Pyroluria

[Guest [pe...]]

I have recently been tested and diagnosed with pyroluria.  I am suffering terribly at 13 months out with severe mental anguish that is with me 24/7 with no ability to distract no matter what I do. 

 

I am wondering if I should treat this pyroluria.  I had chronic anxiety before benzos and since my short term use it has reached an unbearable level. 

 

Looking for input from others.

[[So...]]

Hey, I'm no doctor, but geez it may be worth a shot! I have seen your suffering on here and have felt really bad for you.

I did not have the looping thoughts with benzo W/D...all of mine is physical, like couldn't walk and horrible neurological stuff.....BUT, I KNOW the agony and torture of the non stop thoughts, songs, images, phrases, words, etc. Because I had it years ago for a brief time during post partum from 2nd child. And I had it as bad as you have desceibed. So I have felt bad for you.

Honestly, don't you think it might be worth a try since they usually treat pyroluria with B6 and zinc and other supps? At least it's not drugs? And could be the original source of anxiety, that is now SUPER sensitive from benzo wd?

IDK, you should just talk to your doc since it's an actual lab diagnosis, and see what the risks/ benefits are.

Best of luck!!

 

And P.S. people always try and judge what's worse the mental or the physical....I say they are both the same, human suffering is human suffering.

[[or...]]

I am wondering if I should treat this pyroluria.

 

Why would you (in conjunction with the doc that diagnosed it) not treat it? It seems like a condition easily treatable with B6 and other supps.

 

Just wondering.

 

Katz

[[de...]]

https://drbillsukala.com/pyroluria-disease-myth/

 

 

[[or...]]

Aaaahhh, thanks, deadwood. I did a little sleuthing. I get it now. Another mystery condition with a "miracle cure". How sad.

.

A search of PubMed and other medical databases turns up very few results on the term “pyroluria” as a clinical entity.

 

Katz

[Guest [pe...]]

https://drbillsukala.com/pyroluria-disease-myth/

 

Benzo withdrawal isn't recognized so we could say that's a myth too. I've joined pyroluria support groups and they say it's very real and treating it changed their lives

[[So...]]

Same

[Guest [Bn...]]

Yep another mystery diagnosis...

[[de...]]

Yes, it's dead sad Katz, and all.

 

I am still amazed at the way people will scare monger and make people afraid just to turn a buck. 

 

Dee

[[Ka...]]

I have recently been tested and diagnosed with pyroluria.  I am suffering terribly at 13 months out with severe mental anguish that is with me 24/7 with no ability to distract no matter what I do. 

 

I am wondering if I should treat this pyroluria.  I had chronic anxiety before benzos and since my short term use it has reached an unbearable level. 

 

Looking for input from others.

hi perth, i'm so sorry about this new dx, i'm sure it's very discouraging for you, and i'm no expert of course on pyroluria, but I do wonder about it, because benzos caused me to have severe anemia ( which of course are also problems with Hgb) as well as elevated my platelets badly, and really messed up with my blood for a long time there, i'm almost 22 months off, and only for the last 6 months have my blood tests been coming back good again, so i'm seeing some progress. it does make me wonder if it can potentially mess with your Hgb and cause you to have more pyrroles in your blood on your tests too, because they are such evil drugs, just a conjecture. The tx recommended are mostly supplements, so do take them of course, but be checking your blood every so often, just to see if you're getting better just in case too?

[[Me...]]

I’m wondering if this is benzo withdrawal?

I can’t even tell you how many diagnoses I’ve been given since I CT’d.

They’ve all been withdrawal symptoms disguised as other stuff

But I doubt vitamins would hurt

[[Aj...]]

Megan’s - can you list the wrong diagnoses you have been given?

[[de...]]

Perth, my post on Pyroluria was intended as something to consider.  Additional information, nothing more.  I hope you find solution. 

[Guest [pe...]]

I've had GAD for many years so I went to a functional doctor to try and find the root cause because my anxiety is not related to any trauma or life stressors or anything.

