12 replies to this topic

[echopraxia]

Hey, really hoping I can get some good input on how to get my various symptoms properly treated. I feel like I'm spinning my wheels with my current doctor, the appointments are limited to 30 minutes and there isn't even enough time to properly talk about one of the issues, let alone all of them. The other option is walk-in clinics, which I'm starting to consider just on the off-chance I run into someone who's willing to test for a bunch of different things and give referrals. Things have just been progressively getting worse both physically and mentally, and I'm starting to reach the point where the energy of interacting with the medical system is too much. Appreciate any input.

 

Age: 26

Sex: Male

Height: 6'0

Weight: 150lb 

Race: Caucasian

 

Possibly Relevant Family History: Mother: OCD, Hypoglycemia, Anxiety, Depression

Uncles on Mothers side: Half have "Multiple Exostoses". One has Fibromyalgia. Three have OCD/Tics/Anxiety/Depression.

Grandfather on Mothers side: Progressively worsening allergies in 40s until he was allergic to most things. Grave's disease near the end of that. Alzheimers. Grandmother on Mothers side: Multiple Sclerosis

 

My medical history:

Jaundice@Birth, refused milk, needed special formula

Sleep-Onset Insomnia 6+

Tourettes & OCD at 10-11ish

Frequent Cold Sores, 6ish/year 10-24yo

Chronic Migraines(20x/month average) 10-18

Appendicitis

13 Patellar Issues & Ulnar Nerve Issues @ 16

Pneumonia, Chronic Bronchitis, COPD @ 17

Went to doctor for being fatigued all the time, Hypothyroid diagnosis @ 18[25mcg T3. Quit T3 at 21ish. Recently tested Thyroid: 3.7 TSH, 22 FT4. Waiting for results on a re-test to see what T3 is]

Tremor(noticed by doctor) @ 18-26

High HR(noticed by doctor, 90-100bpm resting) @ 18-26

High BP(noticed by doctor, avg 135-140/83-90) @ 18-26

Low testosterone diagnosis @ 19 [TRT 100mg/wk] 

Depression and Anxiety steadily worse 19-26

ADHD Diagnosis @ 24

Autism Diagnosis @ 25

Mild Sleep Apnea Diagnosis @ 25

Shingles @ 25

Seizure @ 25

 

I've always ate healthy foods, exercised, etc etc. People who know me well make comments like "You're the unhealthiest healthy person I know".

 

Current Symptoms that are bothering me: Chronic fatigue. Tired all the time, spend half the day in bed. Get an average of a couple hours of productivity during the day. At this point, neither coffee nor modafinil put a dent in it. Sleep 8-10 hours, still wake up exhausted. Occasionally sleep 18-24 hours.

 

Progressively worsening cognitive function. Short term memory getting worse.

 

Certain triggers(standing too long, showers, certain foods) cause blood to pool in hands and feet, toes turn dark red to purple/blue, white if I touch with very slow return to red, numbness/tingling/pain/heat.

 

Going from sitting to standing causes(on occasion): dizziness, light headedness, blurry vision, eye pain(feels like pressure buildup/being squeezed)

 

Most foods cause either cognitive or GI issues. Can cause anxiety/irritability, depression, fatigue, diarrhea, stomach pain, the standing to sitting issues, the blood pooling in extremities issues. Meat, Water, & most vegetables seem to be excluded from this. Almost everything else seems to cause some sort of problem. Specific foods that I know I’m intolerant to: wheat, potatoes, peanuts/other legumes, lactose, rice, sunflower oil, most canned foods.

 

Shooting nerve pain if I exercise for more than 5-8 minutes, used to exercise daily for an hour at minimum

 

Numbness in left arm from knee to fingertips of pinkie and ring finger.

 

Heavily decreased sweating/body temperature regulation. Used to wake up with soaked sheets every day from maybe 18-23. Would constantly have large wet patches on back of shirts. Now I can have 5 blankets on and not sweat at all, can’t remember last time shirt got damp.

 

Misc other info: Recent blood panel showed Calcium above reference range by a small amount(maybe 10-15% above the top of reference range). Blood panel from a few years ago showed Alkaline Phosphatase at 150 on a scale of 20-100, and GGT at 11 on a scale of 10-some high number. Waiting for retest results on those as well.

 

Had one really bad drug reaction. Got prescribed Brintellix/Vortioxetine in August of this year at the lowest dose(5mg for first 4 days, then 10mg). Within 6 days had bad reaction that I went to the hospital for: blood pooling in feet enough that within 10 seconds of standing my feet were numb and swollen, high fluctuating heartrate(slow, to very fast, etc etc), shaking, myoclonic jerks originating from a mid-lower spine location. At hospital BP was 180/something. They basically dismissed it as sides from the drug and let me go once my BP dropped a bit. I quit the antidepressant after that, and had the myoclonic jerks up until mid october or something.

 

I have no idea what to do. The standard “one issue per visit” at doctors offices seems to eliminate any chances of dealing with my issues as they all seem interrelated. I’m tired of dealing with all of this. I can’t work, I don’t have the energy to maintain social relationships or keep my place clean, and I wouldn’t even have a home if it wasn’t for family support. I live in Canada, so while it’s free medical care, it’s incredibly hard to convince doctors to do blood tests for a variety of things. It’s also incredibly hard to accurately convey how crippling the fatigue is. I’ve tried a bunch of SSRIs, Wellbutrin, SNRIs, Modafinil, Dexedrine, Ritalin, Adderall, Strattera. Nothing helps. Or it helps slightly(e.g. I can get out of bed), but not enough to actually feel like life is worth living. I get told things like “keep a sleep diary”, but it’s hard to explain that even the energy for that is more than I have.

