I know a lot of you are wondering how I was feeling pre-Stem Cells and what treatments I have done pre-Stem Cells. I am working on a post that covers my previous treatments and protocols but in the meantime, I want to share what symptoms I am still dealing with. I have come a long way from my original list of symptoms before I started treating Lyme, but still have some stubborn issues going on.
After being in Lyme Specific Treatment for just over 2 years (27 months), I feel 60% better most days. This does not include the previous 2 years I spent before I knew I had Lyme working on things like my gut and Candida etc. So in total, I have been in intense treatment for over 4 years. I do have some days where I feel worse and need to rest, but overall I had been on a really good streak up to cavitation surgery. After cavitation surgery, I had a really hard time recovering and it took me about a month before I felt back to where I was pre-surgery. Right before Stem Cells I finally started to feel the benefits of Cavitation Surgery and started feeling better then pre-surgery.
Going into Stem Cells, the majority of my remaining symptoms are Brain and Neuro issues as well as an overactive Immune System.
Here is a breakdown of my remaining symptoms prior to going into Stem Cells. My hope is that the Stem Cells address these remaining symptoms and get me back to 100%, or at least close to it. For the most part, it seems that the worst of all of my symptoms have bubbled up to my brain. Having brain symptoms is one of the most debilitating symptoms I have dealt with the past 4 years.
BRAIN / NEURO SYMPTOMS
TERRIBLE BRAIN FOG
I feel really spacey all the time and have a hard time thinking and concentrating on anything. It feels as if my brain has been shut off and confiscated for 4 years. This has been one of the most frustrating symptoms for me and nothing I do seems to chip away at it. Some days my brain feels better and I can get a little bit of work done. Others I have no idea what I am doing and can’t think at all and quite frankly feel like a vegetable waiting for the day to pass in hopes that I wake up tomorrow feeling a bit better. It is no way to live. Even simple tasks are difficult to complete and trying to concentrate is impossible. People don't get how I can have such a hard time thinking when I look totally fine on the outside. Its the curse of Invisible Illness.
SHORT TERM MEMORY ISSUES
This symptom is equally as frustrating as brain fog and they go hand in hand. My short term memory is non-existent. After a few minutes my thoughts usually come back to me, but in the moment I can’t remember anything. I can’t remember why I walked in a room, why I opened the fridge, if I washed my hair or face in the shower already. I forget what I am saying mid-sentence and also have word finding issues. My thoughts just leave my brain instantly.
It's really frustrating when normal, healthy people say this happens to them all the time to or that their memory does not work. I used to be normal and healthy and forget things here and there and I can tell you this is TOTALLY different. This happens to me with every single thought I have. I have to concentrate so hard to think and then when you combine that with the brain fog it's a mess. Evernote and post it notes have become my brain for the past few years.
I also feel extremely ADD. I will start working on one task and before I know it I have 20 other tasks open and can’t seem to remember to finish the first one and have a really hard time staying focused on one task. Could that be part of living in modern day? It could, but I never had issues like this before Lyme so I highly doubt that is the case for me. On the contrary, I used to be a very focused and organized person. I got a Masters Degree in Architecture, got my Architecture License, which is no easy feat and started my own design company. Trying to achieve those things the way my brain works now would have been impossible.
LIGHT & SOUND SENSITIVITY
This is another very frustrating symptom. My eyes and brain are very sensitive to light. My biggest issue comes from light contrast. It's almost as if my brain can’t process all the light and contrast. It has gotten better but it still is a sensitivity. If there is light coming in from a window or I look at a computer screen in a darker room I get a really bad headache, my eyes can’t focus and I get exhausted from trying to process the information. I also have to wear sunglasses anytime I am outside because my eyes and brain have become so painfully sensitive to light, even on overcast days.
