I Miss My Old Lyme-Wait What?

Tonight the stress of this whole week has finally caught up to me. I miss the beginning of the week when I had some energy and brain power. I miss sleeping beside my best friend and having a companion. I miss having new test results to cheer me up about my future. I miss the peace I had.
I am back home from Kansas, we flew back home this afternoon. Flying always makes me tired no matter how long or short it is. I kept myself well entertained on the plane with Amazon Instant video, I think I have watched every episode of Top Gear UK ever at this point.
I held up fairly well but now that I am home and done for the day I am fried and emotional. I don't want to be alone. I am tired. I need to eat but I can't which means I can't take one of my new supplements, I don't want to skip doses so soon on a new protocol.  just can't do it tonight though. I am too tired to do anymore.

Whats ridiculous is that I am always too tired to do what I want to do but I am never so tired that my brain cannot run wild. I have never been so tired that my brain would stop being paranoid, stressed, or alone feeling. I spent days this week with my best friend, the only time he was more than 5 feet away from me this week was when I was in massage. He was beside me through everything else, my dr knows him now and knows how important having him there with me was. In my life right now, going to the clinic and meeting my doctor is about as personal as you could get with me. 
Having my best friend there kept me sane. I never went stir crazy in the hotel room or felt alone or trapped. We kept ourselves fairly entertained with netflix and movies. 
We even went to the junkyard on tuesday and found parts for my Volvo. I wouldn't have done that without him being there. PS if you own an old Volvo parts for them are few and far between. This was the only junkyard out of the 9 i called that had one car with two parts on it I could use.
In the evenings we would go to Happy hour in the hotel lobby to get out of the room and be around other people. He would get a soda and I would ask for a soda still in the can, then I would keep it so my friend could drink it later. 
We kept from getting bored while just sitting around for most of the day. We even explored Target for a little bit once. 
This made all of the difference in the world for me, I really needed a friend with me. The last few visits to the clinic I have gone stir crazy from sitting around the hotel room but having no energy to do anything. I was relaxed this week. All was well in my world.
When my friend left yesterday morning and I was back to the usual routine, the stir crazy came back. During the evening I was alone in the room for about an hour. I packed, cleaned the kitchen, and paced the room because I just could not just sit down with my thoughts for another second. I finally gave up and found something to watch that worked good enough as a distraction. But it was hard. 
This morning I had to keep moving because of the tight schedule of checking out of the hotel, going to the clinic, then catching an airplane, so I have not had time to think until now.

Until last year when I broke I never needed constant support. I never needed my hand held. I was strong. I was lyme strong. I had lived through burning and searing pain, nightmares, days without sleep, days without friends, nausea, I fought it and I would win. 
Now I never want to be alone, I can feel alone in a crowded room, I want someone to hold my hand and walk with me through this. I do not connect with just anyone, theres very very few people I feel all that close to or I trust. 
I miss how I used to be sick. I would be tired but calm, so no matter how horrible I felt I could just stay in bed watching tv. I could go get an IV and life would somewhat improve for at least a short time( i just had to make it through the die off period). In the hotel at the clinic I used to be okay with just loafing with the tv remote because I did not feel like doing anything. 
I would find something to do, text, read, blog. It was all good. I didn't necessarily enjoy how I felt or anything like that but I could make life happen with how I was then.
I can't always make life happen that easily when my brain goes out. The last month I have lived through pretty well. I mean school is going well, I bought a project car to fix up myself and sell(previously mentioned Volvo), sleeping hasn't been the hardest thing ever, paranoia has been on the low. 
I have had a few not so good moments where I over did it. One afternoon when I was home alone, I walked down to the kitchen to get a snack. Somewhere between getting food from the cabinet and walking to the counter I lost it. I cried and tears were rolling down my face, I was upset and angry, I felt alone and wanted help, it all came out of nowhere. I just fell apart in the middle of the afternoon on a regular day in the kitchen. That was a hard day. Since then I haven't had any major breakdowns until this evening.

Reading and blogging is not easy anymore. I have more thoughts to share than ever but I can't get them out because I am stuck in my own head. I have more energy to do physical things but I am still scatterbrained sometimes. I still slur things when I speak, sometimes I jumble a whole sentence into one messed up word. I don't like not being myself completely. Life has gotten a lot better but not yet normal...or at least a predictable equilibrium.

