A LYME PATIENT'S JOURNEY TOWARD HEALING
This has certainly been a process and test of patience. At this point (7-months post-stem) I really feel like I have hit the neurological repair period of stem cells and have noticed an increase of symptoms, especially with fatigue, anxiety, heart racing, and food/allergy sensitivities. I feel like I have hit a wall the past two months, but I'm remaining optimistic that this is the "repair" period of stem cells. I remember Dr. Phil saying that between Months 6-9 the neurological repair can really take hold and that some patients can have increased symptoms during this time.
Prior to this point, I would say that I had about a 15-20% improvement. The first few weeks I felt the best, then I experienced a roller-coaster "recalibration period" for 3-4 months, then a month or so of minor improvement, and now the last few months have really been a challenge. As I mentioned, hopefully, I just entered the "neuro healing phase". Crossing fingers.
I have been taking the advice of Dr. Kim from my "100-day" follow-up appointment and have been focusing on gut healing and trying to move sluggish lymph. She suggested a mini-trampoline for gentle rebounding to get lymph moving and boy-oh-boy, one must really go slow with that. Rebounding can definitely get things moving in the detox department and it can be too much for your system at once. I'm up to only about 5 minutes of gentle rebounding twice per day. It has also been good for exercise in this Siberian-cold Michigan winter.
For gut-healing, I've been taking MEBO GI Regenerate, colostrum, collagen and L-Glutamine in my smoothies and maintaining a nearly Paleo diet. However, around Month 6 I started noticing that I was having a reaction to L-Glutamine and collagen. I was beginning to experience even more INTENSE anxiety about twenty minutes after taking it. It turns out, after a phone consultation with both Dr. Kim and Bob Miller, ND (genetics guru), that I am genetically predisposed to having high glutamate which can cause excessive anxiety. Collagen is also approximately 11% glutamic acid. Also, my integrative doctor here ordered a neurotransmitter test with me, and....you guessed it: I have high glutamate, the principal excitatory neurotransmitter in the brain. So, no more L-Glutamine or collagen for me.
With that said, in the past few months, I have been able to work from home 15 hours per week teaching English as a Foreign Language online, so that’s an improvement! However, I still feel so much bone-crushing, hit-by-a-truck fatigue, and the horrendous brain fog is still the same. Most days are still a real struggle to get out of bed. Even with just teaching 15 hours per week from my computer, it takes a lot out of me and I notice that I really have to rest on those days (and the day after).
Around Month 6, I really noticed an increase in symptoms (hopefully repair or healing crisis) and the feeling like I'm back at square one. At this point, I decided to have that phone consult with Dr. Kim where we discussed my 23&Me report. She suggested adding in NAD nasal spray due to the intense fatigue I have been experiencing. NAD is a precursor to ATP in the cells and helps optimize neurological functions. Initially, the recommend dose of NAD made my brain fog so much worse that I couldn't even see straight. After the Christmas holidays, I decided to give the NAD spray another go, but this time titrating up slowly. This has made a huge difference for me in tolerating it. And yes, I think so far it has given me a tiny bit of energy. Nothing significant at this point, yet. I'm about at a 3/4 dose and still need to ramp up to the full recommended amount.
Things that I am doing for supportive therapy:
DETOX: I know my body doesn't detox well. So I'm taking some supplements based on my 23&Me consult to help with detox and I try to do a sauna session or coffee enema once in a while. I am also keeping up with rebounding and dry-skin brushing. For me, having to do some form of detox every now and then seems to be essential and it helps me feel less fatigued and brain-fogged.
ESSENTIAL NUTRIENTS: I have decided to get 6 weeks of Myer's cocktails per my consultation with Dr. Kim to see if this would help my bone-crushing fatigue levels. I start those this week at my doctor's office near Detroit, so I'll give an update later.
NEUROTRANSMITTERS: Based on my neurotransmitter testing, my integrative doctor here wants me to take 5-HTP and L-Tyrosine. My serotonin and norepinephrine is pretty low and this can contribute to fatigue, anxiety and depression. Glutamate is also pretty high which can contribute to anxiety. I've ordered a supplement called "Glutamate Scavenger". I decided to give these supplements a shot. My thyroid is also still low and my gut is still in repair, so this could also be contributing to the low neurotransmitter levels.
LEAKY GUT: Since I can't take collagen or L-Glutamine, my integrative doctor and Dr. Kim have "OK'd" MEBO GI Regenerate, aloe vera juice 3-4 oz per day, colostrum, and slippery elm. I seem to be getting heart racing suddenly now from bone broth. So, there's another one that is out the window. Nightshade vegetables are definitely out to.
ADRENALS: At my "100 Day" follow-up appointment, the Global Diagnostics scan revealed adrenals and lymph in the red zone. Sure enough, when I got back home and did a 4 times/day saliva test for cortisol, I had high cortisol across the board. It was no wonder that I couldn't tolerate my thyroid hormone (I just revved, but no benefit). Per Dr. Kim, I've been taking ADHS by Biotech Research and Vitamin C (to tolerance) which seem to be helping bring down the high cortisol.
THYROID: Still a work in progress. I seem to have rock-bottom Free T4 and my Free T3 is not near the top of the range where it should be. However, I am still having trouble raising my dose, presumably from adrenals. I wish my integrative doctor here was a little more savvy with thyroid (he's not so in touch with Reverse T3 levels, for instance). So, I am continuing to ask for full thyroid labs to be sure T3 doesn't get converted into too much Reverse T3.
I'm trying to stay optimistic that this "wall" I'm hitting is all still part of the healing process. I do feel that my brain function is a little bit better and I'm trying to visualize those little stems very hard at work! Patience is the name of the game and to see those bumps in the road as healing. Eye on the prize! There's a big world out there to be living in!
Nearly 5 months post-stem and wanted to let you know that I'm starting very part-time work from home! It's only about 15 hours per week, but at least it's something! This is the FIRST TIME I've been able to even keep appointments in the last 7-8 years due to being bed and couch bound with extreme fatigue and neurological issues most of the time.
I also cleaned my apartment from top to bottom yesterday without resting, went to a concert this week and could handle it, and went to an enormous Halloween ball event that covered 8 floors in downtown Detroit. I even danced. I didn't feel perfect, but I could DO it and had fun. I crashed the next day, though, but probably to be expected. This was not possible before. It has been very "roller coaster" with many days on the couch, but I'm seeing slow improvements.
Another strange thing: The thread-like spider veins around my ankles and stubborn broken capillaries around my nose have 80-90% disappeared. At one point in my life, I even tried laser treatment for those stupid broken capillaries and it never worked. This is not a priority and I certainly wasn't expecting cosmetic benefit with stem cells, but, ok, stems, I see you thought my nose needed improvement. Another Lyme patient told me that they thought this could be Bartonella-related, but who knows.
Future stem patients: Allow your body to take this time to rest. A lot will be going on in your body and it will be in massive over-haul mode. Be gentle to yourself and remind yourself that you are healing. Go to counseling and therapy to help with the mindset. Have a good integrative doctor on hand post-stem cells and during the healing process. Encourage yourself daily to do one little thing that might be out of your comfort zone even if that means to call an old friend, then congratulate yourself on that milestone. I know it's tough when you feel like hell.
Thank you, Infusio! It hasn't been easy with flaring symptoms and even new symptoms during the first few months, but I'm trusting in the process and seeing changes happening. It's a process. Thank you for your dedication in helping Lyme patients who were at their complete wits end. Thank you for this opportunity to heal. I have a long way to go, but I am seeing changes.
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
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: