Help with strange symptoms!

croboy17

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Hello from Croatia.

In june 2016 I fell ill at 21 years old. After bodybuilding in my teen years and feeling great most of my life. I started to feel awful. I was working on a construction site when a bunch of symptoms hit me like a truck. I felt like I had some kind of androgen resitance. Symptoms include: numb genitals, loss of morning, and spontaneous erections, 0 libido, empty muscles, low semen volume and force, tight scrotum, change in body odor, stress incontience, cold penis. I also have dry eyes, and had a white rash on my face (tinea versicolor) it happened same time I crashed. Also had a white wart on my glans. As well as balanitis. I have seen various doctors with no diagnosis which led me to the internet and the discovery of something called Post Finasterde Syndrome. I have never taken these drugs and am in disbelief at what has happened? Can someone please give me some insight on how to fix myself?!


Total T is in the 700s.
E2 12 (11-35)
DHT 176 (350-850)
Liver enzymes, cholesterol always come back high.
Dhea-s elevated as well.

stool test showed : blastocystis hominis (parasite)
Calprotectin 128 (0-75)
IgE 790.9 (0-100)
 
HIT4ME

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What does your CBC look like? RBC, MCH, MCV, WBC, Monocytes, leucocytes, etc.?

Have you ever used any bodybuilding supplements?
 

croboy17

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Hi, thanks for the quick reply.
I have used creatine as well as protein powder in the past. That is alll.


July 9th 2018

Erythrocytes 5.60 (4.34-5.72)
Hemogloblin 160 (138-175)
Hematokrit 0.477 (0.415-0.530)
MCV: 85.1 (83-97.2)
MCH 28.6 (27.4-33.9)
MCHC 336 (320-345)
RDW 14.2 (9-15.0)
Trombociti 263 (158-424)
MPV 8.9 (6.8-10.4)
Leukociti 5.4 (3.4-9.7)

Granulociti 2.80 (2.06-6.49)
Granulociti rel 53 (44-72)
Limfociti 2.30 (1.19-3.35)
limfociti rel 43 (20-46)

Billirubin 21.1 (3-20) *********************************************
Glucose 4.1 (4.2-6.0) ****************************************************
Creatine 86 (64-104)
Urati 507 (182-403) ********************************************************
ALT 21 (12-48)
ALP 85 (60-142)
AST 23 (11-38)
GGT 28 (11-55)
Kalij 4.80 (3.90-5.10)
Natriji 140 (137-146)
Kolesterol 7.1 (0-5.0) ******************************************
HDL 1.86 (>1.0)
LDL 4.90 ( <3.0) *************************************************
Triglycerides 0.7 (0-1.7)
 

croboy17

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March 14th 2018


Erythrocytes 5.77 (4.34-5.72) ******************************
Hemogloblin 164 (138-175)
Hematokrit 0.485 (0.415-0.530)
MCV: 84.1 (83-97.2)
MCH 28.4 (27.4-33.9)
MCHC 337 (320-345)
RDW 14.2 (9-15.0)
Trombociti 253 (158-424)
MPV 8.7 (6.8-10.4)
Leukociti 8.3 (3.4-9.7)

Granulociti 4.00 (2.06-6.49)
Granulociti rel 49 (44-72)
Limfociti 3.70 (1.19-3.35) ***************
limfociti rel 44 (20-46)

Billirubin 12.0 (3-20)
Glucose 5.7 (4.2-6.0)
Creatine 94(64-104)

ALT 62 (12-48) *********************************
ALP 93 (60-142)
AST 32 (11-38)
GGT 78 (11-55) ******************************
Kalij 4.70 (3.90-5.10)
Natriji 144 (137-146)
 

croboy17

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February 25th 2019


Erythrocytes 5.56 (4.34-5.72)
Hemogloblin 157 (138-175)
Hematokrit 0.467 (0.415-0.530)
MCV: 84 (83-97.2)
MCH 28.3 (27.4-33.9)
MCHC 336 (320-345)
RDW 12.8 (9-15.0)
Trombociti 335 (158-424)
MPV 8.7 (6.8-10.4)
Leukociti 8.5 (3.4-9.7) ******************************************************

Granulociti 5.90 (2.06-6.49)
Granulociti rel 70 (44-72)
Limfociti 2.00 (1.19-3.35)
limfociti rel 24 (20-46)


Glucose 5.4 (4.2-6.0)
Creatine 118 (64-104) **********************************************

ALT 57 (12-48) **********************************

AST 36 (11-38)
GGT 64 (11-55)******************************************
 
HIT4ME

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How often do you drink alcohol?

