fibromyalgia – Page 12 – Jesus is for the Wounded

When it’s too dangerous: a treatment update

Published on August 17, 2013August 17, 2013 by Jesus is for the WoundedLeave a comment

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

Published on August 15, 2013October 26, 2015 by Jesus is for the WoundedLeave a comment

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

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:

¹⁴Therefore, 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. ¹⁵For 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. ¹⁶Let 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?

Published on August 14, 2013August 15, 2013 by Jesus is for the WoundedLeave a comment

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.

So where are we now?

Published on August 2, 2013August 2, 2013 by Jesus is for the Wounded2 Comments

When I wake up from a nap while travelling in the back seat of my beloved’s Dodge Magnum, I often ask, “so where are we now?” We may have been on the road travelling for hours when I finally settle down enough to fall asleep then wake up in a daze and ask this question. Perhaps I could sound like a kid who would go the next step and ask, “are we there yet?” Well since I’ve already used that question for the title of another blog post, I opted to go with the first question!

So if you are a gracious reader who has been following my story of recovery from Lyme Disease, Chronic Inflammatory Response Syndrome (CIRS), and Fibromyalgia, you have read in three prior posts about some new treatment directions (reference April 29th, May 11th, and June 20th of this year). You have also read perhaps with horror of my battle with my most noxious complication of illness: seizure attacks and all of its variants. After 16 months since the “neuromuscular events” began, I have some good news for you: beginning two days ago, the pattern of seizure attacks has started to change! Hallelujah! Hallelujah! Hallelujah!

What prompted the new direction? It appears that I’m close to landing on: 1) just the right dose of Losartan (an off-label application which has lowered TGF beta-1 levels and chest-compression pain) and 2) VIP (vasoactive intestinal peptide for CIRS which causes me to react negatively to most intense sensory stimuli in any form). Additionally, a fifth type of antibiotic taken in the past 7 months is reducing the symptoms of a urinary tract infection within a matter of hours after taking it; nothing else has come that close, a la natural or by prescription. While I am also still feeling spacey, sick, low level headaches, aches and pains, ringing in my ears and a host of other symptoms, the bottom line is that I am starting to get better! The violence and frequency of the seizure attacks/pre-tics/tic attacks is coming down. Praise the Lord!

I wouldn’t write about these things if it didn’t feel real to me. I have had false hope many times before only to have my hopes dashed with more sickness. Still I have kept the faith and persisted with the strength the Lord has provided; to Him be the glory if any good has come from this blog. It’s time now to acknowledge that it is too early in this new direction to say any more than I already have written here. So now I will end this post.

For today, please join me in being encouraged that after 16 months of hellish suffering, some relief has come. I wish I could hug you out there for standing by me. Thank you. Just Julie

And then it gets real . . .

Published on July 28, 2013July 28, 2013 by Jesus is for the Wounded4 Comments

It is now 6:39 p.m. on a beautiful Saturday and I am grateful to be able to function at a low level once again. Sometimes your own posts become your best medicine! I am so glad that I had the opportunity to explore the topic of suffering before two hellish nights. Sigh. Perhaps this suffering shall pass in time . . .

Low Dose Naltrexone, a compounded medication used off-label to raise a person’s pain threshold and boost the immune system of someone with an autoimmune disease, is now ruled out for me. Just 1.75 mg taken at bedtime the past 2 nights was enough to set off violent seizure attacks! Oh yeah, I’ve had some of these attacks more often lately, but not for 1 1/2 hours in a row with hardly a break to breathe! The duration was much longer this morning with longer breaks in between additional episodes. After 2 hours then 3 hours then 4 hours of sleep, “I am able to function at a low level once again.” This saga is a bite in the shorts for sure. I AM FRIED.

So what did I learn here?

First, it’s time for more than one-half of a day break after completing one treatment regime before beginning the next one! Healing from a chronic illness is a process, not a race.

Second, it’s time to simplify my daily routine even more. Cleaning the entire house every week is just not going to happen for awhile. This is a bummer since I am paranoid about dust accumulating, since we completed the mold remediation of our home. Maybe the dust is cleaner now?

Third, it’s time to ask for help when I need it and not just from my husband. A few ladies have offered assistance over these past 2 years of illness and I have rarely accepted it. Maybe I could use help with a few things during this particular time.

Fourth, I must continue keeping my mind filled with scripture, Christian music, Christian messages and uplifting images to ward off the temptations and lies of the Evil One. I must not fall into despair. I must not keep apologizing for the effects of an illness that are clearly out of my control. I must live as though the Lord is creating a masterpiece from the fragments of my shattered life, picking up each piece as if it were a treasure and not another burden. God will use this for His glory and my good. I must hang in there for the finished work.

Fifth, I must keep writing, including the good, the bad, and the ugly. And when I do, I will continue to leave my gentle readers with hope by the time I reach the last period. To write has been an incredible salve for my wearied frame, my wearied mind. My soul, well that’s already in the hands of my Savior.

I am hungry again! But it’s more-than-time for an Epsom salt-and-baking-soda bath and a shower! Perhaps the Beanitos chips and unsalted dry roasted whole cashews I just ate for dinner while writing this will tide me over just a little longer? Hope so.

Seeya next time, perhaps with better news. :J