 

Any idea of underlying things that could be causing all this? What type of doctors should I be getting referrals to? As of now a CT scan is clean, and I have a pending referral to an endocrinologist. I can't afford a further sleep study at this time(polysom is 800$ and 1.5 year wait, my Apnea test was on some take-home thing they give you). I'm thinking an Immunologist and a Rheumatologist? Are there any blood tests that are worth trying to get the family doctor / walk-in clinics to give me while waiting for specialist referrals?

Edited by echopraxia, 25 November 2017 - 04:31 AM.

[Eryximachus]

You need to be committed to a facility for several months where all aspects of your life can be controlled and monitored.  If you have reached the point where you cannot function in society, i.e. work or have relationships, it is time for emergency intervention.   

 

The only thing that really sticks out at me is lack of breastfeeding as a child, your low body weight, and perhaps the high calcium.  

 

Cholesterol that has not been heated is essential for the functioning of your brain.  Cholesterol is in fact the largest component of your brain after water.  Children raised on formula have all kinds of problems. What is more curious is your were born jaundiced.  Cholesterol only comes from 2 sources.  Food and your liver.   So, it sounds like you got screwed. 

 

Try a smoothie in the morning for several weeks.  Use a coconut water base, or perhaps silica water if you can afford it, some peanut butter or coconut oil, some frozen fruit, and 4 raw egg yolks. Make sure you separate the egg whites, which contain enzyme inhibitors that interfere with digestion.  

 

As for blood tests, low blood plasma levels of cholesterol are the only known biological predictor of suicide.  When it comes to psychiatry, it is one of the few real biological metrics we have.  So, I would start with that.  

 

Finally, cut our dairy products and anything with calcium.  Calcium is very bad for you.  Your heart muscle functions by deporting calcium via an osmotic reaction. Hence, calcium levels in the blood must remain within normal parameters.  If it gets to high, your body produces more osteoblast cells in your bones.  As with all cells, there is a finite number of times new cells can be made. Once that happens, you have osteoporosis. Your risk of heart attacks goes up significantly, especially if you don't use a calcium channel blocker, and it causes circulatory problems as your arteries become calcified. 

 

Also, eat raw egg yolks.  Don't eat dairy products or take calcium supplements.  

 

 

[jack black]

tough case, no average MD can handle this.

TSH for treated hypothyroid is too high. I'm thinking undertreated. Check reverse T3 as a part as thyroid panel. why hypothyroid in the 1st place? Hashimoto's?

what units for the serum testosteron? are those mmols?

i'm thinking you should see a good endocrinologist.

if that fails, could it chronic fatigue syndrome? did you have EBV infection before it started at the age 18?

[echopraxia]

You need to be committed to a facility for several months where all aspects of your life can be controlled and monitored.  If you have reached the point where you cannot function in society, i.e. work or have relationships, it is time for emergency intervention.   

 

The only thing that really sticks out at me is lack of breastfeeding as a child, your low body weight, and perhaps the high calcium.  

 

Cholesterol that has not been heated is essential for the functioning of your brain.  Cholesterol is in fact the largest component of your brain after water.  Children raised on formula have all kinds of problems. What is more curious is your were born jaundiced.  Cholesterol only comes from 2 sources.  Food and your liver.   So, it sounds like you got screwed. 

 

Try a smoothie in the morning for several weeks.  Use a coconut water base, or perhaps silica water if you can afford it, some peanut butter or coconut oil, some frozen fruit, and 4 raw egg yolks. Make sure you separate the egg whites, which contain enzyme inhibitors that interfere with digestion.  

 

As for blood tests, low blood plasma levels of cholesterol are the only known biological predictor of suicide.  When it comes to psychiatry, it is one of the few real biological metrics we have.  So, I would start with that.  

 

Finally, cut our dairy products and anything with calcium.  Calcium is very bad for you.  Your heart muscle functions by deporting calcium via an osmotic reaction. Hence, calcium levels in the blood must remain within normal parameters.  If it gets to high, your body produces more osteoblast cells in your bones.  As with all cells, there is a finite number of times new cells can be made. Once that happens, you have osteoporosis. Your risk of heart attacks goes up significantly, especially if you don't use a calcium channel blocker, and it causes circulatory problems as your arteries become calcified. 

 

Also, eat raw egg yolks.  Don't eat dairy products or take calcium supplements.  

 

 

Don't trust the medical system at all, there's no level of "things being bad" that would end in me putting my health in their hands. 

 

Will try the egg-yolk smoothies though. I do notice that eggs noticeably make me feel better in ways that other foods don't -- when I was having wakeful myoclonic jerks, they were one of the only things that reduced them. Stopped eating them cause they irritated my stomach, but will try just eating the yolks. 

 

Don't eat dairy or supplement calcium. 

 

One thing that I just found out -- apparently I wouldn't breastfeed, and even when I switched to the formula there were issues. I'd eagerly drink the formula, but afterwards I would cry and cry and cry. Doctor told my mom to just add Oval to the formula, and apparently that dealt with it. 

 

 

 

tough case, no average MD can handle this.

TSH for treated hypothyroid is too high. I'm thinking undertreated. Check reverse T3 as a part as thyroid panel. why hypothyroid in the 1st place? Hashimoto's?

what units for the serum testosteron? are those mmols?

i'm thinking you should see a good endocrinologist.

if that fails, could it chronic fatigue syndrome? did you have EBV infection before it started at the age 18?

