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.