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.

Introducing-Dr. Psychiatrist

I Did the Thing I Never Wanted to DO

I did it. After years of needing something I finally did it. I went and saw an actual, MD Psychiatrist, mentioned in my last post. I pushed off ever seeing a psychiatrist because I never wanted any of my health issue to actually "be in my head". Lyme is so often referred to as being a fake illness and its "all in peoples heads" and I never wanted my head to need formal examination.

I found the compromise though. I went to a special clinic which does more than ask me about depression and has more to offer than self help questionnaires( i.e. are you sad? Do you feel the whole world is against you? Do you have a problem with drugs? Have you ever smoked marijuana? Do you want to kill yourself? OK ill stop there)

This new clinic is a fairly newer discovery for me. Especially considering its almost considered local even, only an hour away. This clinic takes a more comprehensive and wholesome look at the psychiatric situation, they take into consideration thyroid health, infections (lyme being an infection they're familiar with), hormones, traumas, brain injuries, allergies, diet, exercise, supplements.
I feel more comfortable being evaluated by someone who is familiar with more tools than just the hammer, if you will. They also use a specialized brain scan to see the brain itself, they did an active and a resting scan on my brain.
With these results they can see which parts of my brain are over active and which are under active.

It was all a very fascinating process, ive never done anything like this before. Truthfully I never thought Id need to either.
The patient coordinator (or whatever her title was) spent a significant amount of time with me getting more details on my symptoms, even the lyme symptoms. It was a very thorough yet comfortable evaluation. She asked me to explain some of my symptoms, like what is brain fog for me, in which I said - Its hard for me to retrieve thoughts, very hard to focus, difficult or impossible to remember things, and hard to string together thoughts.
Ive never really had to refine the definition of a symptom like that before, I appreciated how well they were paying attention to detail.

On day 1 they had me come to the clinic, and do the first brain scan. They gave me an IV of some sort of dye then they had me play some computer game with letters. Man was that hard, I am so glad I didnt get a grade for that because it would have been really sad LOL. The point of this activity was to activate my brain, get the circulation flowing.
Then I went in to be scanned.
After the scan I met with the patient coordinator for my story and health history.

Day 2 (final day). They had me relax in a room alone comfortably for 10-15 minutes to get my brain to wind down and go to its resting state.
Following this I was scanned.
A few hours after the scan I met with the Doc. She was very friendly and again, thorough.

The first thing the dr. said to me was So you are actually making A's in school? I said I do, its hard but I do.
She was surprised and commended me for being able to do that.
She proceeded to explain more about the scans and what the process was, and what a normal scan looks like.
Then came my scans. My results. The things that determined what was actually, legitimately going on in my head.
She told me I have a severe amount of brain inflammation throughout and this needs to be corrected ASAP. She said this is part of my cognitive impairment.
She showed me the relaxed scan first.
On this, I had an overactive basal ganglia (fight or flight part of the brain) and a very overactive thalamus.
The inflammation created a diamond pattern.
The basal ganglia is a survival part of the brain, its what kicks into gear when you are in trouble.
Now keep in mind this is my RESTING scan. When im supposed to be calming down or getting ready to sleep-my brain goes into survival mode-red alert-whats happening
Then the Thalamus is related to post traumatic stress, I do not remember all this was associated with.

On the active scan-
I had an underactive frontal cortex, which is the part of the brain that does the thinking. Its part of the Here and Now, taking in whats going on and responding, focusing, concentrating.
The left temporal lobe is also underactive, which is related to memory.
So the thinking and memory parts of my brain are missing a lot of function.

When im at rest, my brain goes on red alert. When im active, it shuts off. The basal ganglia is over active on both scans, but less over active on the active scan.
Which is why I enjoy keeping busy so much, it tones the stress in my head down. Working long hours on my car-its like im literally helping my brain hide from itself. OR other activities.