Thyroid isn't treated anymore, I stopped a few years into treatment and felt fine so never went back on. Was tested a couple times between then and now and was never out of range. Trying to get RT3 tested as I think it seems possible that I have a thyroid resistance or T4 conversion issue given the recent labs being a bit weird, but it took effort to even get them to test T3, let alone reverse T3 or autoantibodies etc. Was never determined why I was hypothyroid, doc just gave me T3. Testosterone is nanograms/decileter. 

 

Should be getting a referral to an endocrinologist as soon as results from latest blood test comes back, so hopefully that helps. I've heard so many stories of useless endos that I'm not expecting much though. 

 

Looking at the Canadian working case definition for CFS it sounds incredibly relatable. 

 

"After relatively normal physical or intellectual exertion, a patient may take an inordinate amount of time to regain her/his pre-exertion level of function and competence. For example, a patient who has bought a few groceries may be too exhausted to unpack them until the next day"

 

That especially. Things like groceries, errands, etc tend to drain me so much that I essentially go in with the assumption that it will be the last productive thing I do all day. When cleaning, I'll often start and do some stuff, and 5-10 minutes in I have to lay down. Something I didn't even notice is just how much I have to lay down in life. Like, after basically any errand, after doing cognitive work for any period of time, after long conversations, etc. At some point I'll just have my functioning drop tremendously, and have an overwhelming urge to lay down. Then maybe 30m-3h later I can do something else. 

 

"It is easy to lose track of things and/or many things are forgotten: names, numbers, sentences, conversations, appointments, ones’ own intentions and plans, where things are in the house, where one has left the car, whether one has brought the car, where one is and where one is going. The memory dysfunction tends to primarily affect short-term memory. There are selective deficits in memory processing arising against a background of relatively normal cognitive functioning in ME/CFS patients. They experience more difficulty in recalling information under conditions of greater semantic structure and contextual cues, the opposite of what is found in controls and patients with other sorts of CNS impairments. They also experience difficulty maintaining attention in situations that cause them to divide their efforts, e.g., between auditory and visual channels."

 

All the memory issues are familiar. I've definitely developed lots of coping mechanisms. I have five whiteboards in my room. I have a document that I use to keep track of intentions, values, goals, ideas, plans. The reason I keep that document is that I find I almost..lose my personality if I don't keep track of it. Sometimes I'll go four or five months without looking at it, and I'll be really anxious and depressed and I'll come up with a bunch of ideas to try to tackle the problems I'm having, then I'll look at the document and I apparently already came up with better solutions to those problems in the past. Writing that down makes me slightly more worried than I was initially, I never put much thought into that, but it seems like a worrisome level of memory problems.

 

The difficulties maintaining attention in situations that divide attention is also very familiar. I won't even bother having conversations with people if TV or music is on. Lately there's construction going on outside my building, and it overwhelms me so much that I can't even think. Like I can't even figure out the best plan of action to escape the sound, and often end up just laying down until it's over. 

 

"Overload phenomena affect sensory modalities where the patient may be hypersensitive to light, sound, vibration, speed, odors, and/or mixed sensory modalities. Patients may be unable to block out background noise sufficiently to focus on conversation. There is also cognitive/informational overload–inability to multi-task, and trouble making decisions. There is emotional overload from extraneous emotional fields that unduly disturb the patient. There is motor overload–patients may become clumsy asthey fatigue, and stagger and stumble asthey try to walk, are not able to keep a straight line, as well as showing generalized and local weakness, and need to slow down their movements"

 

That also sounds exactly like my experience.

 

I don't think I ever had an EBV infection, but I did have some sort of infection -- whatever caused the COPD. It was called pneumonia, but I don't think there were ever blood tests. That happened around the same time that there was a raw sewage backup in our basement, caused by a severe rainstorm that resulted in the water main breaking. Took the city a while to deal with that, and who knows if they dealt with it properly. It's always seemed a bit weird to me that both of my pets(dog and cat) died from acute kidney failure around the same time I got that sickness. 

[YOLF]

Phase 1:

1. Take centrophenoxine, and perhaps desoxyn if they'll give it to you. I think Centro might even be Rx in Canada, if not, it's a supplement just across the border.

2. Get an allergy test (both food and environmental) and do the allergy immunotherapy (regular subQ shots of your allergens). Also learn the APG IV phylogeny system. Along with the allergy tests it will predict what you are allergic to. I'd actually do these tests first before changing anything as the immune system is more maleable than most think, you might have to do this twice. Stay away from ANY and ALL  things that give you a reaction, even if they are mild. The allergy test is largely incomplete and there are lots of molecular relatives to things that you are allergic to that will come and go as allergies depending on how regular your exposure to them or their molecular relatives are. Be ready to have a boring diet for a while, keep it simple and try not to experiment with new things.

3. Remove amalgam fillings if you have them.

4. Write everything down and keep track of how much you get through with your doctor, or just let them read it, that might save some time.

5. Get four (more) shots of the varicella vaccine (you'll have to look the schedule up, I don't remember it) for chicken pox, a French government organization of some kind iirc found that it this is effective for virtual elimination of herpes/cold sores. You might also want to get the new shingles shot, even if you've gotten over it. It confers novel immunity and may help. 

 

Do that and I'll tell you what to do next.

[jack black]

Looking at the Canadian working case definition for CFS it sounds incredibly relatable. 