Do you take any prescription medications?
 
Smont

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As far as lack of libido and feeling weak, your dht is super low and estrogen is kinda low. I think both can be the cause of those problems. But other then that I don't see anything that makes sense of the other symptoms. These being low, especially dht during puberty can lead you down a road of problems as you get older. Low dht actually delays puberty or can prevent some men from fully going through puberty. That would cause the lack of muscle development and hair growth that usually comes at that time.
 

croboy17

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no drugs, no medications currently..>
I went through puberty normal.. and was able to put on muscle like few could.... Felt really androgenic 18/19/20/21 years old....
Randomly crashed and its exactly like Post finasteride syndrome. A doctor over youtube told me it sounds like an immune system issue and no dht in the world would fix me until I adress the immune system.

"5a doesnt get impacted in isolation but as a danger signal. Fix the danger signal fix the problem"

Also reccomended Monolaurin and testing for viruses such as ebv, hsv.
 
Smont

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I can't really give any input on that, but I would like to address"Dr. on YouTube" YouTube is mostly regular people pretending to be experts so take YouTube advice with caution. Could it be the problem, maybe, idk. Maybe you should bring that up with your Dr. For testing. But it's not something i know or have heard much about in relation to the symptoms you described. It does sound very strange, hope you get it figured out
 

croboy17

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https://anabolicminds.com/community/threads/chronic-fatigue-question-detailed-labs-posted.216977/

"After working with many PFS case, the drug was often a catalyst for immune system dysfunction that causes a snow ball effect As a result this causes dormant infections of Strep, lyme, co-infections, mold, EBV coxsackie, parvo, HSV 1,2 HVV6, etc to be come active. Then a doctor tell you when your IGG is past infections, but fails to see the reality its an active infections
Need to look at the total history and labs to get the clinical picture. Too many people are looking at one factor when there are often multiple.
This is why they are not getting better and making matters worse from listen to the nonsense and misinformation they read on line. "


posted by @THEmatrix
 

croboy17

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I moved to Croatia, and I had 2 doctors over here that basically are very conservative in regards to testing.. They basically think I am making this all up. That is why I came here for some help, especially after I saw that post about immune issues by matrix.
 
HIT4ME

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no drugs, no medications currently..>
I went through puberty normal.. and was able to put on muscle like few could.... Felt really androgenic 18/19/20/21 years old....
Randomly crashed and its exactly like Post finasteride syndrome. A doctor over youtube told me it sounds like an immune system issue and no dht in the world would fix me until I adress the immune system.

"5a doesnt get impacted in isolation but as a danger signal. Fix the danger signal fix the problem"

Also reccomended Monolaurin and testing for viruses such as ebv, hsv.
So, I admit, it is very, very difficult to diagnose anyone over the internet. You actually have blood work, which is awesome and I applaud your help with that.

Having said all of that - diagnosing something based on symptoms is really a slippery slope. The issue is that a symptom could be indicative of a dozen different diseases or none at all, and often symptoms cluster together. Or symptoms could be related to multiple causes, not part of a single cause.

Looking at the blood work you posted you look to be pretty healthy in most regards. One of the first things I was wondering was about anemia or infections and those items are pretty much ruled out with your bloodwork. Your mono theory may match the symptoms, but you have ruled that out with the bloodwork provided.

Were you on any prescription drugs at or within 6 months of taking any of these bloods?

I'm going to ask again, since you didn't directly answer - what is your alcohol consumption like?

Finally, did you get any iron/ferritin levels checked when you had bloodwork done?
 

croboy17

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no prescription drugs within 6 months of taking those drugs. I drink a beer or two maybe every 4-5 months ;P.

Iron and ferritin are all within range. (upper side of range)
 
HIT4ME

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no prescription drugs within 6 months of taking those drugs. I drink a beer or two maybe every 4-5 months ;P.

Iron and ferritin are all within range. (upper side of range)
Ok, so, what I'm seeing in that blood work really made me wonder about some kind of alcohol problem - but it doesn't fit entirely. If you had an elevated MCV and a slightly higher GGT I would probably be very suspicious of an alcohol problem, but the MCV is on the low side of the range and within range so I wasn't sure. The elevated uric acid also made me question this.

