.  Ephesians 3:20-21

Therefore humble yourselves under the mighty hand of God, that He may exalt you in due time, casting all your care upon Him, for He cares for you.  1 Peter 5:6-7

Fear not, for I am with you; Be not dismayed, for I am your God.  I will strengthen you; Yes, I will help you, I will uphold you with My righteous right hand.  Isaiah 14:10

You, who have shown me great and severe troubles, Shall revive me again, And bring me up again from the depths of the earth.  You shall increase my greatness And comfort me on every side.  Also with the lute I will praise You — And your faithfulness, O my God!  Psalm 71:20-22

For further inspiration you might enjoy listening to Praise you in This Storm by Casting Crowns.

Life Savers: Living the allergy-free life

Greetings Gentle Readers!

I have a real treat for you today (pun intended!).  In the recovery of serious illness we need to get serious about our nutrition too.  To assist us I introduce to you a dear friend who has helped me and many folks learn how to use nutrition as medicine.  I am grateful for the expertise of Cindy Jakacki-Null: tenacious gluten-free and allergy-free food researcher, healthcare professional, and Foodie extraordinaire.  Cindy talks enthusiastically about how she loves to cook, create in the kitchen, research and convert recipes, and share both her talents and tasty treats with friends and family.  Her expertise has made a difference in the lives of countless individuals, most recently a loved one facing death until her sister’s diet changed.

  1. Tell me a little about yourself and your special interests related to food. 

I have always liked to cook and especially to bake.  This is probably because growing up in our family’s household, sweets were off limits except for special occasions.  My father battled  Juvenile Diabetes. My Dad and Mom wanted to prevent any of us from getting it and were very forward-thinking for their time in their pro-health efforts.  While baking in general was discouraged, I jumped at the chance to cook meals and bake for holidays and special occasions.  My Mom cooked fairly plain foods for the picky eaters of the family and it challenged us to find suitable ingredients for everyone (even sneaking in some pureed veggies long before it was in vogue to do so!).  I am grateful to have experienced fine dining and haute cuisine growing up which peaked my curiosity in all things food. I then taught myself how to cook.

2.   What is a “Foodie” (or a better name if you have one)?

I looked up this definition because I always wondered what the specific “requirements” were; however, like anything else, they varied.  Per Webster’s dictionary a Foodie is, “someone who has an ardent and refined interest in food.”  Yet, it goes beyond that.  The term, “live to eat” instead of “eat to live” comes to mind. To be a true Foodie is more than satiating the physical appetite in addition to the mental one, and a thirst for knowledge. A Foodie may not have all the culinary answers but seeks to find them out.

3.   More seriously now, where are the best places for information for a person who needs to make major changes in his or her nutrition for medical reasons? 

 We have so many resources available now that we have the internet!  However, it’s important to be cautious because anyone can have a blog or website and present themselves as if they are experts.  I also think that the answer to this question may differ a bit dependent upon one’s health issues.  Keeping all of this in mind I recommend the following references:

1)     www.mercola.com  This goes beyond just nutrition.  Abundant amount of articles, videos, links, resources

2)     Weston A Price  http://www.westonaprice.org/basics/dietary-guidelines

3)     I recommend Paleo Diet blogs even if you are not on a paleo diet because they are a good general source of information.  More specifically, I’d like to offer websites that combine alternative, integrative medicine with nutrition experts.  The ones I have chosen also have free online radio blogs.

 Word of mouth can help a person too, especially if the “mouths” so to speak are attached to people who are knowledgeable, have done extensive research, and apply what they’ve learned to their own lives.

     4.  In your experience, where is the worst place for information for a person who needs to make major changes in his or her nutrition for medical reasons? 

I’d have to say to be cautious of more traditional medical professionals, both locally and online, who tend to be unwilling to think “outside of the box.”

Also be wary of programs/organizations/universities (in person and online) that are supported primarily by the FDA, pharmaceutical companies, businesses owning food brands…or anyone who may profit from it.  This is not to say that there isn’t some beneficial information on their websites; however, I personally examine the research closely and look for continuity of information before I will endorse and use them.

 5a. What are some of the best ways you have found for a person to start to learn new cooking or baking skills?