I was also told by something showing up on my scans and by symptoms that I may have a vision disorder called Irlens Syndrome (also called scotopic syndrome). Which is a processing problem in the brain for vision, not in the eye. It can in some cases be caused by infections causing damage.
This disorder is related to how the brain intakes colors, and with this problem it can cause issues with reading, skipping lines, and remembering what you read (very condensed version of symptoms). The treatment for this is to wear special colored glasses or contacts. I would need to see someone trained in this to be evaluated and figure out what color filter I would need. Im not sure when I will be pursuing this....

I was also told I most likely had PANDAS based on the severely overactive basal ganglia and by what we believe may have been a strep infection last March.
She told me the sudden onset of anxiety and OCD is a huge, huge, indicator for PANDAS. She did say she didnt really see it in adults but it was hard to argue with the symptoms and tests.
(ha, guess im special!!)

I had a strong strong feeling I was about to be diagnosed with PANDAS. Ive been pursuing that for a couple months now, trying to learn more on tests and treatments for it. I did not however know that PANDAS turned on the basal ganglia like that though (im sure ive read it, but I dont really understand the brain all that well. and I forget things that I dont understand). I thought PANDAS was really only visible through symptoms and strep tests.

I was told I may have had a little bit of ADD judging by my frontal lobe, it may not have been severe enough pre-lyme to have caused me any noticeable issue. The stress and damage from the lyme could have brought about its presentation.

Treatments-
#1 she emphasized that I do, hyperbaric oxygen. Ive never done this before. She said its vital for neurogenesis and bringing circulation back in my brain. She said I need to do 30 treatments.
Currently attempting to figure out the logistics of that.

#2, she gave me two supplements to take. One is a mix, high dose fish oil, strong memory booster and multi vitamin. The other supplement is for sleep, it has GABA, L Glutamine, Taurine, Tyrosine, and phosphitadyl serine in it.

Ive started the supplements. Hasn't been long so I do not really have much to report. The first supplement actually covered/replaced some thing I had previously been taking. Thankfully I actually came off some things by starting this. Thats a very rare occurrence in my world!!

All in all
Ive been told I have severe inflammation in my brain and whole body, I have brain damage, possibly Irlens syndrome, and I have PANDAS. Ill be darned. The dr actually managed to impress me with what they did and what they found. It isn't all that often a dr actually makes me say wow.

I was told 6 months on the supplements and 30 treatments on the hyperbaric.

The reason it took me so long to post on it (a week!), it took me a bit to digest all of this. I know I was expecting them to find something wrong ( I would have been mad if they didnt!) but just the fact that things were found and they do have significance.
On top of that, I still am learning about all of this. Im still reading through all my reports and understanding all the information ive been given.
And still checking out what options I have to help me out as far as symptoms. Im taking herbal anti depressants, GABA, L-Theanine, and some hormonal supports which have all helped with anxiety over the last several months. I think that last time I had a full breakdown was the end of October/beginning of November. The crying and severe anxiety has improved.
Im hoping this new protocol with get rid of the anxiety altogether and bring back my brain function.
I just feel so apathetic and empty, id really really like to see that disappear and get replaced with the old me
Maybe thats a big request, but surely with enough time and patience??'

One last thing. The best explanation as to how I feel was said by Shannon Goertzon on her blog four years ago in this post called Finding My Brave
Her blog posts were the main reason I searched out PANDAS, her symptoms match mine to a T, she seems much worse though. I highly suggest Shannons blog, she's been through the wringer more than once!! Very intelligent and endearing woman to read from!

Sleep, BWO, and Life

I mentioned a few weeks ago that I was going to post about brain wave optimization. Well Lyme brain struck!

But today I remembered I hadn't written the post, and I thought it was a good time. So here it goes.

Brain Wave Optimisation 

This therapy is a way for the brain to "see itself", a way to show the brain what's not ticking right. The goal is to bring balance back to brain function. It has been shown to stop anxiety or sleep disfunction when the brain waves are brought back into the correct balance. The therapy reads off brain waves and reflects them back using sound. When the brain "hears" itself it can correct what it didn't know was dysfunctional.

