Porphryria Makes You Vomit and Die

[themainman2008]

I have epp but I don't vomit for more than 2 days within a 5 year gap, I feel sick most of the time get pains in my liver and kidneys area but I still wake up the next day(think its my mattress) ..I'm just waiting for the that hand to come down and touch my soul and take me away

[KioruSan]

Wow. This is plain horrible. I feel very sorry for you. This disease is one of the worst I've ever heard of...

[drumheadcircle]

Try little cubes of raw angus-swallowed whole. That and all corn, and beans.

[nagashud]

blood makes stop vomit for porphyria diceases

[SuperEvilArtist]

A reverse-asmosis water purifier is recomended for those who suffer from any of the porphyria's. I have AIP and use Panhematin regularly to keep it at bay. For sickness I eat 3 grams of either medical marijuanna or hash. This greatly reduces the nausea and helps with the appitite.

[FliffyFloffyFlaf]

Is yours son doing better? :/

[mywavesofgrain]

Also if you are a med student reading this, our doctor who finally proposed these symptoms had the signs of the porphyrias also said that in med school they learn that the blood disease is so rare that most of the time they do not go into much depth on the subject or known testing of AIP

[mywavesofgrain]

How would you feel if you broke your leg and you couldnt walk, but they tested you and tested you and you swear it is broken, but all the x-rays look like your leg is just fine, and any and all other tests on muscles, ligaments, nerves say all is fine. You would feel crazy. Imagine vomitting like this woman's poor son, who has no explainable reason, no tests, no poisoning, no tears, lesions, cancers, and yet keeps vomitting. Blood Poisoning-check out the movie Powder, or The Others-Porphryria.

[mywavesofgrain]

Look the problem here is that people have mysterious attacks. They get tested for everything under the sun, moon and stars-results will come back negative every time. This leaves doctor's and staff up in arms with difficult prognosis. Blood needs to be tested and sent to a lab for porphyrin disorder. Our family has this disease passed down through generations now, and it has now attacked two possibly three family members. Many Many doctors were baffled by neg test results.

[benderbang48]

! WHAT THE FUCK IS THE POINT OF THIS HES THROWING UP WHO CARES GIVE HIM SOME FUCKING PEPNO BISMOL GOD U DONT HAVE TO PUT UP PICTURES OF HIS VOMIT ITS DISGUSTING U COULD TELL US THE FACTS WITHOUT A FUCK GALLERY OF REGURGITATED FOOD FUUCKKK!!!

[benderbang48]

THE ULTIMATE BULIMIC!!!!

[Legoman346]

Srry i act like that

[Legoman346]

This is fucking disgusting take this shit off of youtube!

[TheDarksEmpyrean]

thank you for educating us on a disease a lot of us have never heard of

[DanteWhite]

i have cutaneous porphyria and it sucks tough i dont vomit my skin is very screwed up. i cant do most things normal people do and well its very hard to live with it i am deeply sorry for your son his porphyria is way worser tan mine hope your son gets better

[dollazndiamondz]

I am terribly apologetic about your son mam. The doctors haven't subscribed you medicines to stop the vomiting. And he needs gatorade of powerade and pedialytes to replenish or re-hydrate him after these attacks. Another thing that helps stop vomiting sometimes is Ice in a cold towel to the back of the neck to shock the stomache and to keep him from regergetating. Soda crackers or yeast for the digestive enzymes. How about homeopathy doctors?

[niltsirk]

I have AIP , the pain is awful , it took 5 years to diagnose it.Doctors looked me like i was faking or trying to make em feel bitty or something and gave me all kind of different drugs what made me feel way worse.

[poetrygal1]

I am so sorry your son had to go through this! It is terrible being turned away from the ER when you are so sick(been there myself) My cadio. doc use to treat all sorts of patients with porphyria. He is great ! if anyone needs a knowledgable doc. in the Roanoke,VA area send me a private message.

