Mystery Condition - Cognitive Decline
 

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.

Theoretical Diagnoses

• 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 Mutation?

Symptoms

If you are aware of the situation this is the symptom list for the "negative/cognitive" effects of Schizophrenia, absent of the "positive" ones which include paranoia, delusions, and hallucinations. I started treating from this diagnosis and received zero relief from all the typically powerful treatments. Seems as if this is not actually what I have even though the symptom list is me to a T.

Confirmed Disturbances

Low Temperatures

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:

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

Helpful Supplements & Response

• 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
• PQQ/Ubiquinol
• Adderall
• Modafinil

Unsuccessful Supplements/Medicines/Pharmaceuticals

• Sarcosine
• Sarcosine + DAA
• Pregnenolone
• N-Acetyl Cysteine
• Folate (Metafolin)
• L-Methylfolate
• Niacin
• High EPA (2g) Fish Oil
• Rhodiola Rosea
• Banderol
• Pinella
• Na-R-Alpha Lipoic Acid
• Iodine Replacement/Supplementation
• Dessicated Adrenal
• Reishi Mushroom
• Piracetam
• Noopept
  
• Effexor
• Zoloft
• Vyvanse
• Welbutrin
• Abilify
• Mirtazapine

Labs

Date of Service: 09/18/2014 – Thyroid Panel (All normal)

• 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 (Subclinically low T, slightly elevated E2)

• 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

Comprehensive Lab Work (Chem/Lipid Panel etc):
Unable to share links, so I'm not sure how to share this. I scanned the documents and uploaded the pictures. They all turned out normal though, just wanted to share everything I had if I could.

This is a lot of information and a lot to process. I have a lot of theories with evidence supporting them with each piece of evidence but after some of my fundamental theories being put to rest by lab results and testing (Schizophrenia, Low T, Hypothyroid, Adrenal Fatigue) I'm basically lost. I don't know exactly where to even begin looking anymore. I plan on seeing an Endo and Neuro ASAP but until then I'm still doing as much research and discussion as possible to try to put this nonsense to rest, or at least find some comfort in a diagnosis.

If you want any more details on any of the information provided feel free to ask, I will be checking this and other threads like it every day. Thanks guys, it means the world to me.

Welcome to NeuroTalk:

Did you get your B12 measured? And your Vit D?

Can you tell us if you are a vegetarian, and what your diet is like?

Also what is your body build? Tall? Slightly overweight? Difficulty with putting on muscle? That low T signals something for me, but I need to know more about you.

Welcome AlmostEasy. :Tip-Hat:

Hey guys! Thanks for the welcome

Yes I did actually, once I hit the 10 posts or whatever I'll update with links to everything I've been working on, and my additional labs.

25-OH Vit D @ 26.5Lf ng/dL (30.0-100.0)
Vitamin B12 PG/ML (180-914)

I've been supplementing with about 5k IU/day since I learned my Vit D is low, that was about 2 years ago. I've also been using "NOW Foods Ultra B-12 Liquid, 4-Fluid Ounces" without success. It does give me a subtle boost but it's definitely weaker then even half a cup of coffee.

My build is tall and lean/athletic. I'm actually slightly under weight (always have been) and difficulty putting on muscle very much yes. I've been able to do it but only because of how dedicated I tend to be towards my goals. In the gym 3-4 days every week and literally counting calories until the weight goes on. I've less drive to do this nowadays but I'm still trying and having some success. Most kids putting in the effort I do would probably blow up pretty quickly. It's quite a grind for me. Not making excuses, but just saying.

Thanks for the interest, it means a lot. Any more questions please ask, I'll be checking daily.

Whoops, forgot to put in "684" for B12 level. Unable to edit my post, sorry!

My son has a male friend who cannot build muscle and remains weak.
No amount of working out works for him(he also has lowT and is in his twenties like you.

After much evaluation by a doctor, this doctor decided to test him with a DNA test for Klinefelter's syndrome. (fragileX).
These men have 2 X chromosomes and 1 Y. They often go undetected for life, unless some medical reason is present for further testing. As expected, my son's friend tested positive for this. Klinefelter patients have many signs of ADHD, poor energy, and slowed cognition.

Here is a more detailed article:
http://ghr.nlm.nih.gov/condition/klinefelter-syndrome
Not all Klinefelter patients demonstrate all the physical characteristics. But lowT is the most common indicator.

Since you are exploring so many avenues for your symptoms, I'd get that DNA evaluation to rule out Klinfelter's. LowT in a young male can also be due to some pituitary dysfunctions, and an endocrinologist is best to see for that aspect.
You will need to take that B12 with an empty stomach, and keep it in the frig once opened. MethylB12 is not stable in heat, in liquid form.

"Boosts" from B12 are not really present except in the first few doses. Was this before any supplement? You have to stop the supplement 3-7 days before having testing done, or false elevations will result.

Interesting. I do have glandular gynecomastia (caused me a lot of strife in my youth - it's still very minimal though) and reduced facial hair for sure. My father said he could grow a full mustache at 19 and I'm not even close to hitting that.

I suppose that's a possibility but up until I was about 21 I absolutely excelled academically, and my sex drive used to be huge. It is slightly lower now but it's still there. From a brief reading it looks like people have developmental problems their entire life?

But then again my tests and some symptoms don't lie. I'll begin looking more into this! Thanks!

Many Klinefelter patients remain undiagnosed for life.

And they all present differently too. There is a great variance
among them. You certainly do seem to have a cluster of symptoms suggesting it. Klinefelter men may be teased or bullied in school as well, especially the ones with more obvious external signs. (there are photo images on Google of the common body types...but not all Klinefelter patients exhibit those characteristics.)

Treatment is with a testosterone gel or injection. The major issues I think are infertility (the testosterone gel makes this worse) and the increased risk of breast cancer and autoimmune disease.(which they have to be aware of should they occur later in life).

There are also toxins in fire retardant furniture that we are exposed to that are hormone disruptors.
http://en.wikipedia.org/wiki/Endocrine_disruptor
There have been media reports this week in fact about removing fire retardants from bedding and furniture now.

Alright, I'll make sure to mention it to my GP/Endo. I'm pretty sure my GP will write me a lab write up for anything I bring her that makes sense.

Until then does anything else stand out? I realize I may have a very tertiary 3rd derivative condition, well almost certainly, but any additional theorizing helps.

Thanks!

Do the DNA test first... see what that shows if anything.

Good luck.