We had planned on doing treatment a full twenty weeks, which is close to the maximum amount of treatment time the doctor in Germany does. But after much prayer and analyzing, we decided to stop treatment at week fifteen. The majority of our symptoms have eased and I do believe that whatever healing and benefit we were to receive from this treatment has already been completed. I took one much needed week off with my family to just "be still", so I am late posting this update. Last Sunday would have been our start of week sixteen, so today makes it exactly one week free from treatment. It's glorious. :-)
I have been fairly silent about my children's treatment through all of this for their sake, but I can tell you that as a mom, I am so glad it's over. It has been a long road for us three....a long road also for my precious husband and oldest son (who is not in treatment yet). They have been supportive and compassionate to us through it all, helping us see joy in the midst of a trying time. Levi was not able to make it to every IV day, but several times it was just too hard to do alone, and one of our children just needed DAD. He would leave work to come, and somehow the moment didn't seem so dark, didn't feel so lonely. Dads hands would hold and comfort crying son, and bring a naturally joyful personality that we needed so badly. Their daddy's big strong presence seemed to make the scary less scary...yes, I saw some beauty in sad places. Places I would really rather never go again.
So many loved ones showed support both in text, Facebook comments, likes, prayer, hugs, visits to our infusion days, meals, groceries, offers for help, gifts, help cleaning at home, flowers (many times!) an honest conversation and genuine concern. Through the clouds, there were so many blessings. Our family is deeply humbled and so grateful. We are excited to be on the helping end of things- we are ready and praying that we can move right along and turn the page on Lyme healing, and bring on some helping to others who are where we have been!
Rather than try to describe where things are at, I will just list previous symptoms and then update where I am at today. This is a list I have copied from an earlier post entitled "it all began in 2012." It is lengthy, so I will try not to add much to it. I did not expect to have to process so much emotionally after watching my children come through this grueling treatment, so I don't feel like I have much capability to add any more to this post other than basic information. If you are following this blog because you are looking at going through this treatment, please feel free to email me any questions, and hopefully in the months to come I will have much more information to share.
So here goes my symptoms list, past and present.
Extreme fatigue
- Present but soooo much better
Sweaty at random times
- Yes, sometimes still! (Babesia is a jerk)
Anxiety
- No!
Drenching night sweats
- Minor night sweats (currently doing hormone therapy so we will see if that helps. Could also be Babesia.)
Nausea, especially at night
- Nope
Ear ringing
- No. Although I did notice it for a tiny spell a few weeks ago. I would usually get it a few times a week, so it's not like that anymore at all.
Hot flashes
-Rare
Vision flashes
-No; my eyes are sore at times still. Like I need to close my eyes.
Achy- constant and worse at night,( like a case of the flu) migrating from hand to leg then other leg etc.
- At times I have joint pain in my knees but it feels different...it still bothers me and makes me fearful that Lyme has not left all the way, but it doesn't migrate anymore. It just feels like very tired knees and is no longer a debilitating need to sit down when I feel that way.
Occasional deep stabbing pains in random body parts lasting for seconds, then leaving
- I forgot about this symptom- I haven't noticed this for a while!
- I forgot about this symptom- I haven't noticed this for a while!
Hand pain in joints, burning at times
- No!
Weakness with grip
-I do still feel weak at times, but is better
Heart flutters
- Yes.
“Shaky” all over
-No more. Sometimes after exercise I feel funky, similar to restless leg. But I don't feel faint anymore.
Neck stiffness
-No. Tight muscles in my neck, yes.
Headache, tightness
- Sometimes. Still have random sinus pressure at times. Not lasting all day...I had a reaction to a chlorinated pool - I think my body is sensitive to toxins and mold. Wood smoke also gives me an immediate headache.
Struggle with feeling hopeless
- No. I know the depths of this one and I am so grateful that the Lord has worked on my heart, but also there was no way to get out of this one without PHYSICAL help. It was not just my emotions, but my brain begging for relief. I am so thankful that I feel hope alive again. My heart could burst with thanks.
Feel overwhelmed
- LOL. Yes at times. (is this a symptom of life?!)
Have to fight off confusion, don’t know why
- I have clarity of thought!