 

"After relatively normal physical or intellectual exertion, a patient may take an inordinate amount of time to regain her/his pre-exertion level of function and competence. For example, a patient who has bought a few groceries may be too exhausted to unpack them until the next day"

 

That especially. Things like groceries, errands, etc tend to drain me so much that I essentially go in with the assumption that it will be the last productive thing I do all day. When cleaning, I'll often start and do some stuff, and 5-10 minutes in I have to lay down. Something I didn't even notice is just how much I have to lay down in life. Like, after basically any errand, after doing cognitive work for any period of time, after long conversations, etc. At some point I'll just have my functioning drop tremendously, and have an overwhelming urge to lay down. Then maybe 30m-3h later I can do something else. 

 

"It is easy to lose track of things and/or many things are forgotten: names, numbers, sentences, conversations, appointments, ones’ own intentions and plans, where things are in the house, where one has left the car, whether one has brought the car, where one is and where one is going. The memory dysfunction tends to primarily affect short-term memory. There are selective deficits in memory processing arising against a background of relatively normal cognitive functioning in ME/CFS patients. They experience more difficulty in recalling information under conditions of greater semantic structure and contextual cues, the opposite of what is found in controls and patients with other sorts of CNS impairments. They also experience difficulty maintaining attention in situations that cause them to divide their efforts, e.g., between auditory and visual channels."

 

All the memory issues are familiar. I've definitely developed lots of coping mechanisms. I have five whiteboards in my room. I have a document that I use to keep track of intentions, values, goals, ideas, plans. The reason I keep that document is that I find I almost..lose my personality if I don't keep track of it. Sometimes I'll go four or five months without looking at it, and I'll be really anxious and depressed and I'll come up with a bunch of ideas to try to tackle the problems I'm having, then I'll look at the document and I apparently already came up with better solutions to those problems in the past. Writing that down makes me slightly more worried than I was initially, I never put much thought into that, but it seems like a worrisome level of memory problems.

 

The difficulties maintaining attention in situations that divide attention is also very familiar. I won't even bother having conversations with people if TV or music is on. Lately there's construction going on outside my building, and it overwhelms me so much that I can't even think. Like I can't even figure out the best plan of action to escape the sound, and often end up just laying down until it's over. 

 

"Overload phenomena affect sensory modalities where the patient may be hypersensitive to light, sound, vibration, speed, odors, and/or mixed sensory modalities. Patients may be unable to block out background noise sufficiently to focus on conversation. There is also cognitive/informational overload–inability to multi-task, and trouble making decisions. There is emotional overload from extraneous emotional fields that unduly disturb the patient. There is motor overload–patients may become clumsy asthey fatigue, and stagger and stumble asthey try to walk, are not able to keep a straight line, as well as showing generalized and local weakness, and need to slow down their movements"

 

That also sounds exactly like my experience.

 

 

This is very interesting. Frankly, I was not aware of those specific memory/sensory deficits in CFS. It does have some resemblance to my problems too and I have low energy, too. Because of the sensory issues, I suspected high functioning autism as the closest I could relate to.
 

The things that help me is boosting testosteron levels (via HCG shots), and taking NAC, ALCAR, DMAE in addition to the usual vitamins (B,C, D, and E) and fish oil.

Interestingly, the centrophenoxine YOLF mentioned above also contains DMAE.

I do have some food allergens that I'm unfortunately addicted to and still a few mercury fillings that I'm slowly replacing.

He might be right with his advice and I would like to know where he is coming from on this.

 

One more thing. Physical activities exhaust me, but taking a cold shower afterwards (even now when it's cold and not much sweating) seems to help. Try it and report back.

Edited by jack black, 29 November 2017 - 11:35 PM.

[YOLF]

 

Looking at the Canadian working case definition for CFS it sounds incredibly relatable. 

 

"After relatively normal physical or intellectual exertion, a patient may take an inordinate amount of time to regain her/his pre-exertion level of function and competence. For example, a patient who has bought a few groceries may be too exhausted to unpack them until the next day"

 

That especially. Things like groceries, errands, etc tend to drain me so much that I essentially go in with the assumption that it will be the last productive thing I do all day. When cleaning, I'll often start and do some stuff, and 5-10 minutes in I have to lay down. Something I didn't even notice is just how much I have to lay down in life. Like, after basically any errand, after doing cognitive work for any period of time, after long conversations, etc. At some point I'll just have my functioning drop tremendously, and have an overwhelming urge to lay down. Then maybe 30m-3h later I can do something else. 

 

"It is easy to lose track of things and/or many things are forgotten: names, numbers, sentences, conversations, appointments, ones’ own intentions and plans, where things are in the house, where one has left the car, whether one has brought the car, where one is and where one is going. The memory dysfunction tends to primarily affect short-term memory. There are selective deficits in memory processing arising against a background of relatively normal cognitive functioning in ME/CFS patients. They experience more difficulty in recalling information under conditions of greater semantic structure and contextual cues, the opposite of what is found in controls and patients with other sorts of CNS impairments. They also experience difficulty maintaining attention in situations that cause them to divide their efforts, e.g., between auditory and visual channels."

 

All the memory issues are familiar. I've definitely developed lots of coping mechanisms. I have five whiteboards in my room. I have a document that I use to keep track of intentions, values, goals, ideas, plans. The reason I keep that document is that I find I almost..lose my personality if I don't keep track of it. Sometimes I'll go four or five months without looking at it, and I'll be really anxious and depressed and I'll come up with a bunch of ideas to try to tackle the problems I'm having, then I'll look at the document and I apparently already came up with better solutions to those problems in the past. Writing that down makes me slightly more worried than I was initially, I never put much thought into that, but it seems like a worrisome level of memory problems.

 

The difficulties maintaining attention in situations that divide attention is also very familiar. I won't even bother having conversations with people if TV or music is on. Lately there's construction going on outside my building, and it overwhelms me so much that I can't even think. Like I can't even figure out the best plan of action to escape the sound, and often end up just laying down until it's over. 