The pattern would have made me think, first, that you may have a situation where you don't drink that often, but once in a while you go out and maybe overdo it a little. Either that or you don't drink very much, but do it constantly. Either way, it would appear to be early damage if that was the case - but given you don't seem to drink regularly or heavily during any infrequent times, I'm going to go in another direction.

Iron and Ferritin in the upper end of the range. Elevated GGT. Elevated Uric Acid - I'm wondering about iron overload and hemochromatosis.

I have more to think about and research...but those are my thoughts at the moment.
 

croboy17

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Amonia 20.1 (14.7-55.3)

Iron 19.6 (11-32)
TIBC 59.9 (49-72)
UIBC 40.3 (25-54)
CRP 1.10 (<5.0)

Bile Acids 1.88 (<10.0)

Copper 839 (560-1110)
Zinc 20.9 (9.2-18.4)
Ceruloplasmin 165 (150-300)
 

croboy17

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I should note that before crashing I completely changed my diet. I was eating black coffee, cucumbers, watermelon, bell peppers, onion, garlic, eggs , and the odd piece of meat. I completely stopped eating packaged food.
 

croboy17

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Vitamin A overdose? post accutane (retinol) has exact symptoms too with the loss of libido, numb genitals and dry eyes.
 
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Amonia 20.1 (14.7-55.3)

Iron 19.6 (11-32)
TIBC 59.9 (49-72)
UIBC 40.3 (25-54)
CRP 1.10 (<5.0)

Bile Acids 1.88 (<10.0)

Copper 839 (560-1110)
Zinc 20.9 (9.2-18.4)
Ceruloplasmin 165 (150-300)
OK, so iron is not at all at the high end of the range.

Vitamin A overdose? post accutane (retinol) has exact symptoms too with the loss of libido, numb genitals and dry eyes.
Did you take Accutane? Were you supplementing with high doses of vitamin A? Looking at the diet you laid out it wouldn't be likely you are ODing on Vitamin A unless you are taking something.
 

croboy17

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no never took any accutane... it seems like im just dealing with a bunch of auto immune conditions...

Dry eyes (sjorgens)
joint pain in the fingers, balanitis circinata, red eyes (reactive arthritis)
 
bad rad

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no never took any accutane... it seems like im just dealing with a bunch of auto immune conditions...

Dry eyes (sjorgens)
joint pain in the fingers, balanitis circinata, red eyes (reactive arthritis)
Is this a confirmed diagnosis? This is an autoimmune disease and would explain some of your problems due to inflammation.
 

croboy17

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no, I have never been diagnosed... I visited a immunologist here in Croatia last month. He bascially wanted me to do 40 different tests (adding up to 2000$) So I googled them to see which were justified.
Sjorgens I dont believe I have actually, but im sure I have reactive arthritis

I picked IgE, Secretory IgA, Calprotectin, and a stool test.


IgE 790.9 (0-100)
Calptrotectin 128 (0-75)
Stool Test: Blastocystis hominis present (parasite)
 
bad rad

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My Mom has Sjorgen's Syndrome and it rarely affects men. Plus it tends to be accompanied by other autoimmune disorders. Parasites will lead to a host of problems and misdiagnoses.
 

croboy17

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me and another fellow developed "post finasteride syndrome" symptoms after going on low carb diets.
I found information that low carb diets can cause mucus deficiency in the body. We know that the intestinal barrier is mucosal so I am wondering if this is our issue? Basically mucus deficiency caused us to be susceptible to viruses, bacteria, yeast , fungus , mold etc..?!
 
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me and another fellow developed "post finasteride syndrome" symptoms after going on low carb diets.
I found information that low carb diets can cause mucus deficiency in the body. We know that the intestinal barrier is mucosal so I am wondering if this is our issue? Basically mucus deficiency caused us to be susceptible to viruses, bacteria, yeast , fungus , mold etc..?!
I've never in my life heard of that happening to someone from lowering carbs. There's probably a 1 in a million chance that is the cause
 

croboy17

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Another doctor I contacted via instagram wanted 333$ for a 1 hour consultation. He is quite popular on youtube and sounds very intelligent. I begged him to help me for free since I am quite desperate even for just 5 minutes of help.