It sounds good right? It all made sense to me when my doctor explained it, when I researched it online, and when I spoke to the practitioner. I do believe this is a good therapy, if it's what your body needs.

Here's my experience.

I started the therapy, I met with the practitioner for 4 days, 2 hours in the morning and 2 in the afternoon. I layed back in a chair for most of it, with headphones in. During parts I would be attempting to sleep, if anything the goal was to relax and be still. That was easy, I am usually very relaxed. 

During this time the device was reading off my brain waves and playing them back to me using tones and music. It wasn't bad...I wouldn't go to a concert to hear that again, but it wasn't bad. During the second half of the therapy the goal was to be awake, somewhat stimulated. I would be sitting up in the chair, with a light on above me, and looking through or reading a book. Again, no big deal. 

During this whole therapy I became rather tired, sitting in one spot for so long took it out of me. But nonetheless, I thought it seemed promising. 

Towards the end of the week, nearing the end of the therapy, I felt more awake/alert during the day. No change in my sleep whatsoever. The practitioner seemed to be stuck on relaxing, the computer read outs didn't show I was unrelated. He just didn't seem to understand how some one could just not sleep...

Needles to say, I wasn't impressed with the end results. Sleep I would say changed none whatsoever, focus may be somewhat improved on some days. Which is good, but still not an impressive result. 

I also got this headband device, it is similar to the therapy with the practioner but on a smaller scale. I wear this headband that is connected to a tablet. The tablet will show the brainwave readouts, in a much more simplified manner than the practioners machine. The tablet plays the music, through ear buds, that supply the brain wave reflection. 

I'm supposed to do that everyday, starting at 2minutes building up to 20-40 minutes. I am going to continue with it, but I haven't noticed any change.

On a brighter note-

A few days ago I had one night of amazing sleep. That particular day I had to wake up early and hit the ground running. It turned out to be a good day(symptom wise), and I was able to do everything I needed no big deal. When the day came to an end, I was dead and actually went to sleep at a decent hour. I use the term decent hour loosely, it was about 1:00am but that's great for me. I woke up myself the next morning without needing an alarm, so my body was able to rest enough with time to spare. That never happens.

Sadly I haven't been able to repeat that, because my energy still had to rebuild after a long day like that. I'm almost back.

I know my last few posts have been about being depressed. This week I've had some relief! A couple days ago I decided to raid my oil stash and see if I could find a mood/energy booster. Instead of thinking beforehand and deciding what oil could work, I just looked at my bottles to decide what I would try. I just looked through my oils until something "stood out", I tied to follow my intuition. I picked frankincense and wild orange, 2 drops each in my diffuser. 

Frankincense is known for its mood boosting properties, I've used it successfully in the past. But wild orange was rather new. You see, I don't like wild orange. A few years ago I ate a bad orange, it probably had some chemicals on it or something and it made me vomit. That particular orange had a very strong orange smell to it, smelling the orange oil very much brought back the same nausea that bad orange did. 

Not this time, after mixing it with frankincense and diluting it in a diffusor, the orange gave me no problem. 

The frankincense/orange combo has been great, my mood and energy took a turn for the best. I have been able to sit down and focus better, I have had the motivation to get up and do things, very little depressive thoughts. 

Today I wasn't able to do it because I wasn't home enough, and I can feel the difference. I feel more bummed out and don't have the get up and go I did yesterday.

I have used oils with great results in the past, but I don't know if I have ever had such a dramatic result so fast. 

Now if I can find a mix of oils for sleeping...I could rule the world!!

