Hi there, I am new here 27 Male in Florida - currently awaiting to be tested for Lyme but believe I finally have discovered what has been wrong after noting a change in symptoms and looking at my most recent Medical Test! I have had a series of Physical and Neuro-problems really starting in 2012. I lived in Canada (Ottawa Area Moderate Lyme Risk Area) for a year at 21 and went to a music festival the same year in another Lyme Risk disease area, before returning home to FL (where Dr's don't have much training for lyme). The past 5 years I've had symptoms start basically out of know where and continue to evolve, despite seeing many Neurologist, Psychiatrist, Psychologist, Etc, and trying many medications. It still remains unclear what I'm diagnosed with- seizure disorders, psychological disorders have been attached and ruled out- This year alone I've gotten quite a lot of Brain/Blood testing, looking for any answers and I think I finally found one!
After my first testosterone injection on Friday. Within 24 hours, the “visual snow” I've had for over 5 years which has always been “like white tv static” when my eyes are closed or
open in the dark, is now 85% back to normal it feels (darkness). I googled “visual snow” and “testosterone” and found research about
Lyme disease as a connection. I had a large majority of the symptoms and the time line of how they progressed really feels like its a text book case. Then I saw this research about
frontal and parietal lobe dysfunction and relationship to Lyme, below. Spec results showed the same
location of dysfunction which is in 75% of Lyme Patients. My Liver enzymes high are related to Lyme, too. The symptoms that doctors have had no answers for nearly 6 years is starting to sound like Lyme- I have only begun researching- but after so many misdiagnosis in the past, I'm Holding my breath- I know Lyme Disease is reaching epidemic levels and is highly elusive. Doctors don’t understand it especially in the South (FLORIDA). And I've read that the tests are 50% inaccurate. Some people have gone a dozen years before they figured it out.
I am just wondering if anyone has any guidance- if this sounds as much as chronic Lyme Disease to you guys as it does to me! I would be diagnosed after now roughly 5 years of searching- this almost seems too good to be true after my experience.
Symptoms started 2012-
Chronic Tight and painful Neck & Swollen Left Knee- for the first time I started seeing a Chiropractor.
Anxiety begins to increase, along with bouts of depression, insomnia gets much worst.
New digestive problems- lost appetite, major weight loss 115lbs currently 170lbs, nausea daily.
SUMMER 2013- MAJOR NEURO PROBLEMS START UP.
Vision problems- Visual snow (
open and closed eye), Floaters, Star-bursting, Hypersensitive to light, after images from light. Double vision occasionally, and rare times lazy/double vision.
HYPERSENSITIVE to surroundings- noise and light made going to some places unbearable, more Agoraphobia.
Facial Twitching- on the left side under eye, drooping/lazy eye (at rare times).
Hands tremble and unsteady & uncontrolled muscle tremors.
Major Brain Zaps - Felt like I was getting shocked by electricity- it'd shoot from my brain down my spine and make my muscles tense and body jolt.
Worst insomnia - never wake well rested. Chronic Fatigue.
Seizures-Begin to have Partial Mal Seizures- mostly at night or with stress- felt like being electrocuted and caused repetitive convulsive jerks and muscle spasms and tension, body felt tingly, communication limited by a stutter or repitive sss sounds, Diagnosed with Temporal lobe epilepsy after seizures- Seizure medicine has had no effect.
Panic Attacks- When under more and more stress and pressure - less cognitive I am, from shaking and stuttering, to full on - nearly blacking out to sleep after vomiting.
SPEECH STUTTER- Begin to stutter when having a seizure/panic attack.
BRAIN FOG begins - begin having a poor memory - can't recall events with others.
Immune system constantly under fire - Several Sinus Infections, Flu, Cold.
Major Shingles outbreak the same year all the neuro stuff started. Shingles is extremely rare in young adults and often misdiagnosed Lyme Disease.
Dental problems - Bone loss in Molars, Cavities.
2017 Problems still ongoing plus -
Constipation, Bloating, Chills/ Full Body Sweats, Nausea- vomiting, Dark Urine
Hypersomnia & Insomnia - Sleep for 15 hours waking unrefreshed, sleep a few days, then up a few days with very little sleep if at all- usually skip sleep to stay on routine. Makes living a normal life impossible. While working could fall asleep accidentally.
Chronic Fatigue - Always tired physically and mentally.
Brain Fog Extreme- CARELESS MISTAKES Ex: leave front door
open, loose keys or credit card, can't remember faces/names, I'm a History Major so this is uncommon.
High HEART RATE ~110+ RESTING - Take Attenol to keep it down to 80.
MEDICAL EVIDENCE GATHERED OVER PAST MONTHS:
SPECT BRAIN Scan Result- ABNORMALITIES FOUND IN LEFT FRONTAL LOBE AND IN BOTH PARIETAL LOBES.
72 HOUR EEG- ABNORMAL SHOWED PROLONGED ALPHA-WAVE STATE ESP. DURING SLEEP - SO I'M GETTING VIRTUALLY VERY LITTLE DEEP R.E.M. SLEEP.
QEEG IMAGES SHOW ABNORMALITY IN THE SAME AREA OF THE LEFT FRONTAL LOBE AS SPEC SCAN. ALONG WITH ALPHA/MU WAVE ISSUES SHOWING DYSFUNCTION IN THE FRONTAL LOBE, ALONG WITH RECONFIRMING THE 72 HOUR EEG INFO.
