First Decade with Lyme

 Ten Years Today!

On this day, ten years ago was when my life changed and I learned what it meant to be seriously ill. I broke my arm, had lyme in my body (unknowingly) and my health spiraled from there on out.

UNTIL I went to the lyme clinic in Kansas. Today, I feel like I am just as happy and just as able bodied as before I was sick. I feel great, I do all kinds of activities these days. Im still pushing at the gym, even though progress is slow. I go to visit my soon-to-be graduate school this weekend to see where Ill be living for the next four years of my life starting in April. 

I have a lot to look forward too outside of my health these days. Not every lyme patient is given this fortunate of an opportunity to move on with their life. I still take supplements, I take some things for autoimmune and for methylation and sleep. Which may seem like a lot, but considering these items work well enough that one skipped day makes me feel different, I feel like they count for a lot. 

I had a set of labs done in mid December 2020, my ANA was checked (autoimmune factors) plus standard CBC and lipids. I still have no cholesterol, that one stumps my lyme doctor to no end. He's given me stuff for my stomach/gallbladder/liver and changed things over and over and my body refuses to make cholesterol. My ANA is going down, its at the lowest it can be without being negative-which is fantastic. ANA may never test negative again, but as long as I feel well and the markers are rock bottom I do not really have anything to care about. I take two Apex Energetics products, Trizomal Glutathione and Nitric Balance and personally I think those two items are what have pushed my autoimmune down to a safe level. I still have kept on a regular dose on these two items, I have yet to drop down to a maintenance dose.

I run pretty hard, between my mildly questionable sleep schedule, work stress (recently quit my job of 5.5 years-but thats a story for another day), projects, the gym, planning for grad school and having a social life-I don't keep much down time. I enjoy staying busy because I was not able to for so long in my life. BUT with this, comes a price, I have  to take care of my body. I have to take my vitamins, I have to put myself in bed by a decent time in the evening, and I have to limit junk food. I also have to manage stress (people without chronic illness could be doing better in this category too!). If I stay consistent with these items I feel great and life is good. 

Yes I still have occasional days where I am not motivated and I do not want to do anything, but I attribute it to running hard more so than lyme. I do not have aches and pains associated with lyme, dizziness has been gone forever. 

Ten years ago, if someone said I was one day going to be going to chiropractic school to become a doctor because I had struggled with pain and disease for so long I wouldn't have believed it. I wanted to do some sort of sports, I wanted to get a degree in marine biology after high school. Instead I am going an entirely different direction in my life and I love it. 

I look back and this time has gone by so quickly, but I have not forgotten how terrible some of it was. I remember a few years ago how painful my anxiety and OCD was, that time period feels like it lasted forever. I was seriously afraid that would never end, that was a nightmare and nothing more. The early years with lyme, I spent trying to convince my parents and doctors that I had lyme and what having lyme meant. That was a long process in itself, its a complicated disease to explain to someone whose never had this sort of health issue. I am convinced, through my uncountable conversations with others about health, that lyme and co-infections are a category all in their own. Its not like cancer, it can be similar to autoimmune disease but at the same time it can be the cause of autoimmune, its different from thyroid disorders, its not even close to diabetes-just for some examples. 

I have so so much to be grateful for, my teachers, especially my psych teachers in college. They taught me so much on what it means to be able to manage stress and why its important. My whole journey has taught me about being compassionate and caring for others. 

Im glad im going into the next decade feeling like I have a sturdy ground to stand on, and I have God to thank for that more than anything else. 

Week with the Doctor

Just Completed my Second Week at the Clinic for the Year

I spent the week with the doctor, this is the second trip this year.

It went extremely well, my test results as a whole have stayed consistent and I haven't gotten any worse from the last time I visited the clinic. I have been feeling great, going to the gym 4-5x a week, i've been sleeping well, had decent energy, and for the most part feeling normal. He is happy with the progress I have made since my visit in March, once again he said there is no lyme or pathogen's in my system causing me issues, its just a matter of cleaning up the damage that the lyme has left.

Since this time last year, I have gained around 20lbs, which is a big deal for me. I still need to gain more but it is not something I need to worry too much on. This week the doctor did spend some time focusing on my gut so that in theory I can start eating more sooner rather than later. He is not too discouraged by how much I eat, but he does want my appetite to be more consistent (because some days I couldn't care less if I ate or not).