 

The pyroluria is interesting because I fit many of the symptoms even before the whole benzo withdrawal. I've spoken with others who said they were a mess for years and ending up treating the pyroulria and are doing so much better.

 

 

[[Ch...]]

There are certainly a wide range of symptoms. How is it diagnosed? Are there tests or is it determined by fitting the symptoms?

 

Abdominal pain

Abnormal body fat distribution

Acne

Allergies

Amnesia spells

Anger – explosive

Anxiety, nervous exhaustion

Argumentative and/or angry demeanor, mood swings

Cloudy thinking, poor memory

Cold hands and feet

Constipation

Creaking in joints

Delayed puberty

Delusions

Depression

Difficulty remembering dreams

Dramatic

Drug and alcohol intolerance

Dyslexia

Early greying of hair

Eczema

Elevated eosinophils

Emotionally unstable

Fatigue

Fluid retention

Frequent colds, fevers, chills, ear infections as a child

Hallucinations

Hyper-pigmentation of the skin

Hyperactivity

Hypersensitivity to loud noises

Hypoglycaemia

Inability to think clearly

Insomnia

Intolerance to alcohol

Intolerance to drugs

Intolerance to some protein foods

Joint pain

Knee pain

Lack of hair on head, eyebrows, and eyelashes areas

Lack of regular menstrual cycle

Loss of appetite

Low libido

Low tolerance to stress

Male impotence

Migraines

Mood swings

Morning nausea

Motion sickness

Much higher capability in the evening than mornings

Nervous exhaustion

Nervousness

Overwhelmed in stressful situations

Pale skin, poor tanning, sun burn easily

Panic attacks

Paranoia

Pessimism

Poor morning appetite, tendency to skip breakfast

Preference for spicy or heavily flavoured foods

Prone to stitches when running now or as a child

Reading difficulties

Seizures Sensitivity to bright light

Sensitivity to smells

Severe inner tension

Significant growth after 16 years of age

Skin rashes

Social withdrawal

Substance abuse

Temper tantrums

Tendency towards iron deficient anaemia

Tingling in the arms and legs

Tremors

Unusual breath and body odour

[Guest [pe...]]

There are certainly a wide range of symptoms. How is it diagnosed? Are there tests or is it determined by fitting the symptoms?

 

Abdominal pain

Abnormal body fat distribution

Acne

Allergies

Amnesia spells

Anger – explosive

Anxiety, nervous exhaustion

Argumentative and/or angry demeanor, mood swings

Cloudy thinking, poor memory

Cold hands and feet

Constipation

Creaking in joints

Delayed puberty

Delusions

Depression

Difficulty remembering dreams

Dramatic

Drug and alcohol intolerance

Dyslexia

Early greying of hair

Eczema

Elevated eosinophils

Emotionally unstable

Fatigue

Fluid retention

Frequent colds, fevers, chills, ear infections as a child

Hallucinations

Hyper-pigmentation of the skin

Hyperactivity

Hypersensitivity to loud noises

Hypoglycaemia

Inability to think clearly

Insomnia

Intolerance to alcohol

Intolerance to drugs

Intolerance to some protein foods

Joint pain

Knee pain

Lack of hair on head, eyebrows, and eyelashes areas

Lack of regular menstrual cycle

Loss of appetite

Low libido

Low tolerance to stress

Male impotence

Migraines

Mood swings

Morning nausea

Motion sickness

Much higher capability in the evening than mornings

Nervous exhaustion

Nervousness

Overwhelmed in stressful situations

Pale skin, poor tanning, sun burn easily

Panic attacks

Paranoia

Pessimism

Poor morning appetite, tendency to skip breakfast

Preference for spicy or heavily flavoured foods

Prone to stitches when running now or as a child

Reading difficulties

Seizures Sensitivity to bright light

Sensitivity to smells

Severe inner tension

Significant growth after 16 years of age

Skin rashes

Social withdrawal

Substance abuse

Temper tantrums

Tendency towards iron deficient anaemia

Tingling in the arms and legs

Tremors

Unusual breath and body odour

 

It's diagnosed through a urine test