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Mystery Disorder/Disease
 
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Published: 10 y
 

Mystery Disorder/Disease


Hey what's up guys.

Unfortunately I'm dealing with some sort of mystery disease and after several years of trying to figure it out I've not made any real substantial progress.  My GP was of course unhelpful and couldn't understand anything besides what an anti depressant or adderall could treat so I started my own research.  I also saw a couple psychologists who said that I just needed to talk about my feelings and that it was all in my head.

This has been a slow progressive disease that started about 8 years ago and peaked about 4 years ago.  24 yo/male.

I've made SOME progress with a couple supplements but in reality I'm not doing very well.  I've created a packet that I intend to take to an endocrinologist as well as a neurologist to speed up their understanding of where I'm at, and I'm just going to share that with you now.

I still have no idea what this problem could possibly be but it's effectively destroyed my life.  Everything that made me who I am is basically gone.  I'm just struggling through day to day praying that the new supplement I purchased after weeks of research makes all this go away and that my next forum post or doctor visit will yield SOMETHING definitive.  I know I'm not that important in the big scheme of things but I need some serious help here and would be eternally grateful if someone could point me in the right direction.

Thank you so much for checking this out if you have/will and if anything clicks here, please share!  Also, I have links to discussions of my situation on several other forums but I can't post links yet, if you'd like to see them feel free to PM and I'll link you right away.

 

Confirmed Disturbances

Helpful Supplements

Theories

Epstein Barr Virus

Sporadic/Low Body Temps

Subclinically Low T

Elevated Cortisol Levels

Phosphatidylserine

Ashwagandha

Samento (Cat's Claw)

Hydrocortisone

Lion's Mane

PQQ/Ubiquinol (CoQ10)

Cushing's Syndrome/Disease

Epstein Barr Virus

Lyme Disease

Toxoplasmosis Gondii

Adrenal Fatigue

Wilson's Syndrome

Hashimoto's Encephalopathy

Depersonalization

Sleep Problems – Apnea?

Possible STI?

MTHFR Gene?

 

Symptoms

*Alogia, or poverty of speech, is the lessening of speech fluency and productivity, thought to reflect slowing or blocked thoughts, and often manifested as short, empty replies to questions.

**Affective flattening is the reduction in the range and intensity of emotional expression, including facial expression, voice tone, eye contact (person seems to stare, doesn't maintain eye contact in a normal process), and is not able to interpret body language nor use appropriate body language.

**Avolition is the reduction, difficulty, or inability to initiate and persist in goal-directed behavior; it is often mistaken for apparent disinterest. (examples of avolition include: no longer interested in going out and meeting with friends, no longer interested in activities that the person used to show enthusiasm for, no longer interested in much of anything, sitting in the house for many hours a day doing nothing.)

A short summary of a list of negative symptoms are:

  • lack of emotion - the inability to enjoy regular activities (visiting with friends, etc.) as much as before

  • Low energy - the person tends to sit around and sleep much more than normal

  • lack of interest in life, low motivation

  • Affective flattening - a blank, blunted facial expression or less lively facial movements, flat voice (lack of normal intonations and variance) or physical movements.

  • Alogia (difficulty or inability to speak)

  • Inappropriate social skills or lack of interest or ability to socialize with other people

  • Inability to make friends or keep friends, or not caring to have friends

  • Social isolation - person spends most of the day alone or only with close family
     

Cognitive Symptoms
Cognitive symptoms refer to the difficulties with concentration and memory. These can include:

  • disorganized thinking

  • slow thinking

  • difficulty understanding

  • poor concentration

  • poor memory

  • difficulty expressing thoughts

  • difficulty integrating thoughts, feelings and behavior

Confirmed Disturbances

Low Temperatures

**Possibly indicative of "Wilson's Syndrome" which equates to an "underfunctioning" thyroid even when the labs come back "normal". Indicates ineffective tissue utilization of T3; the problem occurs after it's out of the blood. Theory.

Body temperatures fluctuate from 96.0 F - 98.0 MAXIMUM but usually hovers around 97.0 +/- .5

Confirmed Epstein-Barr Virus 11/29/12

Subclinically Low T

Date Taken: 11/29/12

Free Testosterone @ 8.9 ------- UNITS: pg/mL ----- Reference Range: (9.3-26.5) Low
Total Testosterone @ 399 ------- UNITS: ng/dL ------ Reference Range: (348-1197) SubC Low

 

Elevated Cortisol Levels:

let it be known that I work 2nd shift so my sleep schedule is way different than the norm. I was unable to find any information on this so I took it upon myself to measure upon my own personal waking and 2 times during they day, and then before my own personal bed time. I don't know if this ruins or tarnishes the results but i'm sure my circadian rhythm is way off.

  • 1:30 PM (Awaken) - 0.59 mcg/dL Slightly high

  • 7:00 PM - .05 mcg/dL (error??? extremely low)

  • 11:16 PM - .26 mcg/dL High (< OR = 0.09)

  • 3:20 AM (Bed) - .20 mc/dL High (< OR = 0.09)

 

Here are the reference ranges provided by Quest:

  • 8-10 AM: 0.04-0.56

  • 4-6 PM: < OR = 0.15

  • 10-11 PM: < OR = 0.09

 

Response to Helpful Supplements

  • Phosphatidylserine – Powerful cortisol reducer / cognitive protector.

    • Severely positive response. Therapeutic. Returns ability to experience emotions/understand how I feel about reality.

  • Ashwagandha – GABA mimic / Anti Inflammatory

    • Increase in sense of well being / increase in cognition. Decrease in brain fog / decrease in feeling of being severely spaced out

  • Samento (Cat's Claw) - Anti Inflammatory / Broad Spectrum Antibacterial

    • Decrease in anxiety – Mind calming

  • Hydrocortisone (Cream / Topically Applied)

  • Lion's Mane

  • Pregnenolone

  • PQQ/Ubiquinol

Labs

Date of Service: 09/18/2014 – Thyroid Panel

  • THYROGLOBULIN ANTIBODIES <1 < or = 1 IU/mL CB

  • THYROID PEROXIDASE ANTIBODIES 1 <9 IU/mL CB

  • T4, FREE 1.2 0.8-1.8 ng/dL BH

  • TSH 2.16 0.40-4.50 mIU/L BH

  • T3, FREE 3.6 2 .3-4.2 pg/mL BH

  • CORTISOL, TOTAL 13.0 mcg/dL CB

    • Reference Range: For 8 a.m.(7-9 a.m.) Specimen: 4.0-22.0

    • Reference Range: For 4 p.m.(3-5 p.m.) Specimen: 3.0-17.0

    • Please interpret above results accordingly *

  • T3 REVERSE, LC/MS/MS 17 ng/dL EZ


 

Date of Service: 09/05/2014 – T Level Investigation Panel

 

Free Testosterone @ 8.9 ------- UNITS: pg/mL ----- Reference Range: (9.3-26.5) 
Total Testosterone @ 399 ------- UNITS: ng/dL ------ Reference Range: (348-1197) 
TSH @ 1.19 --------------------- UNITS: UIU/ML ----- Reference Range: (0.34 - 5.60) 

  • FSH 3.0 1.6-8.0 mIU/mL BH

  • LH 4.0 1.5-9.3 mIU/mL BH

  • PROLACTIN 9.1 2.0-18.0 ng/mL BH

  • ESTRADIOL 25 < OR = 39 pg/mL BH

 

 
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