Loss of consistent thought ability
- I can have a thought start to finish. No longer does it feel like I can't sort out the "background noise" of life. I can organize my thoughts and make sense to myself again.
Inability to multi-task
- I do still struggle a bit, but its more because there is so much on my mind. I am trying to get my life back after feeling like it fell apart and there is a lot going on.
Heavy arms and legs- feels like I am walking through mud, lifting 50 pound weights
-No. I am tired for sure, but I don't feel like I am constantly pulling a uhaul trailer behind me, loaded down to the max.
Decreased exercise stamina, get dizzy and faint
- I still am not up for running (but for short distances) and I get nauseated afterwards. My adrenals, thyroid, hormones and glucose balance is a bit of a mess right now...my body has some healing to do still in this area. It's hard to be patient because I miss running.
Arms go numb while driving or trying to hold my arms up to read a book in bed
-No!
Memory loss- short and long term
-Some times I still have a hard time hanging on to details, but I am 90% better than I was. Life makes sense again. I can't explain what a victory being able to say those four words are. I will never take my mental tracking for granted again!
Must use calendar and lists to remember anything
-(smile) I still use a calendar for everything but I am no longer in a fog. I can grasp whats coming up in my week rather than feeling like a ghost of me made plans and can't remember doing it!
Need for sleep, even after a full night’s sleep
- Mostly I no longer lay down during the day. That is huge. I am still tired, especially on the weekends and I notice it in my children too. But I don't sleep the long hours like I used to. I am up in the mornings by 6:30 because my body wants to be up. (I heart that)
Feel like I am losing my mind
-Praise be to God, only very rarely do I feel like this anymore! I think I am traumatized at life, LOL, still trying to come to grips with what I thought life would be like and where we are at right now. The Lord has allowed us to walk a hard season that I probably could not fully explain to anyone. But I don't feel like my mind is incapable anymore...I feel sane. It was a joke for so long, but there was such desperation behind it. I would say "I am crazy!" and mean it. Now if I say it, it means I am having a crazy moment, or a crazy day- not that I honestly feel like a shred of the person I was.
Sad and unexplainably overwhelmed by life
- Hmm, still healing on a soul level, but very much less overwhelmed.
Sudden bouts of needing more oxygen while laying down, but breathing fine (called "air-hunger")
- Unfortunately, I do still feel this every once in a while. (Babesia!)
Anxiety over more than one event in a day
- No :-) What a joy to function again
“barely hanging on”
- No, but I have some tools to function, haha. I have brought coffee back because I am an addict that was off of it for far too long. This is terrible for my adrenal, I know, but I am giving myself some grace for a few weeks...maybe a month. LOL
Low thyroid (keeps dipping)
-Yes. Just changed medication. Hoping this will help balance things.
Low cortisol (keeps dipping)
-Yes. I was at 8 for cortisol when I should have been around 18. Total bummer, but healing will come with time.
Increased bruising, possibly due to clumsiness
- No
Eyes feel heavy, have to close them sometimes
-Yes
Highly light sensitive
-Yes
Dairy intolerance (one week of deep stabbing pain in intestines if ingested)
-Still dairy free
Low blood sugar (blood tested at 51 mg/dl in 2014 and 78 mg/dl in 2016)
-Yes, still struggle with hypoglycemia
Occasional brief confusion while driving (forget where I am supposed to be headed next)
-No! Totally am rocking driving.
Can’t make fast decisions, have to work hard to “think”
- Has totally cleared. Sometimes I still need quiet to think when life gets too loud. But I don't feel mentally incapacitated anymore.
Loud noises make me angry and anxious- like everything in me is on high alert
-I can filter out noise now. It is not a hindrance to me in conversation (such a blessing.) Not that I like life loud or crazy right now...
Problems with face recognition after meeting new people
- I can still have a hard time placing people and I feel like there is a segment of my life that might always remain like a murky dream.
Can’t hold conversation: processing information and talking especially at a fast pace confuses me…this makes me a bit socially awkward (LOL)
-Socially awkard?! Ask someone else. (Can social normal-ness actually be judged by one's own self? LOL) But I don't need to take time to process anymore. All my cylinders are firing, finally!
Have episodes of feeling that I might lose consciousness
- This one makes me sad remembering how desperate I was. NO MORE.
Very low vitamin D levels
- Yes.
