A LYME PATIENT'S JOURNEY TOWARD HEALING
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
I was at the Infusio every day for 4-5 hours which is exhausting since even getting up and showered is exhausting for me. We had one "free day" between the two weeks, and we arrived with a spare day before treatment and left with two extra days so that I could recover from the procedure. There were a few days that I had enough energy to rest when I got back from the clinic and we were able to enjoy a nice meal or visit Griffith Observatory. Brandon is vegan, so he was in love with all of the vegan options available in L.A. (and so was I)!
Some highlights from the experience so far, aside from the clinic and getting treated there:
Uber and Lyft! What a handy way to get to and from the clinic every day! Uber and Lyft are everywhere in L.A. and so easy to use. I thoroughly enjoyed my conversations with my drivers and met so many interesting people from around the world. One driver kissed my hand for formerly teaching English as a Second Language. Another driver was a retired internationally-known photographer --looked him up later. All are now educated on Lyme and stem-cells.
Griffith Observatory: One of our Lyft drivers suggested to visit Griffith Observatory for a low-key "thing to do" if I had energy. Well, I wouldn't say it was "low-key" for a Lyme patient since the drive up the "mountain" was twisty and not exactly fun for people with vertigo. The crowd there also felt a bit like Disneyland - even on a Thursday. It was neuro-sensory overload, but I would say it was worth the discomfort for the view and picture opportunities.
Manhattan Beach: This beach was also recommended to visit by one of our Uber or Lyft drivers since we were told it was more of a mellow beach than the beach at Santa Monica. It was located just south of Santa Monica. This was our big excursion on our free day to snap a few pics and to sit at the pier. I was too tired to walk around or to spend the whole day there, so it was perfect just to sit.
Great Mexican Vegan Restaurants: With Brandon being vegan and with me having a Paleo diet, the options were plenty in L.A. There are seriously more vegan options there in three square blocks than in all of metro-Detroit. I was feeling well enough to go out to eat a few nights and we found a couple of remarkable Mexican vegan/organic restaurants. The first one was the swanky Toca Madera with a Day of the Dead/Sugarskull theme which is apparently a celebrity hang-out. And the second was the open-air Gracias Madre restaurant with a gorgeous patio. Photos below are from Toca Madera's bathroom and back eating area.
West Hollywood: We stayed in West Hollywood (WEHO) for the first week, right on the Sunset strip with a Trader Joe's within a 5-minute walk. So many cool little shops there (or so Brandon tells me, since he was the one exploring). We ventured straight into the heart of touristy Hollywood (about a 20 minute drive) on my free day before treatment, and left as soon as we stepped foot outside of the Uber vehicle. Unless you like to be accosted by tour bus guides and mobs of people, this isn't a recommendation, especially for neuro-sensitive people. At the very most, we can say we saw it. We also saw a Jack Sparrow peddler.
The Cut: Brandon also wants me to include where he got his beard trimmed. He went to a place called The Cut which was voted as one of L.A.'s top 10 barber shops. It also featured heavily tattooed men and buffalo heads. Here he is post-beard trim and engaging in pool-boy duties. I really could not have done this trip without this sweet boy.
Week 2 Down
I am feeling more energy since being here! Overall, I am feeling less fatigue and less brain fog and my spirits are up! Brandon even mentioned that I seem more alert and that I'm talking more. Yes, there are certain IVs that seem to kick my butt and wipe me out, but I seem to recover quickly from them and overall, I'm feeling a bit better. Two weeks of optimizing the cellular terrain must be doing something.
Ten-pass ozone was administered once each week. It stimulates white blood cell production, kills pathogens, improves oxygenation, helps the body fight infections, and stimulates the body's metabolism. It's an interesting process since you are an active participant and have to pump a soft foam ball to help vacuum a pint of blood from yourself into a suspended container. The collected blood is given medical grade ozone and then it is pumped back into you. This process is done 10 times. It made me feel a bit woozy and I slept for the entire afternoon on those days, but nothing too challenging with the treatments despite how intensive the program was.
Our first rental wasn't available for the full two weeks, so we rented this place near The Grove which is also just 4 miles from Infusio. It was actually nice to have a little change of scenery for the second week, especially for Brandon since he was working from the apartment all day. Both locations gave us a discount and were much cheaper than getting a 2-bedroom at the Residence Inn in Beverly Hills. With L.A. traffic, it takes about 20-30 minutes via Uber or Lyft, depending on the time of day. The ride is super easy and I'm educating Uber/Lyft drivers about Lyme and stem cells one driver at a time!
Our second location is also comfortable and very clean and I am having no mold reactions. Huzzah! Both locations also have a Whole Foods or Trader Joe's within a 5-10 min walk. Double Huzzah! This rental is another respite for rest and relaxation. With Brandon working at the apartment, we also wanted him to enjoy his time as well. Hence, the "need" for a pool and gym. Twist my arm. While I am at the clinic for 4-5 hours each day and am very tired, I am trying to find some energy to enjoy the beautiful sun while we are here...then I crash.
If you would like to see a list of AirBnBs that patients have recommended please see Places to Stay.
The best part of treatment is wheeling the IV pole out on the sunny rooftop and hanging with my buddy, Hollis the nurse. All is going well! Some periods of feeling wiped out after certain IVs, but overall, feeling more alert, having more energy, and having less brain fog! My bladder pain that has been troubling me on and off since September disappeared after the first day of treatment! I really don't want to leave this place. The Infusio staff is so kind and supportive. I haven't felt this type of positive energy from a medical clinic ever or in my years of treating Lyme disease.
The Beverly Hills Infusio clinic definitely operates differently from that of a typical Western medical office. For instance, there is no "waiting room" or barrier of a front desk where you receive treatment. There is a "transparent" feel to the penthouse office suite that you immediately sense from both the aesthetics of the clinic and from the open communication with patients. Their main office is located on the 3rd floor and that is where you check in on the first day and receive a patient orientation. The atmosphere is calm, supportive, and tranquil. Several of the staff members are former Lyme patients themselves who have gone through the program and are in complete remission (or near remission). This brings comfort to the patients getting treatment. All of us feel like we are in good hands.
While there were times that some of us felt that we didn't get a full explanation of the treatment protocol, we felt comforted to "let go" of the control of knowing every detail of our treatment. This seems to be part of the philosophy at Infusio - that part of healing means "trust" and to "give in" to healing. I'm starting to understand that now. I'm starting to understand that having such tight control is part of the "sick patient rut".
Next week brings the same type of IV treatment based on each day's Global Diagnostics scan and we'll have our stem cell procedure on our second to last day. For those wondering, my IV therapies this week included rounds of the following: