Friday, December 14, 2018

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!

2 comments:

  1. This may sound strange but I am soooo happy for you! Real diagnosis means real possibility for improvement and you really deserve that. I am so excited to hear how this goes for you. What an awesome place!

    ReplyDelete
  2. I am too..I think it will help me in the long run. I just have to make it through another leg of the journey.

    ReplyDelete