He did work on my gut, brain, lungs, liver and heart this week and that was it. I am taking probably half of the amount of supplements as to what I normally would be taking-which is fantastic. No parasites either, which was a problem forever. Parasite treatment was the worst too!

I am pretty excited, I won't need to see him again until March next year. If it wasn't for my school schedule limiting when I can and cannot go I probably wouldn't go back to the clinic for a year. My March visit next year will probably be the only visit to the clinic next year, which would be the best yet. This year and last, I visited the clinic two per year. Back when I first started going I went 3x the first year, I think 4x the second because I ended up getting very sick (or it may have been the third year...I would have to look back at my notes). In total I have been going for 5 and a half years, which is daunting to think about. Niether my parents, my doctor, or myself thought it would take this long to get my body back to normal. I still struggle with issues here and there, sometimes I do still feel depressed or defeated, I still just get totally worn out sometimes, and I do have to push myself hard to keep my motivation. But. I am doing well. When I have a bad day, I know it will be short lived. Instead of a bad month its just a bad day. I like being able to live my life without really having to think "oh yea, I have lyme disease"

I have made great progress over the last year, I am feeling much better and feeling more normal. I have to say I have one of the best doctors in the world!

I probably will post less on my blog only because I do not have as much to share, but I am not leaving by any stretch. Years ago when I spent so much time reading lyme blogs I found that some would just end, without any idea as to what happened to the writer. Some others would end when the writer started doing better. I want to continue to catalog and share what happens with my life, because Lyme has been a part of my life for so long it has shaped my future.

Because of Lyme I chose to pursue a career in alternative medicine, I will be applying to grad schools in the next month or two. I plan on becoming a chiropractor, I am also considering pursuing a Masters in psychology so that I could be a counselor in addition. In December of this year, I will finally finish my undergraduate degree in psychology. I am super excited for this!

Years ago, in one of my more emotional posts on what lyme can do to ones mental state, I talked about how I felt like it hurt me more to dream about the future because I was not healthy or capable enough to do the things I needed and wanted. I feel like now, I can dream all I want and my body wont be what holds me back. I know psychologically I will struggle a little bit more than others when it comes to some things, but because I know that and I have had some great resources, I will now be able to cope more so than in the past. Brain fog and forgetfulness still happens, it may even be a "normal" amount-truthfully I don't know. My doctor told me that most likely what will happen is that I will start remembering more from here on out, but the things I have forgotten over the years may or may not come back. SO five years from now I will remember this point forward, but some things from five years ago now I may never get back. Which is ok, because I still am making progress.

I have some other "health" goals I need to push for myself that all of us, chronic or not, need to be working on. I have mentioned before about how much my psychology teachers have pushed us to manage our stress, because that will be the prevention we need to keep away from all sorts of ailments. I need to work some more on my spirituality, I have gotten so bad at reading books of any kind because it is hard for me to sit down and read-especially if it is something I want to read to remember. I need to get back into doing some reading and studying, outside of school.

I pray often but I would not say I have been pushing my relationship with God very much as I should be.

I want to continue being able to share with others with lyme or chronic illness that there is hope, ignore what the doctors or naysayers say and push your own pathway towards healing. I have no idea if I will ever have a lyme flair again, I may not or I may have a lot more ahead. Who knows. But what will count is how I handle it mentally, physically and emotionally.

Finishing the Week

Im sorry I never followed up on the following visits like I usually do day to day. I just didn't feel like putting energy into writing, but I did feel very well the whole week. Pretty much for the first time ever.

Day 2!

 I did not sleep so great the night before, i was awake most of the night because I just couldn't sleep. OCD and negative thoughts were racing through my head, sleep just doesn't happen on those nights. Plenty of crying yes, sleeping? nah.