Noise is also a similar sensitivity. I used to be the kind of person that ALWAYS listened to music. In the past 4 years, I have barely been able to listen to music. Sounds overwhelm me, especially at the end of the day. It's almost like having sounds or music are an extra thing for my brain to process and it just can’t handle all the overstimulation. It makes me feel exhausted and sometimes the music does not even sound like music, it just sounds like a montage of sound my brain is trying to process. When I can't process the sounds it makes me feel really anxious.
For the first few years I had Lyme, I had to wear noise canceling headphones all the time to try and filter sounds because they made me feel so debilitated. Now I can occasionally listen to mellow music at low volumes for small periods of time. It's super annoying and one of the symptoms I find the most frustrating.
I definitely have some random things still going on with my nerves including Neuropathy and tremors/twitching. These symptoms are not too obvious to most people that see me, but if you look closely you can see my fingers constantly twitching from nerve issues no matter how still I try to hold my fingers. It's a symptom that really bothers me. It started only in one finger but has progressed to all my fingers on both hands, but much worse on my right for some reason.
Crushing fatigue has been one of my most debilitating symptoms. When I was at the worst with Lyme there were weeks at a time where I could not get out of bed and taking a shower or going to the grocery store would exhaust me for days. Fortunately, those days seem to be far behind me, but I do still struggle with fatigue.
Thymus Therapy has been the thing that helped me the most with fatigue but I still am not back to my normal energy. A big factor in energy is how our mitochondria are functioning. Unfortunately, Lyme and being chronically ill decimates our mitochondria, but the Stem Cells should help repair it.
Now my fatigue looks more like being really tired at the end of the day or getting wiped out for days after attempting to work out. I am able to do more during the day, but by 5 or 6pm I start to get very, very tired and have to rest to replenish myself for the next day. Some days I don’t crash as hard, other days I crash earlier in the day and all I can do is let my body rest and start fresh again the next day.
Excruciating joint pain was also one of my worst Lyme Symptoms but fortunately, that is also something that has improved dramatically. I still get achy here and there, but nothing compared to the constant pain I used to be in on a daily basis.
Now instead of pain, I am left with a strange stiffness in all my joints that makes me feel like I am 100 years old. I think this stiffness is due to inflammation because whenever I have done treatments that reduce inflammation my stiffness feels relieved. The stiffness is most apparent in my hands and knees for some reason. I can’t straighten my legs all the way straight because my knees are so stiff and tight. I am looking into starting to do some stretching at a place nearby called Stretch Lab. It looks like a good introductory to starting to work out again and also getting my body stretched before I venture back into doing yoga again. Right now even gentle yoga classes are too much for me and leave me wiped out for days.
I also have issues with Costochondritis which is inflammation of the connective tissue around the ribs. I have struggled with this for about 3 years and it is excruciatingly painful when it flares. When it first reared its ugly head I almost went to ER in tears because it felt so painful. Now it tends to flare if I walk too much or try to exercise which makes it hard to try to attempt to start doing light workouts again.
When it flares it sticks around a few weeks and even slight movements can be very painful. I only seem to struggle with it on my left side. The only thing that helps is time to let the inflammation subside a bit. I really, really hope this goes away as it will make being able to work out very difficult and I really want to start moving my body again.
I have become so hypersensitive to everything in the world. Foods, smells, products, you name it. My immune system is very hyperactive and reacts to everything these days.
I have a hard time being around cleaning products and scents. Every time I ride in an Uber or Cab that has air fresheners I get a horrible headache, feel nauseous and spacey, even with the window down. When I stay in hotels I have to bring my own pillowcase or I wake up puffy and swollen from whatever chemical fabric softener they used.
Food sensitivities are another huge piece I still deal with on a daily basis. Thanks to Lyme I have become allergic and sensitive to over 60 foods. It makes eating out very very difficult. Fortunately, I have most of my food allergies under control, but I have a very strict diet that I can never cheat on.