 To learn a new skill a person must practice, practice, practice while learning the “how to’s.”  Be open to learning new things even if you’ve done things a certain way all your life; it’s like learning to ride a bike all over again!  Learn about flavor combinations.  Do research.  Read blogs.  Read books.  Listen to free online radio shows.  Watch food TV shows and DVD’s. Your Gentle Readers can start with the websites that I’ve mentioned here.

5b. How about a few shopping tips for a person starting to purchase new and unfamiliar foods?

I recognize that moving in a healthier direction can be overwhelming in the beginning.  Start where you are and consider a few tips to get you started:

  • Before you even go to the store do some initial research on anything you are unsure about. For example, examine purchasing food in cans vs. plastic vs. aluminum. It makes a difference and can have a profound impact on a person’s health.
  • Think twice when food is on sale.  It can be tempting to buy on impulse an unfamiliar food or brand name. Look more closely at what you are buying!  Here are two examples:  1) there are brands of olive oils and vinegars that are “pure,” better tasting, and not as processed; and 2) purchase olive oils only in glass, dark-colored bottles to keep them from becoming rancid and from dangerous chemicals in the plastic container leaching into the oil.
  • If you can’t find better food choices at your local store, consider shopping somewhere else or shopping online!  Food that is pure, tastes better, doesn’t make you sick, and is more nutritious  will save you money in the long run.
  • Improving your nutrition is also a balance. For example, I prioritize avoiding the “Dirty Dozen” and favoring the “Clean 15” (organic) food lists.  (Go to:  www.thedailygreen.com for these lists.)  I would love to buy all organic foods but I can’t afford it either!
  • Talk to others who cook and eat clean foods.
  • Stock up on healthier foods, especially when you can find them on sale.
  • Read labels carefully. I know this is an old standard, but some ingredients have different names which can be deceiving. For example, did you know that another name for soy is autolyzed yeast extract?”  If I see an ingredient that is unfamiliar to me and I can’t pronounce it, I don’t buy it! The “Foodie” in me goes home and does a quick check online to determine if it’s ok for me and my family.
  • Carry a list of verboten items with “aka” names to help you identify less healthy ingredients such as:  artificial preservatives, MSG, casein, etc.
Gingerbread cookies: free of gluten, grains, soy, sugar, dairy, eggs, corn, artificial preservatives and dyes. Aren't we cute?!
Gingerbread cookies: free of gluten, grains, soy, sugar, dairy, eggs, corn, artificial preservatives and dyes. Aren’t we cute?!

 6a. Let’s get specific now for the kinds of nutritional changes many of the folks reading this blog might be making, starting with gluten-free foods.  In the beginning gluten-free foods all seem to taste so bland and grainy.  What makes them taste better and where would I find the kinds of foods that tend to taste good?

Let’s start with the second part of your question:  I rarely, if ever, buy any pre-packaged, ready – to-eat foods, so I wouldn’t be able to tell you where to buy them.  I make them myself.  Regarding why foods taste better, most professional, traditional chefs would agree: the secret is in the quality of ingredients.  This includes:  buying “clean” “whole” foods that come as close as possible to its natural state.  In other words, I recommend minimally processed foods with NO artificial preservatives, additives, artificial colorings and flavorings.  This healthier way of cooking and is the way that I am eating.  Foods taste better and I feel better overall as a result.

Also: there definitely are big differences in cooking and especially, baking allergy-free.  The more foods you eliminate in an allergy-free recipe, the harder it is to get a result that is palatable, let alone recognizable to the real thing!  In some ways, it is like riding that bicycle all over again.  Be creative but get started on doing some research and practice.   This might mean starting with your favorite blogger’s information and reading comments.  I learn a lot from the comments!

 6b.   Do you have a store, favorite blog, or website that you would recommend for gluten-free foods?

Please note that I avoid gluten in addition to dairy, soy, corn, artificial preservatives, sulfites, nitrates, nitrites, MSG, and dyes. Certain foods I only buy organic and I prefer free-range meat when possible.   Keeping all of this in mind, I offer the following:

  •  Find most meat, bone marrow, bacon, and animal fats online at US Wellness Meats: http://www.grasslandbeef.com/StoreFront.bok.   Shipping is only 7.50 per order, regardless of size, and they often, have specials.  A person can sign up for free to receive e-mail notifications and special offers.
  •  Buy organic coconut oil from Nutiva (company): http://nutiva.com/  They have frequent sales, including “Nutiva Tuesdays,” and occasional free shipping.  Sign up for free to receive e-mail notifications, etc.