 

"Overload phenomena affect sensory modalities where the patient may be hypersensitive to light, sound, vibration, speed, odors, and/or mixed sensory modalities. Patients may be unable to block out background noise sufficiently to focus on conversation. There is also cognitive/informational overload–inability to multi-task, and trouble making decisions. There is emotional overload from extraneous emotional fields that unduly disturb the patient. There is motor overload–patients may become clumsy asthey fatigue, and stagger and stumble asthey try to walk, are not able to keep a straight line, as well as showing generalized and local weakness, and need to slow down their movements"

 

That also sounds exactly like my experience.

 

 

This is very interesting. Frankly, I was not aware of those specific memory/sensory deficits in CFS. It does have some resemblance to my problems too and I have low energy, too. Because of the sensory issues, I suspected high functioning autism as the closest I could relate to.
 

The things that help me is boosting testosteron levels (via HCG shots), and taking NAC, ALCAR, DMAE in addition to the usual vitamins (B,C, D, and E) and fish oil.

Interestingly, the centrophenoxine YOLF mentioned above also contains DMAE.

I do have some food allergens that I'm unfortunately addicted to and still a few mercury fillings that I'm slowly replacing.

He might be right with his advice and I would like to know where he is coming from on this.

 

One more thing. Physical activities exhaust me, but taking a cold shower afterwards (even now when it's cold and not much sweating) seems to help. Try it and report back.

 

Centro is much stronger than DMAE for brain problems. It was actually designed to improve upon DMAE as it was beneficial, but not sufficient for total stroke recovery. Pregnenolone and Diosgenin could help you too.

 

https://iaomt.org/ International Academy of Medical Toxicologists? is where I'm getting the mercury filling information. I'd just have them done all at once with an IAOMT approved Dentist. Videos on the difference and the safety procedures taken are available in youtube also. Look for the one with the kid. Getting ti done at a regular Dentist will poison you. Special equipment IS necessary. Here's an old video they made:

 

Get over your food addiction, it'll literally kill you. Chronic inflammation from allergies WILL cause cancer, so will mercury fillings if not removed. Our Dental Overlords are violating human rights on the level of Nazi Germany imo. The lawsuits would cripple the industry and potentially economies around the world with the transfer of wealth. The rationale for not fixing it is that for many it HAS caused things like bipolar, psychosis, and other potentially disabling conditions, so the attitude is "let sleeping dogs(problems) lay," otherwise it'll be a whole lot of recovery and rehabilitation. Yet the denial for these reasons enables the problem to continue. Our species doesn't exactly have a good human rights record and always has an excuse for things like this. Short of Japan conquering the world (they never got fooled and would consider it dishonourable to use mercury), I'm not sure we're going to see this problem actually get fixed.

 

Physical activities will cause more cellular activity, release mercury from cells which at least include fat, but probably others as well.

 

Mercury toxicity can be a root cause of bipolar, aspergers (atypical), psychosis, and dozens of other diseases. 

 

Oh, and I'm right most of the time, and this time around, I'm more certain than usual that I am. I've helped lots of people remove this stuff very quickly and regenerate from the damage it causes. 

 

BTW, there's zinc in your fillings too, so you shouldn't be short on it... if anything, you need copper.

[jack black]

YOLF, is DMAE/Centro known for effectiveness in chronic mercury poisoning?

Thanks for explaining the dental mercury thing. I believe you are right. I felt much worse when and after one of my fillings cracked and it took weeks to replace it (with a composite one) by a regular dentist and considered removing them all. However, one thing gave me a pause about it. There is a member in my family closely related to myself with similar issues even though she has no metal fillings whatsoever. It's genetic IMHO. She even had a striking episode of severe CFS following infectious mononucleosis (it's a known, but rare complication) and later developed Hashimoto's thyroiditis and this is why I asked the OP about it. I don't remember having infectious mononucleosis myself, but i had a few febrile diseases as a kid, so possibly contracted that early. The OP also has some family history of various mental diseases.

 

We do know that CFS has genetic predisposition:

 

One study showed that patients with CFS tend to have a characteristic set of changes in 12 genes that help the body respond to stress. They showed that a particular combination of gene sequences could predict whether a patient had CFS with over 75% accuracy.

 

The new results fit the existing idea that people develop CFS when events such as infections, injury and trauma disrupt the hypothalamic-pituitary adrenal axis, which is activated by physical and emotional stress. Eventually this has effects throughout the body on the immune and other systems, causing symptoms.

http://www.nature.co...ws060417-8.html

 

BTW, metal fillings have lots of copper and not so much zink:

 

Dental amalgam is produced by mixing liquid mercury with an alloy made of silver, tin, and copper solid particles.^[12] Small quantities of zinc, mercury and other metals may be present in some alloys.^[12]

https://en.wikipedia...gam_(dentistry)

Edited by jack black, 30 November 2017 - 05:21 PM.

[jack black]

 

http://www.nature.co...ws060417-8.html

 

 

 

 

The quoted study, Pharmacogenomics, 7. 355 - 501(2006), is behind a paywall, but if anyone is interested, it was summarized here: http://phoenixrising...iii-the-subsets
 

[YOLF]

YOLF, is DMAE/Centro known for effectiveness in chronic mercury poisoning?

