A LYME PATIENT'S JOURNEY TOWARD HEALING
Well, here I am, 100 days post stems from Infusio! I can't believe it has been 3.5 months already! The end of the "100 days" only marks the first 3-4 months where the stem cells are replicating and the body is trying to adjust. After this period, the stems are supposed to really get to work and it takes approximately one year or so to see the full results of what the healing stems can do for my immune system battling Lyme disease and co-infections. There's about an 85% success rate and I'm still holding on to that!
I haven't made a post in a while because I have been trying to focus on activities that I can handle aside from the Internet. It is definitely a mind-shift to get out of the "sick patient" mode when you still feel sick, but I believe it is so critical for healing. More on that later... So where am I at now? Here is a run-down of the last 3.5 months:
100 Days Stem-Cell Replicating Re-Cap
My Global Diagnostics scan at my follow-up showed that my body is still working hard and processing, and Dr. Kim said that my stems are most likely still replicating based on that. The scan also showed that lymph drainage seems to be sluggish and my gut and adrenals might need extra support (big red flag there on my adrenals). Sure enough, my saliva cortisol test from my local integrative doctor came back high at all 4 points throughout the day. The scan also seemed to reveal that my immune system is working better and inflammation is down!
All-in-all, I would say the "100 day", 3-4 month replicating period has been a period of up and down symptoms with a shift in energy and mind-set. I'm ready for the stem cells to really get to work and I'm embracing the process. Patience is key.
I've been reading a wonderful book recommended by a patient in my stem cell patient cohort. The book is How to Heal Yourself When No One Else Can, by Amy Scher and essentially, it's about how to clear emotional and energy blockages when going through a deep healing process. The author was also a Lyme patient and went through a stem cell treatment program as well. The book reinforces the concept of trusting the process, letting go, and shifting the mind toward peace and acceptance so that healing can begin. And guess what? I noticed that I can actually read a book and remember what I'm reading!
In between embracing healing, guided meditation, yoga, and making kale smoothies, I have been finding some energy to get into a few things that I love. I signed up for an Argentine tango class and I'm engaging in some photography again! While I have only been to one introductory tango class and the energy to do photography outings is limited, I am feeling the windows of desire to do these things -- something that I didn't feel before due to being so sick. Below are some of my photographs from an outing visiting the historic, art deco Fisher Building in downtown Detroit, my hometown that I never truly got to explore. It was an outing that I wasn't able to do prior to this treatment. Bring on more life, my little stemmies!
It has been about four weeks since my last post and boy, the last few weeks have been a bit challenging. I'm at Day 55 (approximately 7-8 weeks post-stems).
I think I hit a crashing period post-stems. I was having more feel-good energy the first 3 weeks, then, BAM! Week 4 hit with pretty tough depression, weepiness, feeling very irritable and feeling like I'm jumping out of my skin with anxiety. It almost felt like I took too much thyroid hormone, but I didn't. I wasn't sure if this was just the typical "crashing" and "adjusting" phase that many patients experience post-stems, or if this could be possible build-up of the white powder supplement I was taking from the clinic to help with detox and neurotransmitters. It crossed my mind because the only two changes had been:
1. stem cell treatment and subsequent body adjustments
2. the white powder supplement.
I remember Dr. Phil saying that it could take 4-6 weeks for the powder to build up in the system and I was at 4 weeks when the strange agitation and weepiness hit. I was thinking maybe it was too much for me somehow. He also said that around Weeks 4-9 post-stem could be a time that is really tough for some people. This is because there is a lot of recalibration and changes within the body adjusting to multiplying stem cells. We were told that there could be many fluctuations in thyroid hormones, sex hormones, and neurotransmitters. Whatever the case, I weened off the white powder supplement, and those agitation symptoms disappeared. I'm not sure if it was related, but I'm glad I haven't had them since. Whoo-doggie. What a ride!
Weeks 5-7 has also brought more fatigue and less motivation. I just haven't felt some of the same moments of clarity and more energy as I had in Weeks 1-3. But today, I'm feeling moments of spring in my step! Actually, all day! The roller-coaster journey is real during the 100 days, for sure.
A few weeks ago, I started a slow body conditioning class and a gentle yoga class once per week. So, the good news is I have a little more energy to do these things! My yoga instructor even mentioned that he noticed improvement in my ability to get right in and hold the poses. The bad news is that this 40-year-old injured her back in the beginner body conditioning class trying to keep up with the 20-year-old limber instructor.
WORD OF CAUTION: Do not try to keep up with 20-year-olds during this time. I repeat. Do NOT try to keep up with 20-year-olds during this time! Remember "very gentle" exercise even when you think it's already gentle.
It ended up being the worst back injury I ever had: couldn't stand up and in excruciating pain. I was sure I slipped a disc. On top of it, I was so worried that this would hinder the delicate stem cell replicating process during the critical 100 days. I remember Dr. Phil saying that we need to keep stress and inflammation to a minimum during this time since the stems may go to the inflamed area and perhaps less will go toward replicating. We're supposed to take as little as possible in terms of medication or supplements during this time, but Dr. Kim said that short-term pain medication and muscle relaxers would be okay. Dr. Phil reassured me that this shouldn't hinder the process as the stem cells will still go to mobilizing our existing stem cells that are essentially "dormant" or "in reserve".
It's important to remember during this 1-year post-stem cell treatment period that the first 100 days (or 3-4 months) the body is busy replicating stem cells, which in more cases than not, seems to cause A LOT of ups-and-downs with symptoms as the body is trying to recalibrate. After the first 3-4 months, the stem cells should really get to work to repair and fight off infection and rebuild the immune system. We were told that neuro symptoms (my worst symptoms) may not see improvement until the 6-9 month period for many patients. I'm seeing some shifts already, but I'm crossing fingers and have my eye on the prize.