He agreed to listen to my symptoms, and reviewed my blood tests. His response?


He believes im suffering from an immune system issue that is being driven from a viral infection. My Wbc are high, rbc high, lymphocytes high, liver enzymes high etc....

I will be doing a better blood test this week where I can see

Neutrophils
Basophils
Eosonophils
Monocytes
 
HIT4ME

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Another doctor I contacted via instagram wanted 333$ for a 1 hour consultation. He is quite popular on youtube and sounds very intelligent. I begged him to help me for free since I am quite desperate even for just 5 minutes of help.

He agreed to listen to my symptoms, and reviewed my blood tests. His response?


He believes im suffering from an immune system issue that is being driven from a viral infection. My Wbc are high, rbc high, lymphocytes high, liver enzymes high etc....

I will be doing a better blood test this week where I can see

Neutrophils
Basophils
Eosonophils
Monocytes
Yeah, I am glad you didn't pay for that.

If you gave him the same bloodwork you showed above - your RBC's were only very slightly high once and are within range since.

Same for your WBC's - but they are all within range and don't indicate very strongly any infection. I was wondering about Lyme for a bit, but not sure there's any evidence.

It may be a viral infection...I am going to PM you an idea.
 

LaserGoPewPew

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Another doctor I contacted via instagram wanted 333$ for a 1 hour consultation. He is quite popular on youtube and sounds very intelligent. I begged him to help me for free since I am quite desperate even for just 5 minutes of help.

He agreed to listen to my symptoms, and reviewed my blood tests. His response?


He believes im suffering from an immune system issue that is being driven from a viral infection. My Wbc are high, rbc high, lymphocytes high, liver enzymes high etc....

I will be doing a better blood test this week where I can see

Neutrophils
Basophils
Eosonophils
Monocytes
did you figure this out
 

croboy17

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hi @LaserGoPewPew


I believe what my problems are connected to the immune system, just like many post finasteride/accutane users. My belief is that we have/had immune system dysfunction that caused our immune systems to get out of balance. By this I mean that th1/th2 are no longer in balance, but we have th2 dominance now, and th1 supression. I have been reading on this forum as well and @The Matrix seems very knowledgable about this. I believe in my case it was caused by overuse of hydrocortisone (steroid cortisol) ointment for a fungal rash on my thighs buttocks and biceps.

I also have elevated IgE which seems to be highly linked with Th2 side of immune system!
 

croboy17

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I basically lost my libido , got fatigue, testicles shrunk at least 50% all over night. Can anyone give me a direction to follow PLEASE I need help. This can not be normal for a then 21 year old to just fall ill overnight. I haven't had a spontaneous erection in 4 years. Morning wood happens maybe once a week but only 60% and goes down very quickly.
 

Datsun280z

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Earlier you mentioned parasites. Have you been retested or taken something to clean that up ?
 

croboy17

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yes , I was given Vermox.. it did seem to help with the bloating, burping, etc..
However I still have numb genitals, shrunken testicles, complete loss of libido, fatigue, cant put on muscle, and stress incontinence.
 

saderboy80

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yes , I was given Vermox.. it did seem to help with the bloating, burping, etc..
However I still have numb genitals, shrunken testicles, complete loss of libido, fatigue, cant put on muscle, and stress incontinence.
The only advice I can give you, that the more experienced users havent said. Is that you should consult with your doctor about having genetic testing (but it’s not cheap). Also get a lumbar puncture to test your cerebrospinal fluid.
 

croboy17

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hi @saderboy80

yes the doctor I found on instagram said it sounded like it was all being caused by a viral infection. I found a guy on this forum with same symptoms however his pain is in the left groin. He also has numb genitals, shrunken testicles, loss of vascularity on arms, cant put on muscle, basically all happened over night...

I was under a lot of stress when this all happened so viral infection/immune dysfunction makes sense. The doctor on instagram recomended testing for ebv, hsv1/2 and other viruses and doing genetic testing as well. I did the ebv igg +igm both were negative.
 

croboy17

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what would the genetic testing show? that could help me? im a bit confused with this
 

saderboy80

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Dang man you have me stumped! I wish I could be more helpful. I’ll keep looking, and do my best to help.