Thanks for explaining the dental mercury thing. I believe you are right. I felt much worse when and after one of my fillings cracked and it took weeks to replace it (with a composite one) by a regular dentist and considered removing them all. However, one thing gave me a pause about it. There is a member in my family closely related to myself with similar issues even though she has no metal fillings whatsoever. It's genetic IMHO. She even had a striking episode of severe CFS following infectious mononucleosis (it's a known, but rare complication) and later developed Hashimoto's thyroiditis and this is why I asked the OP about it. I don't remember having infectious mononucleosis myself, but i had a few febrile diseases as a kid, so possibly contracted that early. The OP also has some family history of various mental diseases.

 

We do know that CFS has genetic predisposition:

 

One study showed that patients with CFS tend to have a characteristic set of changes in 12 genes that help the body respond to stress. They showed that a particular combination of gene sequences could predict whether a patient had CFS with over 75% accuracy.

 

The new results fit the existing idea that people develop CFS when events such as infections, injury and trauma disrupt the hypothalamic-pituitary adrenal axis, which is activated by physical and emotional stress. Eventually this has effects throughout the body on the immune and other systems, causing symptoms.

http://www.nature.co...ws060417-8.html

 

BTW, metal fillings have lots of copper and not so much zink:

 

Dental amalgam is produced by mixing liquid mercury with an alloy made of silver, tin, and copper solid particles.^[12] Small quantities of zinc, mercury and other metals may be present in some alloys.^[12]

https://en.wikipedia...gam_(dentistry)

I'm not about Centro and mercury fillings tbh. It's MoA is removing cholesterol conjugates to give stem cells more breathing room and improving acetylcholine production. Centro has more affinity for the brain, DMAE more affinity for skin. You're going to need EDTA and some other things to get the mercury out of you at an accelerated pace.

 

As for family, sisters are generally share no more than about 50% of what make you who you are, and maybe significantly less (assuming you are male). In some cases they may only share mitochondrial DNA. If she doesn't look much like you, her pathology is likely to be different. Hashimotos by itself will cause fatigue, either from being on a constant calorie restriction diet to avoid becoming obese or becoming very obese. 

 

Also, if your parents have mercury in their teeth, that could affect breast feeding and be conferred to the child at an early age where it might persist in some tissues. Does she eat much fish? 

 

I would start by removing the mercury. It's only going to hamper your recovery. I've known people who started the mercury removal, got poisoned and convinced that removal was bad, and then finally got it removed a decade later and wished they hadn't convinced that it was a waste of money.

 

Oh, I had zinc confused with tin.

Edited by YOLF, 01 December 2017 - 12:41 AM.

[echopraxia]

Phase 1:

1. Take centrophenoxine, and perhaps desoxyn if they'll give it to you. I think Centro might even be Rx in Canada, if not, it's a supplement just across the border.

2. Get an allergy test (both food and environmental) and do the allergy immunotherapy (regular subQ shots of your allergens). Also learn the APG IV phylogeny system. Along with the allergy tests it will predict what you are allergic to. I'd actually do these tests first before changing anything as the immune system is more maleable than most think, you might have to do this twice. Stay away from ANY and ALL  things that give you a reaction, even if they are mild. The allergy test is largely incomplete and there are lots of molecular relatives to things that you are allergic to that will come and go as allergies depending on how regular your exposure to them or their molecular relatives are. Be ready to have a boring diet for a while, keep it simple and try not to experiment with new things.

3. Remove amalgam fillings if you have them.

4. Write everything down and keep track of how much you get through with your doctor, or just let them read it, that might save some time.

5. Get four (more) shots of the varicella vaccine (you'll have to look the schedule up, I don't remember it) for chicken pox, a French government organization of some kind iirc found that it this is effective for virtual elimination of herpes/cold sores. You might also want to get the new shingles shot, even if you've gotten over it. It confers novel immunity and may help. 

 

Do that and I'll tell you what to do next.

 

Thanks for this advice, and thanks everyone else for input as well. Sorry for disappearing from this thread for a while, things got bad and I just lost energy to try to improve things. Here's where I am now:

 

Symptom changes:

- Myclonic jerks are a lot more rare, only occasionally on falling asleep now

 

- Left side of arm still numb 8 months in

 

- Hands and feet get red and swollen and itchy/hot/painful still, especially after exercise. Have weird blood flow on right big toe -- its like the vein is always large, and blood returns to it maybe 10x faster than other parts of food which stay white for a 3-5 seconds, and the blood comes back from the inside out rather than the outside in. When this happens, going into a cold room helps

 

- Still tired all the time despite getting a new mattress, eliminating various allergens, etc. It likely did improve a bit when I threw out my mattress though - I was waking up with wet cough, itchyness, ridiculous congestion, and ridiculous fatigue. Tried cleaning it with alcohol, didn't help. Threw it out, got memory foam. Helped.

 

- Suddenly have lots of new allergies. I've never had a reaction as intense as the mattress. Also have randomly been getting (hives?) -- looks like skin gets red with white welts about the size of mosquito bites, really itchy. No clue on trigger.

 

- Sometimes the sides of my jaw(under ear, maybe 1inchx.75 inch area) - shooting pain, aching, crackling sensation

 

- Had one period of incredibly bad joint pain that I have no explanation for. Foot just suddenly felt like all the tendons/ligaments were shredded or something, couldn't walk without limping for a few hours. Then improved

 

- Randomly get red scaly patches on forearm/wrists, basically looks like someone bit me for shape, then looks like a burn or infection. High sensitivity, but not much itching or pain. 