I Hurt and I'm Swollen

Today was fantastic 

But all good things must come to an end. I helped throw a surprise party for a close friend of mine, I was part of the distraction. It went awesome! I had all the energy and focus I needed for the whole day. I was able to do math good enough to calculate how long we needed to be gone, time between stops on our car ride adventure, and miscellaneous things that came up. My brain worked for the day, can I tell you how great that is?
Words can't describe it. One thing is, if I didn't write this blog I wouldn't notice half the things I notice about myself. Today for example, I noticed I was holding up okay without any sort of hang ups. I didn't notice that my brain had cooperated that well until I started writing this post.

Repercussions have set in

I ate so much garbage, junk food. It's embarrassing to even admit all of that, but I did. And I am feeling it, my stomach is queasy, my back hurts, my energy is finished. Detoxing starts tomorrow haha

Lately I haven't been staying at my typical symptom levels...I have been more fatigues, my concentration has been off, I have been depressed on and off. Starting yesterday, my lymph nodes around my armpits have been swollen and painful.
While I was out cutting the grass yesterday, riding, the bouncing made my right lymph area feel like it was flopping around. It's hard to describe, but I could feel my skin stretch out and snap back. I am a thin person, I do not have anywhere on my body with enough meat or muscle to experience this, so this was new to me altogether.

My project of the week is to bring my swollen armpits back to normal. I've been using a roller bottle of oils, next I'm going to step up the detoxing and juicing. I'll report back!

All I can say at this point is, I am tired, my back hurts, my energy is finished, I ache and have pain all over, my sides(kidneys?) hurt, just several things going on...
It's time for bed!

Essential Oils

Hello you all!

I am glad to say I am doing well, I hope the same for you.

Essential oils have been on my mind a lot lately. Like homeopathy they work significantly through energy. On top of the energy and high vibration that is contained in a bottle of true essential oil, they have nutrients and scents that are beneficial for our body.

All matter has a vibration. Humans operate optimally around 62-68 MHz, in this range cancers and mutations are rare. The lower the vibration of the human body the more likely a disease will set in, at 42 MHz cancers typically appear and at the beginning of death the vibration can be 20 MHz.

Essential oils have a rather high vibration, especially when compared to foods. Fresh produce has a vibration of about 15 MHz while processed food is typically close to 0 MHz. Rose essential oil however is commonly measured at 320 mhz, lavender measures around 118 MHz, and peppermint around 78 MHz. Applying oils to certain parts of the body can impact or even significantly impact the vibration of the body.

Rose oil, which has the highest vibration of all essential oils, is one of the best remedies for depression and sorrow. The components in the oil are uplifting and strong, causing the body to react in a positive way to the oils presence. I see using oils as like a chiropractic adjustment for the immune system and mind. The vibrations, scent, and components of the oil cause a shift to the body when it camnot do so itself.

Many oils that have a strong impact on the mind have a vibration above 90 MHz. The first one that would come to mind for most people is lavender, a calming oil used for sleep disorders, anxiety, and stress. The vibration of lavender oil is in the 118 MHz range.
Frankincense is amazing for boosting brain power and focus. Recently it has even been shown to impact Alzheimer's progression in a positive direction. Frankincense vibrates in the upper 140's MHz range.

There is so much to learn about oils, they have been my recent obsession. I have considered joining one of the essential oil companies and start seeking oils. I use them often, and there's even more I would like to start using.
In the past I have mostly used oils for colds, infections, and pain-with impressive success. But there's even more I could be doing with oils, and sharing about on my blog!
It won't be much longer before I am done with long term supplements. Oils to me seem like one of the best methods to keep my body running on high, without falling back down. One thing I appreciate with oils is how they have more long term benefits IMO than standard supplements when it comes to fighting common infections. Using oils can raise the vibration of the cells, decreasing likely hood of getting sick in the first place, along with decreasing overall symptoms of the infection present. I use peppermint, for example, whenever I have a cold or sinus infection. Peppermint is antibacterial, a decongestant, and stimulates the nervous system. All of these shrink the severety level of an infection.

This is just some stuff that has been on my mind lately....if anyone has a favorite oil or brand please post in the comments! I would love to hear it.