Very Low iron levels (iron infusions were recommended)
- Level climbed but still very low.
Various UTI infections (previously have never had any)
-Nope
Kidney pain, consistent even after we confirmed that there is no infection
-Sometimes, only on my right side in my back.
Body pain upon standing after sitting on floor or criss-cross style, I limp until my joints get moving again
- No :-) My knees are still sensitive but 85% better than what they were. Life is soooo much more comfortable!
Sometimes with loud noise/chaos coming at me I have to cover my ears and close my eyes- feel crazy
- Loud crazy for long periods of time make me exhausted but I don't feel crazy anymore. (I am laughing at myself, but it was seriously bad. How did my children handle me?!)
At times I am unable to verbalize simple things. Words get caught as I can’t dredge up what to call “that thing in your hand…(a cup)” as I am trying to instruct my children
-
-
Greater difficulty at math…scratch that- impossibility. Haha.
- Hmmmm :-) I would attempt it now.
Bouts of anger that I later feel was a complete over-reaction
- My husband has coined this term "I.A." It's short for "irrational anger." To be fair, I should let him answer this question...but I will say the desperate anger is not in my heart. Except for certain days....LOL. But actually, in all honestly, my children have noticed and told me that I am much more peaceful. I don't know where the anger came from, other than my lack of self control in a world that I felt was completely out of control. I look back and remember that the anger came when I felt total panic. I was hanging onto a shred of functioning, and anything that rocked the boat too much sent me into a tailspin. Like too many dishes in the sink...I knew that it would take a full day to get it done with my drops of energy allotted. I had to be very careful about what I committed to and basically became a different person, not my capable self. So much of what I loved in life had been taken away by a monster called TIRED, more scary than any tired I had ever felt before. I felt like I was constantly letting everyone down. I had so much frustration and fear locked inside. I never want to go back. (But if the Lord did take me back, I would leave those dishes in the sink and choose relationship. This has always been my struggle...hanging onto what matters rather than what I feel helps me in my orchestrated saga - something I try to manufacture (organization) to bring me a peace that only my Savior can give. Even now, I am working hard to focus on things that matter. I can easily only grasp for what meets the eye.)
My words don’t always match what I am trying to say, like it’s a bit disconnected
- Yes still at times when I am distracted. Not in typical conversation anymore (that I am aware of, LOL)
Also sometimes feel disconnected from reality- recalling memories feels like recalling a dream
- I have described this to people and still feel awkward trying to explain it. It's actually called disassociation and it's common with Lyme Disease once it's crossed the blood brain barrier. I am happy to say that I feel fully in reality, no longer like a fragment of myself!
Head-ache’s that feel like sinus pressure
- Yes, still with certain exposures (like I listed above, mold, wood smoke and some chemicals.)
Twitching, ranging from minor muscle spasms (I can see my muscles twitch in my leg) to convulsive movements that move my whole core/legs/arms mimicking a small seizure but I am coherent the entire time…this is a more recent symptom
- NONE!
Emotionally usually either “low” or “numb”
- I am still processing this hard season, but I feel higher than "low" and not so numb anymore. Not sure how to answer this one, but definitely SO MUCH BETTER.
Swollen glands by thyroid, swallowing is strained (two year symptom, sometimes worse or better)
- Yes. Still hard to swallow. Still swollen. My thyroid is low again, and my doctor feels that this will get better with updated medication dose.
Sore throat often, often have to clear throat
- Yes on clearing throat.
Decreased hearing ability, fluid in ear drums
- Still feel congested at times.
Overall, looking back on this list, I feel so thankful. Even if we get a blood test back that is not great news, I feel like so much of life has been given back. If even for this much relief, I would do this treatment over again. It is natural, it raises your bodies natural immunity and it worked for us! I will be very transparent in the coming weeks regarding my lab results and my children's so that the results will be in black and white. Regardless, I feel that it has been such a blessing.
We will be taking two weeks off, doing nothing except rest and multi-vitamins. This insures the most accurate testing because of the lab we are going with (information will be detailed in a future post).
Whatever our lab results may be- to God be the glory!
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| Last day of treatment. I had many precious souls join me on our last infusion day. Pictured here is my sister, Becky. Sis, I love being your sister and I love you. |