 

- Have randomly gotten sensations(only once so far, for a period of 5 minutes) of having it feel like someone is jamming needles under my fingernails on left arm

 

- Walked to store in -10 weather(i'm from canada, gets to -45, so this isnt that bad). 15 minutes later i was slurring my words

 

Test Results, Pending Tests:

 

PTH ng/L (7-36)

SHBG 16nmol/l (10-55)

TSH 2.3mIU/L (.2-4)

Testosterone 12.3 nmol/l (8-29)

Prolactin 12ug/L (0-15)

Free T4 21.3 pmol/L(10-25)

Free T3 5.6 pmol/L(3.5-6.5)

Estradiol <19 pmol/L (0-160)

Progesterone <.2 nmol/L(0-.5)

ALP 107 U/L(30-130)

Albumin 47 g/L(33-48)

Calcium 2.54 mmol/L (2.10-2.55)

AM Cortisol 234 nmol/L(170-500)

BP 163/90 (followed up with ECG, unsure on results)

 

Pending Tests:

CBC, Kidney/Liver Function Tests, Potassium, Calcium, Magnesium, H Pylori, FT4, Hba1c, Urea, ESR

 

Medication/Supplementation Changes:

1. I no longer take any OTC medications that aren't hormones -- no more dexedrine, etc. This has been for a few months

2. I increased testosterone dose from 100mg/wk to 200mg/wk after the 12.3 result. I'd like it in top of range.

3. I started taking Centrophenoxine, and I've been working on slowly integrating more nootropics/supplements. My current stack is

 

Current Stack:

General Health:

Centrophenoxine -- 500mg, 4x/day

Alpha-GPC Choline -- 300mg, 2x/day

Sulbutiamine -- 400mg, 1x/day

Ashwagandha -- 300-600mg, 2-3x/day(experimenting with dosage and frequency)

Bacopa Monieri -- 300mg, 1x/day

D3 - 5000iu - Morning

B100 Exact Complex(100 B1, B2, Niacin, B6, Pantothenic, Choline Bitarate, Insolitol, B12, Biotin; 1mg Folic Acid) - Morning

B12 Sublingual - 2000mcg - Morning, Sometimes redose mid-day

R-ALA - 250mg - Morning

CoQ10 - 100mg - Morning

Potassium - 500mg Caps, 5-10/day (ketogenic diet, so extra potassium required)

MCT Oil - 3-4tbsp/day

Flax Seed - 60g/day

Creatine - 5g/day

Glutamine - 5g/day

Homemade Bone Broth

Magnesium - 450mg Pre-Bed

Zinc - 50mg Pre-Bed

 

Tolerating Life:

Phenibut - 500mg, 2-3x/day [I realize this is risky]

Tianeptine Sulfate - 25mg, 2x/day

Coffee - As Needed[2-5 cups/day]

Black Tea - As Needed [2-4 bags/day]

Green Tea - As Needed [1-2 bags/day]

Nicotine - As Needed [40mg vaped? I know this is bad, but it helps a lot with pushing through this until I can get everything lined up]

 

Currently Testing:

Piracetam, 1600mg-5000mg, 1-3x/day. Can't tell if it's beneficial or not. I notice if I take too much, I get more shocking pains, and if I take more choline, that stops. This leads me to suspect that part of my problems are choline related?

 

Soon Adding

Probiotic/Prebiotic Regimine: I want to make sure my gut health is as solid as it can be. I've used antibiotics 10+ times in the last 8 years, and have tons of gut issues. VSL3, some Prebiotic, Collagen, Digestive Enzyme

Modafinil - 200mg/day, AM - I've tried this before, it helps a ton with fatigue, mood, mental clarity, and ADD type symptoms. I'd like to cut coffee, and this seems like a good way to do that while also helping some of my cognitive issues.

ALCAR, .5 - 1.5g in morning

Longvida Curcumin

 

Considering Experimenting With in Mid-Future(any thoughts on these are appreciated)

NAC - 600mg/day (I'm unsure on this one, I haven't been able to research it enough, but it seems like it could help with a lot of my problems?)

K1/K2

Pantothenic Acid

PQQ

Trimethylglycine

Methyltetrahydrofolate

P-5-P

Insolitol

Forskolin

ECGC

Sulforaphane

Vitamin C(I think I cover this with food, but worth testing more)

H. Einaceus

Baclofen

Memantine

HCG

Pregnenolone

DHEA

 

 

Current Non-Medical Interventions

Daily Excercise in the morning, can get up to 15-20 minutes without shooting pain now

Daily meditation in the morning -- currently doing 5 minutes, will be slowly increasing

Daily DnB in the morning, 15 minutes

Ketogenic diet, lots of vegetables, lots of healthy fats. 

 

 

Current future plans:

I'm hoping the gut rehabilitation will help. I think modafinil will help a lot with pushing through all of this. I'm not too stoked about taking phenibut, but it helps a lot. As soon as I can afford it I'm going to take all of the allergy/intolerance tests -- as far as I can tell right now, this costs a bit of money. Again when I can afford it, I'm going to get a full sleep study, since the take-home shows mild apnea. I'm also going to get a 23andme test within the next year. I'm going to try to get a referral to both an endocrinologist and a rheumatologist. I suspect HCG/Pregnenolone/DHEA will help me a lot, but I need to see an endocrinologist for that. I'm keeping journal notes for new symptoms and reocurring symptoms, tracking days that I don't feel good enough to do stuff, taking pictures/videos of symptoms that can be seen. 

 

 

I'm open to any input, thoughts, or advice from anyone here. I'm really hoping that this all resolves and the knowledge gained from the experience can help other people. What I know right now is that the medical system is woefully inept at dealing with actual issues. 

Edited by echopraxia, 04 February 2018 - 01:21 AM.