As of now I’m thinking auto immune disorder, complications with the HPG axis, lack of blood flow to the testes, pinched dorsal pudundal nerve

What was the order in which your symptoms appeared?
 

croboy17

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brain fog, loss of muscle mass, loss of strength, shrunken testicles, numb genitals, loss of libido, numb orgasm,
then a bit after I developed pain in right groin, right testicle, right kidney. Leaking urine.
 

saderboy80

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Maybe get an MRI or CT scan of your brain. Looking for tumors on your hypothalamus and pituitary gland.
 
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If you are pre-disposed to an auto-immune disorder or not.
What's the accuracy of genetic testing as of recently? I know a year or 2 ago they were giving false positives 30-50% of the time. If you tested a person multiple times the results were different.
 
HIT4ME

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Looking back at this- your DHT is low and that would give a lot of these symptoms in theory.

Can you create an exhaustive list of all of the supplements and drugs you are taking now, and also a list of everything you have taken since this started?
 
Smont

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Looking back at this- your DHT is low and that would give a lot of these symptoms in theory.

Can you create an exhaustive list of all of the supplements and drugs you are taking now, and also a list of everything you have taken since this started?
That makes a lot of sense, testosterone may be the main Male hormone but dht might play the biggest role in making you feel like a man. Sex drive, agression, confidence ect. Can all be negatively affected from low dht, I believe during puberty dht is more important then testosterone for going from a boy to a man. I was also wondering what drugs may be involved, mainly things like antidepressants or anxiety medications.
 
HIT4ME

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That makes a lot of sense, testosterone may be the main Male hormone but dht might play the biggest role in making you feel like a man. Sex drive, agression, confidence ect. Can all be negatively affected from low dht, I believe during puberty dht is more important then testosterone for going from a boy to a man. I was also wondering what drugs may be involved, mainly things like antidepressants or anxiety medications.
Yeah - supplements and drugs can be often overlooked. I mean, I have supplements I have just taken daily, like large doses of Vitamin C for decades...and if a Dr. asks me I may list off the stuff I'm taking and leave that out because I don't even think about it.

Some supplements and drugs have DHT lowering capabilities too..

I mean, he pointed out that he thinks it is like finasteride syndrome even though he's never taken finasteride from the beginning - so I should have seen the low DHT from the beginning but I think I may have misread it.
 
HIT4ME

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OP - in addition, can you confirm (I'm reading through the post since I hadn't looked in a while) - you don't drink and you have never used any hormonal products/supplements/drugs?

Are you obese or have you ever been obese?
 

croboy17

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OP - in addition, can you confirm (I'm reading through the post since I hadn't looked in a while) - you don't drink and you have never used any hormonal products/supplements/drugs?

Are you obese or have you ever been obese?
Fit as a fly, I would lift at the gym 4-5 times a week, fit soccer player, built like a football player.
Never took finasteride/ssri/accutane.
Had rash on my thighs, buttocks, biceps since I was 10. Given hydrocortisone cream (immunosupressant) for it. Cream helped a bit but in 10 years it never eradicated the rash completely. I used it on and off through out the last 10 years. Basically in 2016 at age 22 overnight my testicles shurnk, genitals went numb, no more erections (morning/spontaneous) dry eyes, fatigue and the rest..
 
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Fit as a fly, I would lift at the gym 4-5 times a week, fit soccer player, built like a football player.
Never took finasteride/ssri/accutane.
Had rash on my thighs, buttocks, biceps since I was 10. Given hydrocortisone cream (immunosupressant) for it. Cream helped a bit but in 10 years it never eradicated the rash completely. I used it on and off through out the last 10 years. Basically in 2016 at age 22 overnight my testicles shurnk, genitals went numb, no more erections (morning/spontaneous) dry eyes, fatigue and the rest..
You have been living with this for 4 years!
 

saderboy80

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What's the accuracy of genetic testing as of recently? I know a year or 2 ago they were giving false positives 30-50% of the time. If you tested a person multiple times the results were different.
Depends what you are testing. If you test genetically for genealogy then the results are only 40% at best. Such as ancestry.com and 23&me.com.

However, pharmacogenetic testing/metabolism testing and testing for “medical issues” the outcomes are very high. Up to 94% sensitivity.

Personally I’ve had pharmacogenetic testing, metabolic gene testing and testing for medical conditions. All have been very accurate.


“Gene sight” is a reputable company for pharmacogenetic and metabolic testing.
 

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