I still need someone to help me through this. Unfortunately everyone I know has their own life to live which often does not include me, so I find myself alone with my thoughts. Or alone with my Volvo, I had no idea a 1999 station wagon was capable of being such a good companion. 
I keep praying that I am nearing the end of the lonely journey. It has gone on so long and just seems never ending. 

Day 5 of Treatment 2018

Hi all, I hope you are all having a good symptom free week!

Today was my last day in Wichita at the clinic, I am all the way back home in my own bed now-very tired.
The doctors visit went well, not terribly exciting. The doc worked on my spine, neck, and muscles doing regular chiropractic work. I am prone to all sorts of spinal stuff because of my scoliosis, my KS  doc does a much better job at adjusting my back and making it last than any other chiropractor I've been to.
I was not given anymore supplements to take home on todays visit, praise the Lord. The doc did some testing on my thyroid and hormones but it all tested well. He gave me a few one time dose homeopathics to take in his office, but thats it.
In other words, today I checked out well and there was not a whole lot for me to have done. Loose ends are being tied up.

This was a great week. My doctor has me on a bunch of new supplements I have never tried before so I am very excited to see what kind of progress is made in the next few months.
My gut has been totally screwed up since March of last year. Whatever happened last March when I got sick during treatment has really stuck around in my body and hasn't let go. Anyone who has been following me this last year knows that the last several months have been the worst, maybe ever for me.
When everything went south last year my gut became problematic and my digestion was lacking. I was ready to just quit eating altogether at one point. It just hurt. I lost my mind for a while, it felt like decades. In reality I don't know when it started or when it ended, I just know that most of the time I am better now and I never get to the extremes I used to hit. Pain came back along with dizziness and extreme fatigue.
The last three visits to the clinic have mainly been to get my body floating in the right direction again. Each time brought more progress. This last week I think may have finally tied up the loose ends. My doctor found a lot with my gut and brain individually and my gut and brain together. Never had these kind of findings show up on the test before, so I think we may have finally dug through enough layers to reach some of the roots of why an atom bomb went off inside me and broke me in to a billion tiny pieces.
I am on new supplements that I have never tried, mostly for either detox in general or killing bad gut flora. My doctor said it could take a while for my gut to shift, as long as I don't get extremely worse I don't care how long it takes as long as I am moving in the right direction.

Fourth Day 2018

Today was my second to last day of treatment for this round. The doctor worked on me a fair bit this afternoon. He focused on brain things mainly, he also found a gut bacteria issue causing my brain to be affected. He said my gut issues could be causing a lot of the psychological issues I have, so I have strong hope that the new remedies to fix this will work quickly.
He also found more of those good old heavy metals that my body seems to accumulate along with halogens. So we will be continuing metal detox once again. Each visit this seems to become less of a priority, I know it’s gettkng better. I just need to keep patient.
He took me of NAC and another metal detox supplement, so 2 things have been taken off my supplement list this go round. I was kinda hoping for some more supplements to be eliminated, maybe next time.


So far I think this has been a productive trip. I have several new gut and brain supplements which I have never tried before. My appetite is usually very lacking and eating a significant amount leads to my stomach aching. These new enzymes and herbs should begin to turn that around.

2 and 3

Day 2 went well. My tests showed good results and I probably won’t need my CRT repeated for another year(instead of 1 every visit). My doctor is pleased with my progress, he wants to focus on my sleep and my gut. So yesteday we worked more on my brain with some neurotransmitters. He is giving me two supplements to help balance out some of my brain chemicals. He also gave me something for autoimmune things I have. I have noticed my last few visits have been targeted around autoimmune more than ever before, I hope this is the final straw as to why I’m still not feeling well. 

Today was similar, we worked on some autoimmune issues, some chiropractic and muscular work, and another supplement called Limbrokinase for a few different purposes. 

The good news is my doctor is finding less and less wrong with me, today we finished early. This gives me some hope that things are progressing quickly. 

Hansa 2018

Good things happened on my first day!

My doctor ran through my blood work, fairly impressed. My cholesterol is still not doing what it is supposed to do but other than that he said I get a good report. 

On his other testing he checked out my stomach, he found an overgrowth of E.Coli and salmonella, our guess is this could be the reason I never feel like eating. He gave me a remedy to kill the bad bacteria, digestive enzymes, and an oral glutathione to take. I am hoping that this week will get my stomach back to working again so I can eat. I feel like I am always starving even when I’m “full”. I know I don’t eat enough, I counted my calories the other day for 3 days. I managed around 1,000 calories a day. Which is less than half what I need to be doing. 