[dubbyah]

You have no idea what you're in for taking phenibut 3x a day. Please stop that. No point in anyone offering you much advice if you're going to abuse substances like that. It's like getting yourself hooked on Xanax, some say the withdrawal is even worse. You're really going to be in for a world of pain the longer you do it. Phenibut is only helping you in the same way oxycodone and GHB would, it's not a sustainable substance to take in any way whatsoever, especially if you're in compromised health. Only other things that stood out are Alpha GPC and Centrophenoxine are both pretty strong choline sources and it's often recommended not to combine them. Ashwaganda and Bacopa can also both cause weird hard to predict symptoms, I'd probably remove them for honing down what the problem is unless you really love them. As for your issue, I think it's complex and polycausal enough that you're going to need to see someone good in person, even if you have to drive a few hours and/or pay out of pocket to see them. I'd start doing serious research on specialists. Losing faith in "the medical establishment" doesn't make much sense because it's just a word we use to refer to tens of thousands of different people all with different knowledge and treatment approaches. I do agree that 95% of MDs suck and are awful at dealing with anything other than textbook, easy issues, so I hear you on that. But there are good ones out there, just require travel usually. I'd also consider seeing a traditional chinese medicine specialist, ideally from China, if you can find one near you, even if you're skeptical of such modalities, just as an experiment to see what happens. Don't give up, find someone good in person and just keep reading and trying things out online. Also exercise outdoors as much as possible, but that goes without saying. Get the ebook of "Spark" if you want to know why on that. Also, research elimination diets and try doing one as strictly as possible in a detailed way. What's your daily food intake look like?

Edited by dubbyah, 05 February 2018 - 05:28 AM.

[echopraxia]

You have no idea what you're in for taking phenibut 3x a day. Please stop that. No point in anyone offering you much advice if you're going to abuse substances like that. It's like getting yourself hooked on Xanax, some say the withdrawal is even worse. You're really going to be in for a world of pain the longer you do it. Phenibut is only helping you in the same way oxycodone and GHB would, it's not a sustainable substance to take in any way whatsoever, especially if you're in compromised health. Only other things that stood out are Alpha GPC and Centrophenoxine are both pretty strong choline sources and it's often recommended not to combine them. Ashwaganda and Bacopa can also both cause weird hard to predict symptoms, I'd probably remove them for honing down what the problem is unless you really love them. As for your issue, I think it's complex and polycausal enough that you're going to need to see someone good in person, even if you have to drive a few hours and/or pay out of pocket to see them. I'd start doing serious research on specialists. Losing faith in "the medical establishment" doesn't make much sense because it's just a word we use to refer to tens of thousands of different people all with different knowledge and treatment approaches. I do agree that 95% of MDs suck and are awful at dealing with anything other than textbook, easy issues, so I hear you on that. But there are good ones out there, just require travel usually. I'd also consider seeing a traditional chinese medicine specialist, ideally from China, if you can find one near you, even if you're skeptical of such modalities, just as an experiment to see what happens. Don't give up, find someone good in person and just keep reading and trying things out online. Also exercise outdoors as much as possible, but that goes without saying. Get the ebook of "Spark" if you want to know why on that. Also, research elimination diets and try doing one as strictly as possible in a detailed way. What's your daily food intake look like?

 

Thanks for the detailed response.

 

Isn't 500mg 3x/day the recommended way of taking it, from the drug pamphlets in Russia? That being said, I've heard this enough now that I'll likely just drop it, even though it's helping push through a lot. Will just save it for the worst days I guess.

 

Ashwaganda noticably calms me, I'm guessing I could even replace phenibut with it if I raised the dose. Bacopa I just added, so I could cut that for now. I'm trying to add things slowly so I don't get confused as to what's causing what, but lately things have been so bad that I'm kind of just scrambling to stay functional.

 

I understand what you're saying on the medical system. I'm going to try to convince my doctor to get me some referrals to endocrinologists and rheumatologists. If she doesn't, I might try talking to a doctor I saw to get my Autism diagnosis -- had a few hour talk with him, and he seemed pretty reasonable compared to other doctors. Might be able to get referred to some specialists if he sees that I haven't been able to get help from other doctors. And if all fails, I'm saving to do Craig Venters Health Nucleus, hopefully at the end of the year. I just want some relief in the meantime. 

 

I'll look into a traditional specialist. At this point I'll basically try anything.

 

I've done elimination diets a couple times, although I likely haven't been as detailed as I could have been(e.g. : haven't really checked for mast cell issues). Right now my daily food intake is something like:

 

3-4 TBSP MCT Oil

60g Flax Seed

3-6 Eggs

8-16oz Beef / Pork / Fish

4-8 TBSP Butter

100-150g Kale

Misc other veggies: Brocolli, Cucumber, Bell Peppers, Onions, Zuchini

 

Normally it's a lot more regimental, but been staying with family for the last month(and the next month), hence the fluctuation in some of the numbers. 

 

Some things I know for sure:

 

I respond terribly to milk products that aren't heavy cream or heavy cheese or yogurt

My energy levels and mood are WAY more consistent on a keto diet

My symptoms get WAY worse if I ever eat a high carb meal(have gone on/off keto a few times in the last year, now just staying on...last time I ate high carb I had my vision go white, feet get numb, etc)

I get either sleepy, irritable, depressed, or a stomach ache when I eat bread, rice, pasta, potatoes. Yams seem relatively fine, but when yams are the only carb I can eat without feeling awful I'd rather just do keto. I react less bad to white rice than I do to brown rice. 

Even though I eat keto, I still essentially always feel worse after eating. Basically for the last 8 years I've ALWAYS felt worse after eating -- whether it's tired, anxious, depressed, stomach ache, etc. Just always worse. Considering doing a long fast, tbh. 

 

 

Thanks again for the advice.