So I talked to the doctor about those things and sleep and brain issues.
First off he put me right back on several things he had taken me off. So my break off of a ton of supplements was short lived.
He replaced 3 things I was taking with 1-2 things instead, this new stuff should work better than what I had been taken before. They also should not be permanent, they should be working to fix the problem whereas the few items before were as needed (which became as needed everyday).
We also worked again on neurotransmitters to replace something else I had been taking. Neurotransmitters are used for brain power, sleeping, waking up, thought control, concentrating, basically anything and everything your brain does. My neurotransmitters aren't in the greatest shape which could also lead to me not feeling hungry like a normal person would and it would also leave me awake at night.
We primarily worked on dopamine, serotonin and GABA plus one of the adrenal hormones called norepinephrine.
Dopamine is your brain power, no dopamine = no energy to think or become motivated. GABA is what turns the brain off at night to sleep ( chances are if you have racing thoughts at night or even all the time, not enough GABA in your system). Then Serotonin which is for mood control and its the natural anti depressant your body makes, at night your body turns serotonin into melatonin to sleep.
Since I don't sleep, I have racing thoughts, brain fog, and sometimes absolutely zero motivation I thought these things matched my symptoms rather well.

Unfortunately this wasn't as easy to correct as the eosoniphils on the first day. He added in 6 new things for me to take, two of which replaced 3 things I had been taking. So a little bit of consolidation did happen, just not as much as I would have appreciated....

Day 3!
I slept extremely hard last night and have felt pretty well all day today, which is unusual while im here. This evening I even spent some time out by the pool which I have only ever done once before, usually in the evening I'm too tired to get off the couch. 

In my doctors appointment today we actually ran short, we ran out of problems to work on so I was finished with the doctor early. Not the worst problem to have!
My doctor spent most of our appointment doing chiropractic work, adjusting this and torquing that. I am much less tense after all his beating around.
As far as treatment goes, only 1 new thing today. Through his testing he found an issue with my gut+brain connection.
He found an issue in my amygdala, which is the part of the brain that stores trauma. In my gut he found an infection called toxoplasmosis, which is typically carried by ticks and cats. It can be opportunistic.
In this he determined what was happening between my stomach and brain was that the infection in my gut was setting off a traumatic reaction in my brain, working as a signal to tell my stomach to not accept food. He made a homeopathic remedy to get rid of the infection and to balance out the disconnect, so in theory this could also be a big game changer as far as how i get to eat.
When all these new things start working and getting into my system I may finally be able to eat again. 

Day 4-5

Yesterday and today were both easy doctor visits. Both were a bit on the shorter side.
Yesterday he used something called neurophotonic therapy. He's used this therapy for me before on my first and second visit to the clinic two years ago.
Basically this therapy is a test and a treatment mixed into one. The test is to check how money body processes different wavelengths of light, he used red, blue, green, yellow, orange, and pink. While my body body is processing the light, the doctor runs his tests to see which nerve signals misfire. He finds the misfires and treats them with homeopathics, single doses in office.
This is one of those things that sounds much more complicated than it is, but it does have a profound effect on the nervous system and how it functions. I do not know enough about it to give a detailed explanation, I may have posted about it on visit number 1-2 a few years ago.
So yesterday I did not receive any more remedies to take home.

On the last day we did neurophotonic therapy again along with some more work on my gut.
He found that my spleen was not functioning up to par, which could also affect digestion. He found a couple other minor imbalances with my brain and stomach on top of the spleen, nothing terribly profound though. He gave me two new supplements to take home this time but these are chinese medicine herbals. So for anyone who knows about chinese medicine you'll know these are very strong and very different from standard homeopathic medicine and regular over the counter supplements. Any one whose taken them before can also tell you, they don't taste so great either. Kinda like mixing dirt and alcohol, add in some bitterness, pretty close to what this stuff taste like.
The neurophotonic therapy today was mildly different from yesterday, today he focused on neurology for sleep. So today when he did this therapy he focused on balancing out brain waves so that I will sleep deeper. He had me take a bunch of single doses of homeopathic to correct these imbalances, nothing to take home though.

I have a long list of supplements to take for the next two months but once again, even though its a lot everything is at a lower dose than in the past. Most of my supplements are just once a day instead of twice a day and at they, most are either 1 dropper or 1 tablet instead of multiple. Even though I still have a lot to take it definitely is not in the same way it has been in the past.
Our goal is for me not to need to go back to the clinic until March next year. My doctor thinks I can make it that long with how I have been progressing. 