If we can get my stomach working this week and help my sleep out, I won’t be in to bad of shape when I leave here. 

Honestly since my IV last month I have been holding fairly well. Even my brain power has been good enough, still needs improvement by a long shot but I am functioning well with what I have. I have had joint pain and other pain things coming and going plus exercise still is a no good. But hey as long as I have a little energy, a little brain power, and a lot of support from my best friend I can make do just fine! 

School has been going fairly well also, I’ve struggled a bit but if I’m fully honest here there’s plenty of non sick people who work harder in class than myself but have lower grades. I may not be doing as perfectionistic as I would prefer in my school work but I can’t say I am grasping for straws(but the semester isn’t over yet and I still have papers to write!). 

I have not yet seen the doctor today but it won’t be much longer before more progress is made today.

The Story for Grandma

Well you guys I have a whole lot to update, there has been a whole lot of ups and downs this last month or two but right now we are doing well.
In the middle of February I went to my old DO and she gave me some infusions of vitamin C, glutathione, Mag, and B complex. This dramatically helped me improve very quickly. Three days after the IV my heart racing and palpitations had calmed down and a few days later my heart was back to normal.
My mood and brain issues stabilized, my sudden fear and brain rachetness calmed down. I can now handle stress again with a much more reasonable attitude. Energy returned also, not perfect but plenty good enough for me to function in daily life.

On to the current news...
I’m back in Kansas, I saw the doc this morning.
Getting here to Kansas was probably the worst trip ever, last March when I was here we had to drive through a tornado and hail storm....this time was much more stressful.
The good news, my best friend came with me this trip so I have my mom and best friend here.
The hard part-the Atlanta airport.
All three of us fly standbye, so we take what seats are given to us. This also includes TSA precheck, sometimes we get it and sometimes we don’t. Well mom and I got precheck so we went through the short(ish) security line. My best friend however did not. His line took over 45 minutes to get through, when he reached the end of the line to actually go through security the agent looked at him and said no, you stand there until I tell you to go through. He had asked if it was possible for him to get through quickly because his plane was about to leave, oftentimes they’ll push the ones in a hurry through. Not this one, she held him back until she decided he could go. When he was finally released he ran through the airport to the gate...and missed it by 30 seconds. The captain of the plane decides to shut the door ten minutes early....
Another pilot walked up to the gate just behind my friend, he had called the gate ahead of time to make sure they would hold the door for him so he could take the jump seat. Nope, they closed it on him too. Then another 4 paying passengers walk up and realize what has happened. Needless to say, the gate agent went back down the jetway and hid from all the angry people at her desk.
We even said something to the flight attendant to hold the door because my friend was at the gate and more had walked up. My dad is an airline captain, I know what they are allowed to do. Nope. Mr captain man decided he had better things to do.

While all this was going on at the aiport, Mom and I had made it to Kansas. We go to our hotel expecting them to have our room which we book every single time. Nope...they had no room. We wait a little bit and the manager sends us to a new room, I walk in and the counter is covered in trash and none of the beds have sheets. I head on back to the lobby and we tell the manager the issue and he calls me a liar! I was like would you like to go see it yourself??
After that he finds us yet another room, this time he inspects it himself first before sending us to it. This is when things started turning around.
About the time he found us the good room my friend calls me from the airport, he’s boarding the plane and will be in Kansas before long. Huge huge relief that was, not to mention I was super excited!
Needless to say, that was an interesting day. While I was sitting around during all of this my grandmother texts me to make sure we made it to Kansas and the hotel, all I say to her is...man do I have a story for you!

Heart Troubles

A lot has been going on in my life over the last few weeks that I need to share. One big thing that has been front and center is my heart. Two weeks ago, Saturday night around 1:30-2:00 am, my heart decided that it would be a great time to just go. So it did. It beat for hours...all night...then all the next day..and the next day, and the next day. I thought it was going to jump right out of my chest. This just wore me out, saturday night to tuesday afternoon, non stop. 

This heart marathon beat me down, it frustrated me, it made me so tired, and along with it came an adrenaline rush. You know what you can't do during an adrenaline rush? Sleep. You know what I didn't do much of during this time? Sleep. On Monday I picked up a bottle of Calm magnesium to take because I know magnesium has helped me with some of these issues in the past. Sometime tuesday afternoon this heart ordeal began calming down, then wednesday was a good day(maybe even mildly fantastic). Thursday, also a good day. Friday, surprise again-good day. Then comes Saturday night, boom, back to a heart marathon. No idea what caused it either night. I never stopped with the magnesium.