 

  • Tropical Traditions      http://www.tropicaltraditions.com/  sells      various products, of which I      primarily buy organic coconut oil,       shredded  coconut (various      sizes),  organic palm oil, organic red virgin palm oil.  They also sell organic, free range meat.  TT has regular sales, but since shipping      can be costly, I usually only buy something when shipping is free.   Sign up for free and they will also send e-mail notices.
  • Nutstop: www.nutstop.com sells various types of nuts and seeds, including raw, roasted, blanched, etc.   They have good prices on large quantities of macadamia nuts, hazelnuts, pumpkin and sunflower seeds.

Always compare online stores to local resources. 

 

  1. How can I save time and money when shopping or making gluten-free foods?

It’s easier to save time and money if you are solely looking at foods without gluten verses foods without multiple allergens like I do!

  • Initially researching sources for foods can be time consuming, but once you’ve found stores (online and/or local) that suit your needs, stick to it.
  • Buy in bulk when ingredients are on sale to save money as well as to make sure that you have an ample supply on hand.
  • Make double, triple, even quadruple batches of both savory and sweet foods.  Freeze in convenient sizes so you can easily pull what you need out of the freezer to thaw and for a fast meal.
  • Word of mouth.
  • Apply “Mise en place” or the French art of having everything in its place. Prep ingredients ahead of time, not just for the meal on hand, but for meals for the upcoming week. For example, I use a lot of onions in my meals, so I peel and cut several of them and store them in the refrigerator.  Onions also freeze well for later use in meals.
  • If you don’t feel comfortable (or are uninterested in) converting “regular” recipes, there are numerous blogs with free recipes that will meet your requirements.  Email me for more information on converting recipes at:  cynjaknul@aol.com
  • Keep notes!  Write down or edit personal files with any changes you’ve made in a recipe, including what worked and didn’t work for the next time you make the dish.

In general, don’t let fear prevent you from making good tasting and nutritious meals. You never know if your next masterpiece is just waiting to happen because you were willing to take a risk!

  1. Now for another hot topic, what suggestions would you  have for a person trying to reduce then eliminate sweets or sugar in his or her diet when following a special health protocol?

This is challenging.  An answer depends upon one’s definition of “sugar.” Are we talking refined sugar? Honey? Maple Syrup? Starches? Starchy vegetables? Grains? Fruits? I haven’t done this myself so I would not be the person to ask. I’ve reduced sugars but not to a huge extent regarding fruits, grains, starchy veggies.

  1. Will sugar free foods generally cost more or less than what I am eating now?  How about gluten-free foods?

Again the answer depends upon the  type of foods for which  you are looking. Anything that is considered “different” or “specialized” will generally cost more, even if it doesn’t cost the company much to make it!  Also many companies, even those selling so-called “healthy” foods, cut corners in their ingredients by adding fillers, artificial preservatives, MSG, smaller amounts of the “key” ingredient, etc.  For various reasons, foods that have fairly pure ingredients tend to cost more. One example is “power bars” that are made only with dried fruits and nuts.

 I make most of my foods from scratch because in the long run, it is cheaper than buying prepared items, plus they are more flavorful and healthier. For example: many flour mixes at the store contain highly processed gluten-free flours such as rice and starches.  There are some mixes available with” ancient grains” but they generally cost more. 

10. Wow, you’ve really helped me get energized on using food as part of my medicine for healing!  We might need to chat again to include other special dietary needs such as dairy-free, non-GMO, organic vs. non-organic, and more!  If there was one thing you would like to say to encourage our Gentle Readers who might be stressed-out with a new way of eating, what would you like to tell them?

Be patient and kind with yourselves. Seek out support, whether it be from research, friends, family, others who are in similar situations, etc. Don’t give up!

****************************

Well we hope that this special blog post will be helpful in the journey to health for you and your family.  For more information, please feel free to contact Cindy at:  cynjaknul@aol.com  Seeya next time!  Just Julie

Looking for feedback from my Gentle Readers out there . . .

Thanks a bunch, Julie