From a former patient who is now completely well for three years now and was one of the worst Lyme cases Infusio has seen. He gave me permission to post his inspiring message. Stay positive. Stay strong:
I am just about three weeks post-stem at Infusio and while I'm having some super-swell roller-coaster emotions and ups-and-downs with fatigue and other symptoms (to be expected per the doctor), I'm finding that I am having improved energy overall! It's nothing close to where I should be yet, but here are the improvements I am seeing:
Some things that have not improved yet (mostly neuro-related), but I'm still very early in the game with the healing process:
I've only touched on some of the symptoms that come to mind. As many of you know, Lyme and tick-borne infections affect nearly every part of the body. Most of my symptoms are neuro-related and from what the doctor tells me and from other patient experience, the neurological symptoms take the longest to heal.
The stem-cell healing process is certainly a process of having patience. During the first 100 days the body is going through many changes to try to recalibrate as the stem cells are replicating ten times every ten days. So far, I have experienced a roller-coaster of flares, crashes, and major mood swings, but overall I feel changes happening. I get spurts of energy where I have a tiny glimpse of what the "old Denise" felt like. I know from speaking with other patients and with the doctor that for many patients, they don't see a huge shift until after the 100 days. Some take off and get better and better after stems, while others ride the wave and may not see a real shift until getting to months 4, 5, 6, 7, or 8! Patience is needed for sure while trying to stay focused and positive.
1. Walking: Taking a morning or afternoon walk (albeit slow) helps me with mood and having more energy throughout the day. Some days I simply can't, but that's ok. Before stems, I didn't have this energy to even THINK of walking, but I still have to force myself. It's getting easier, though.
2. Reminders/Affirmations: Reminding myself daily that the stems have just replicated one time over each day and that they are hard at work. I have to see a visual of this daily to remind myself. I'm also trying to remind myself that I'm a "going to get better person" now instead of a "sick person" and I'm trying not to obsess. I am trying to focus on the phrase "being free". I had to leave most sick patient Facebook groups to help get out of this mind-set. Packing all of my supplements collected throughout the years in a box and out of sight was empowering. I also just gave away about 3-months worth of IV PICC line supplies to someone that saved her about $500.
3. Writing: Another thing I'm finding that is helping with motivation is typing things out in updates or in this blog. So, if you are reading this, THANK YOU! You are helping me! For some reason, it is making me feel more accountable. If I type that I'm thinking about doing yoga, for instance, it makes me do it. If I type that I'm having a better day, somehow it keeps me going and propels me to have another better day. Or, at least it's a documented reminder that I CAN have better days when I'm feeling like dog-doo.
For me, writing it out helps to keep my eye on the prize. Otherwise, I feel like I'm just floating out there with a myriad of weird roller-coaster symptoms. It helps me make sense of it. It's almost like re-training your brain. If you say things out loud, it sticks. For me, it sticks even more when I write it out. It's sort of reinforcing the concept of, "Your thoughts become your words; Your words become your actions; Your actions become your habits...". It is helping my brain reprogram into healthier habits - all of which, I think, contribute to healing and beating this.
For more information:
About Stem Cells
Stem Cell Related Forums and Sites
I'll miss you, Infusio! What a kind and caring place. I will remember all the positivity from Infusio and the help getting me there! The following photo has been up on my fridge since I got home to help remind me of that positivity and that my stems are hard at work.
The First 100 Days
Although I was quite sore, the two days after the procedure I had more energy and had less brain symptoms. However, I crashed shortly thereafter. I am told that this is typical as the body is trying to adjust to the stems hard at work. The doc said give it a full year of allowing the stems to do their job. The first 100 days the stem cells are replicating approximately ten times every ten days, so the body is trying to recalibrate during this time and there could be a lot of ups and downs.
1 Week Post-Stems
Now that I'm 1-week post-stem, man, do I wish I could feel like the way I did during the 2 weeks at Infusio! I think I am feeling my body trying to figure out what is going on with these billions of replicating cells. Since being back home this week, I have felt more fatigue and brain fog and had feelings of depression/sadness. A few times, I had uncontrollable weepiness. I know this feeling isn’t “me”, but just my body trying to recalibrate. I am also noticing that my dry, inflamed eyes have flared up, making it pretty painful to keep them open. This happens a lot when my body is adjusting to a new medication or supplement, so it doesn’t surprise me that this symptom flared up. I have also felt periods of feeling edgy and irritable on top of the depression that is lingering. I'm guessing all of this could be hormones trying to adjust since I’m also noticing a major pimple break-out. Woot! Fun times.
However, despite some of these periods of increased symptoms, I have also felt periods of feeling more energy and feeling more positive. Yesterday, I went for TWO twenty-minute walks...in the heat and it felt great! I was also feeling a positive mood shift when just three hours prior I was a Crab-A-Saurus Rex.
I’m trying not to fall back into old routines. I live by myself, so this is a challenge especially since motivation and energy is low. My mom comes over 2 times per week to help out and she is continuing to do so. However, yesterday, I told her that I need motivation to get my body moving, so now we are making a point to walk around the block when she is here. I’m also looking into joining a gentle yoga class once per week, and hopefully, as things progress, I will look into physical therapy or a trainer. It’s hard to get my body moving, but I know I need to make this effort. I keep thinking that moving oxygen through the blood is so good for the cells!
I also need to keep up the positive energy that Infusio had while I was there. I know I need that sort of environment to thrive! I'm looking into working with a psychologist next to find those outlets in my life. But right now, I'm going to try to take a walk since I feel a tiny burst of energy while it lasts. Up and down.
For more information:
About Stem Cells
Stem Cell Related Forums and Sites