Lyme is also notorious for triggering on Autoimmune Conditions. For me it triggered on 3 Autoimmune Conditions that I know of:
Lyme tanked my Thyroid. Fortunately, there are lots of cases that are able to reversed once Lyme and your immune system is under control and the Stem Cells help a lot with this. After doing Thymus Therapy I am starting to finally be able to lower my dose and will see what the stem cell are able to do for me. I am hoping to ween completely off my Thyroid hormone but only time will tell.
This was a scary disease. I woke up one day to a bald spot on the top of my head! It was one of the first things that happened to me after getting Lyme, before I knew it was Lyme. Fortunately, I have not had issues with this again, especially since my diet is so clean and gluten free and will continue to be the rest of my life.
This one, unfortunately does not have much wiggle room for change. I will always have to maintain a strict gluten-free diet in order to stay healthy, and will always be Celiac. The best I can hope for with the Stem Cells is to be less sensitive to gluten when I eat out. Right now a microscopic crumb of gluten makes me sick for a week. In a perfect world, I would love to not be so sensitive and be able to eat out without cross contamination being such an issue for me. As my body has been healing my sensitivity has improved slightly. In the early days getting glutened would land me in bed for 7 days. Now I can somewhat function, but it still makes me feel like death for a week.
I have struggled with debilitating anxiety. Surprisingly after my cavitation surgery, I found substantial relief but I still have days where my anxiety gets the best of me.
I have the worst insomnia. I can never fall asleep on my own. I have tried mindfulness and relaxing and all sorts of things including hot baths before bed and I still have a hard time falling asleep.
I have had no libido for years now and also been dealing with severe pelvic pain. I am working with a doctor now to address these issues but this has been an extra stress in my relationship.
JOY OF LIFE
Now while this is not particularly a physical symptom, it is one that has greatly affected my quality of life for the past 4 years. Life has not been fun or enjoyable. The things that used to make me happy are too exhausting for me now, even socializing has taken a back burner which is hard for an extrovert. Everyday is simply just going through the motions, waiting for the day to end in hopes that the next day I feel slightly better. Most of the time its just one disappointing day after another of pain, fatigue and brain fog. I used to have such a zest for life, energy, motivation, I was happy. I have lost that with Lyme.
Everything I try to do in a day is a calculation of energy and how much something will wipe me out and had bad I will feel after. I have to weigh how fun something might be in the moment and how much I will have to pay for it later. Everything is exhausting and comes with a price. Not to mention foods, and how one bad bite of something, especially gluten cross contamination could send me to bed for days. There is a difference between being alive and living. The past 4 years have not been living. They have been survival mode to stay alive. I am ready to start living again and enjoying my days.
This list may still seem long and daunting, but it's nothing compared to the list of my original symptoms. After being sick for so long, I have learned to manage and work with my symptoms. This does not mean I want to live with them forever though, it just means I have learned to work with what I have, but still continue to search for ways to relieve them.
Check out all my posts about my stem cell journey:
My Symptoms Prior To Stem Cells
Stem Cell Prep Days 1-4 Beverly Hills
Stem Cell Prep Days 5-10 Frankfurt
Stem Cells At Infusio Frankfurt
100 Days Of Stem Cells
Stem Cell Update: Week 1
Stem Cell Update: Week 2
Stem Cell Update: Week 3
Stem Cell Update: Week 4
Stem Cell Update: Week 5
Stem Cell Update: Week 6
Stem Cell Update: Week 7
Stem Cell Update: Week 8
Stem Cell Update: Week 9
Stem Cell Update: Week 10
Stem Cell Update: Week 11
Stem Cell Update: Week 12
Stem Cell Update: Week 13
Stem Cell Update: 100 Days
Stem Cell Update: 6 Months
Stem Cell Update: 8 Months
Stem Cell Update: 1 Year
Stem Cell Update: 16 Months
ACT Therapy Update
Stem Cell Update: 2 Years
Stem Cell Recap