Overall I am feeling much much better than I have been after my last few visits. I actually had energy to use once I made it home this evening, I normally have none left after a long week at the clinic.

I had a lot more energy to work with this week and I have felt more stable than I normally do after treatment. I still had to rest a lot but not as much as in the past.
I am pleased with the results from this visit. Very pleased!

My Own Little Corner

This weekend has been rocky and it isn't even over yet. My brain has been scrambled eggs. I spent last night feeling OCD and depressed. I cried in the shower because I didn't know what else to do. I still don't know what to do. My brain wants to keep upsetting thoughts in circulation and important thoughts forgotten. The sadness and loneliness was unbearable.
I started the intake process with the school councilor last week. I go back this week for something, I think i get placed with a councilor. Im not entirely sure how it works, I just know I have to go back.
Getting the process started was so uncomfortable to me, I had to explain to the intake councilor about lyme disease and why it causes me such hassles. I used to not mind sharing my story but with how I feel these days I feel like so...sick of sharing. It feels like my business, not someone elses. But I did it, nothing bad came of it. He didn't try to tell me anything about lyme, he did of course bring up the CD C and wondered why they didn't do anything about it. I didn't entirely appreciate how he asked me about it, im the patient not the doctor. Why on earth would I honestly care about the CDC, I have a long list of complaints about the CDC but lets be real, the CDC recognizes the Flu, HIV, Tuberculosis, and a ton of other diseases but can a person with HIV be cured? No. Would I ask a person with HIV about the CDC not being able to treat them? No, it probably get looked at like I had lost my marbles.
But its fine. Ive made it this far. I keep telling myself that its time to seek professional help, I have lost so much enjoyment in life that I know I would have if I could just think straight. At this point Ill even try anti depressants and/or anxiety medication, not long ago I would have said I would never take those meds unless it was an emergency. But its time. I think anxiety is part of the reason my eating has been so bizarre and why I never feel like eating. I think depression and OCD are why I can't enjoy anything and why I never feel like anything is good enough. Its gotta change.
Lately I have not been feeling that bad at all-if I discount my emotional turmoil. I have had some back pain, other than that I haven't been hurting much. Fatigue has been significant but because of the OCD and things I haven't been able to sleep...the last two nights, with the help of meds, I have been able to sleep deeper. Today I have for sure had more energy.
Heart and blood pressure symptoms have been an issue, they are probably the only ones I have that aren't related to anxiety or depression related. They could be indirectly though. I just know that if my mood was stabilized and normalized I would probably be feeling great right now, or even more often.
It is hard for me to go the councilor route though, I don't bond with just anyone, I don't feel comfortable speaking to just anyone, and my brain fog will keep me from being able to speak my thoughts clearly. I am going to try to push through it. Currently the only people who know I am trying to pursue this is you guys that have found this blog online, two friends, and my mom. Thats it, I don't think ill change that anytime soon either.

Last night something really triggered me. I was speaking to my best friend and he told me he probably won't be able to go with me to Kansas again this year. I am trying to go back to the clinic in either August or December, so theres time to plan out ahead. Or so i thought. I don't want to keep going through treatment alone like I am. I want and need a friend with me. It takes a lot out of me by sitting in a hotel room listening to the world around me go round while I watch some tv show that I don't enjoy. It makes me feel so small and worthless knowing my friends and family are at home living their life, making money at work, hanging out with other people, and all I can do is keep the hotel bed planted on the floor.
I hate it. It made me feel a billion times better having my best friend with me last visit. I wasn't uncomfortable and I didn't feel so alienated from the living world. I had a friend with me, someone there just for me to see that I was okay. I was much more stable and well feeling having him with me....
I don't want to go back to my doctor at all if its just going to be me staring down the four walls between clinic visits.
I don't even have the energy to go off and go walking or anything after seeing the doctor usually, otherwise I would try to find things to do but its just not that easy....

Its hard for me to find encouragement. Its hard for me to get out of my own head. Its hard for me to trust anyone. Its hard to feel the love from those around me. Its hard to enjoy anything. Day to day activities have just become a distraction between sleeping.

I sure hope that hamster is enjoying its vacation from the wheel....