The next morning, sunday in church, was terrible. I was just out of it...the morning started out okay but the longer that I was awake the less I felt like being upright. 

So since these events I have been loading on magnesium with some success. I also started doing a drop of frankincense and lemon oil in my water bottle once a day and I drink this throughout the day. Between the magnesium and the oils, I have found a little bit of relief and stability. The oils seem to have calmed down my brain and made me more alert, which in turn may also be calming the adrenaline surges. The mag has no doubt made me more relaxed, I must say this has been a nice relief.

I do not know what suddenly set this off. It just came up and never totally disappeared.

I spoke to one of the doctors I work for. He's a big fitbit fan like I am, so he asked me for the readouts of my heart rate according to my fitbit. He looked at it and say my average/resting beats per minute is much higher than it should be especially for my age. He looked at me and said something along the lines of-I am twice your age, overweight, too busy to take care of myself, and I don't eat the best diet and my heart rate is way better than yours.

When he put it in that perspective I was like oh...maybe this has been an issue longer than I thought. He told me his resting heart rate stays in the upper 50's to mid 60's. Mine is at upper 60's to low 70's, with periodic spikes around 115 bpm or more.

Even before the sudden heart racing my resting bpm was mid 60's, with a few mild spikes up into the 100's.

I do not know what I need to do now...last time I had IV meds my heart symptoms improved significantly for a few weeks. That was about a month ago, I guess its about time to consider doing another round. My IV's consist of magnesium, B's, C, and Sodium Bicarbonate. 

I just honestly do not want to go back to the doctor to just sit in a chair, freezing, for however long it takes for the bags to drip into me. I just don't. I like how I feel the day after the infusions, usually I feel better across the board. I just do not want to keep doing that.

I had enjoyed my hiatus from the IV pole. 

I must add something else. Its not just my heart physically thats causing me issues, emotionally I have a lot running through me. A lot of memories from when I first got sick have been coming back as well as thinking about how my friend group has changed over the years. Looking back there are a lot of things I miss about my friends. When I first became sick I, like most lyme people, lost communication with some friends. I wasn't any longer in sight of my friends all the time, because I was spending more time at home in bed. I knew that people my age did not understand what being chronically ill meant. I tried to be understanding by reasoning with myself that they just did not understand what being sick meant and that they just had other things to do.

Well, now that I am older and going through round two of a long time down swing in health, I am discovering that the people I know have not changed, even the people I know now that I did not know then are they same. If I am not front and center to their attention I kinda get pushed to the wayside. Now that I and my friends are older, they just have different excuses for being busy or not responding to text messages.

Today I had an appointment with the massage therapist at work for her to work on my abdominal muscles. The muscles around my stomach are super tight causing me issues with eating.

In reality though, I just had that appointment to have someone to talk to who actually knows me. After the appointment she asked if the massage had helped my stomach, I said it doesn't feel much different and she agreed. I think it would be safe to say that my stomach is where I store my stress these days.

On another note, I told one of my school friends about lyme disease today. I am not close to anyone really at school. I have friends and we have small group that sticks together, but really only at school. I do not share much of my personal life with them, being sick is one of the most personal aspects of my life, so I do not tell just anyone and everyone. 

Before today only one other friend of mine at school knew I was sick.

The conversation went well. She was talking to me about this new healthy diet she was trying so I asked why she was doing it, her response was so that she could start trying to form better dietary habits. I told her I avoid sugar, wheat, and dairy. Naturally she asked why would I do that, so I explained my health situation. 

I was surprised at how understanding she was and that she actually asked me questions about my illness. Usually people kinda brush it off and try to move on, politely of course. Turns out her mom has MS, so she understands some of the basic chronic illness things and has heard of lyme disease before. She thought it was easily treatable, I explained to her how its only easy in the beginning. 

All in all, I liked talking to her about all of this briefly, it is not often I get to reach outside of the bubble of myself to talk about these health struggles. It makes the whole chronic illness deal rather lonely and sad.

Today has been a long day, its now after 2:00 am and I am still wide awake...after a day of school, work, homework, and a sleeping pill I would like to sleep. Unfortunately, it just is not happening tonight. I have no idea what I have done to my brain, but relaxing to sleep at night is becoming more of a rarity than normal.....