MRI- was Normal- Tested for Parkinson's it was Negative.
**75%** OF SPECT BRAIN SCANS FROM PATIENTS WITH CHRONIC LYME DISEASE SHOW ABNORMALITIES - IN THE FRONTAL, TEMPORAL, AND PARIETAL LOBES. MRI SCANS IN THE SAME PATIENTS SHOW ONLY 14% OF SCANS ARE ABNORMAL. (VERY SIMILAR TO MY SPECT SCAN WHICH SHOWS 3 DISTINCT AREAS ALL IN THE REGIONS OF THE BRAIN THAT LYME IS CORRELATED WITH)*(When I got the SPECT SCAN the neurologist had no reason as to why the abnormalities were there - currently unknown reason)
https://www.ncbi.nlm.nih.gov/pubmed/22889796
BLOOD TEST - I went to a general physician for lab work (2 issues, rest was normal)
ELEVATED LIVER ENZYMES- My ALT/AST count are completely off about
2-3 times the normal amount for a non-drinker(~60& ~160), just had ultrasound- results come in Mon/Tues.
LOW T Count- my testosterone level is “that of a 99 year old man” at 160. Unsure why.
IMMUNE PROBLEMS
MAJOR SHINGLES outbreak at 22 the same year all the Neuro problems began,
location was back of neck/side of head. Started with extreme muscle pain and stuffiness felt like a whiplash accident- Often Misdiagnosed.
ABNORMAL I.Q./ EXECUTIVE FUNCTION -
I.Q. AS HIGH AS 130 VERBAL (VERY SUPERIOR INTELLIGENCE/ MENSA LEVEL) - Executive Function is only 83 (Mildly Impaired). Nearly a 50 point difference showing possible frontal lobe dysfunction- As a kid I could think much faster, sharper, recollect more, now due to Brain Fog I feel I'm less than half as capable as I used to be.
QEEG RESULTS BACK UP BOTH 72 HOUR EEG AND SPECT SCAN -
IMAGE SCANS SHOW ABNORMALITY ON THE SAME AREA OF THE LEFT FRONTAL LOBE.
QEEG-Poorly developed alpha rhythm- an indicator of the brain's ability to self-regulate and can be thought of as the brain's ability to relax and Disengage when necessary.
QEEG shows some posterior slowing. Slowing in the posterior region may be related to learning disabilities, sensory integration problems, or difficulty with integration of other information.
QEEG shows a prominent mu rhythm of alpha, it has also been associated with frontal lobe dysregulation.
QEEG also indicates fast frequency beta elevations. This pattern is typically associated with anxiety. Subjective reports include worry, rumination, or a busy mind that is difficult to quiet. This finding of anxiety at the level of the brain is commensurate with anxiety found at the level of the body with the Biofeedback PPA (see below).
BIOFEEDBACK Psychophysiological Assessment (PPA) indicate he holds long-term muscle bracing in his face, head, neck, and shoulders. His are likely the result of excessive muscle tension/muscle activity seen in these areas. Additionally, he demonstrates heightened autonomic arousal associated with his stress symptoms of panic, rumination, stuttering, making repeating noises, shakiness, muscle tension, rapid heartbeat, ragged breathing, head pressure, brain fog, light sensitivity, double vision, and feelings of "brain zaps."
I.Q. ABNORMALITIES
Results intellectual testing indicated he has an overall IQ in the "High Average" range of functioning (FSIQ=113). Upon closer examination of the subscales of his intelligence testing revealed that his Verbal Comprehension (VCI=130) was in III the "Very Superior" range and his Perceptual Reasoning (PRI=115) skills were in the "High Average" range. His Working Memory (WMI=100) and his Processing Speed (PSI=92) skills were in the "Average" range of functioning. In summary, intellectual capabilities, as measured by VCI and PRI, were significant higher than his abilities to use his intelligence, as measured by WMI and PSI. Because of expressed concerns about
neurocognitive functioning, He was administered the Neuropsychological Assessment Battery: Executive Functioning Module (EXE). Due to his "High Average to Very Superior" IQ scores on the WAIS-IV in most areas, a low performance on the EXE (83=Mildly Impaired) was significantly less than his capabilities, as exhibited by his general intelligence. This may represent a weakness in executive function or frontal lobe abilities, at this time, including: impulsivity, judgment and focus. His attentional abilities are good, as measured by IVA test of continuous performance being 'within normal limits' on both the Visual and Auditory components.
URINALYSIS METABOLIC ANALYSIS MARKERS PROBLEMS:
CRITICAL LOW VITAMIN B6 - NEED FOR B1, B2, B3, B6, B7.
GASTROINTESTINAL FUNCTION MALABSORPTION - PHENYLACETIC ACID- CRITICAL LOW PAA .18
BACTERIAL DYSBIOSIS- BENZOIC ACID - CRITICAL LOW .12
NEUROTRANSMITTER METABOLITE ELEVATED KYNURENIC ACID - 8.5
TOXIN LEVELS ELEVATED - MTBE ELEVATED
Post Edited (DangerLewis) : 7/8/2017 5:36:19 AM (GMT-6)