[deathbyporphyria]

Dear Boomer76 thank you.. Sorry i did not respond to your comment sooner..

[boomer76]

I forgot to mention I went through an handful of doctors. Mostly because they didn't want to handle me becuase they didn't have the knowledge about the disease. I found one that did and he wouldn't treat me properly so I fired him and got a hematologist that has been great with me. Panhematin with my monthly attacks and d10 twice a week each week. It's helped a lot.

[deathbyporphyria]

Thank you..

[newmoongathering]

im sorry you suffer from such a terrible disease. my aunt has porphryia, and i have lyme disease and i wonder if it is possible that heme synthesis could be disturbed from unoticed infections such as babesiosis and bartonella? my aunt is positive as well for baseosis and bartonella, and i wonder if this is why here porhphyria came out in her middle age? its just a idea.

[boomer76]

I have aip. I've had a terrible time with our drinking water since it is chlorinated. I just got a point of use filter that is supposed to filter out the chlorine. Now I've just got to get it in. Hope it works. I'm sick of nueropathy.

[deathbyporphyria]

thank you for taking the time to review my info.

[cherniman]

Thank you for posting this. I am a medical student. I eventually want to specialize in treating porphyias and hopefully find a cure for these disorders. I am sorry for your bad healthcare experiences. I wish I could say it is rare but I have experienced it first hand when I was sick. It's horrific. After being in medical school I now understand it's not the doctors that don't want to treat the patient, it's the insurance companies and hospital administration that kicks people out of the hospital

[deathbyporphyria]

thank you I am suing the doctors.

[sarahkaylee1]

I've only met one other person with Porphyria through the hospital. Unfortunately I lost her company almost 10 years ago. She lost her battle. It's been a lonely road. I appreciate everyone's tips. Thank you for telling the real, not so pretty story of this disorder. I feel comforted to find understanding. Maybe one day our illness will get the attention it needs from the medical community. Till then we must keep fighting for awareness and maybe one day a cure! God Bless!

[sarahkaylee1]

I was able to attend college with help for the office of students with disabilities. I am now a working, functioning adult. I am very proactive with my disorder and trying may natural ways to help myself. It is still very hard.

[sarahkaylee1]

I have HCP. I went undiagnosed for almost three years. Vomit up to 15 times a day. a size 12 to a size 4 in a matter of weeks. Damage to my teeth. saw many specialists and even therapists. Test after test. I had a reaction to the sun and a dermatologist ran a test for lupus and found copro porphyrins elevated in my urine. I was lucky. Many with porphyria never get that positive test. Even with it I have a hard time with doctors not trusting my diagnosis.....

[Vanotr]

and so on until i'm well, and where from then? Time will tell. Gods, Goddesses, Deities All, My illness and its scars shall fall, This is my wish, And that of others, This is my will, So mote it be, Lords, I Command thee, SO MOTE IT BE SO MOTE IT BE

[Vanotr]

Then chant six times thus:

So Mote It Be,

That on this day,

All illness one part

shall fade away,

I shall be cured one part of ill,

[Vanotr]

An old Wiccan/Satanic Health charm In Velvet cloth wrap the following: Tea Leaves Lavender flowers Ginger Salt a Clove camphor Tie it with scarlet thread, and keep it beside one's bed. Every morning, when you awake, breathe in its vapours

[deathbyporphyria]

Thanks everyone...

[kwaynapher]

WOW, I am so sorry to hear that. I will keep your son in prayer. I imagine him distress with vomiting consistently!

[bipolarlex]

I have headaches (every day), stomach aches, sweats, fevers and vomiting for the last 2 months. My urine also turns red-brown in the sun and the sun, in general makes me sick. I am finally going to be tested. Has anyone with porphyria got full body dyystona (all my mmuscles seized and started shaking and I couldn't move anything except my eyes).

[deathbyporphyria]

I am starting a group in the next few months because neither yahoo group addresses the fact that porphyria makes you hallucinate. In addition they are not helping disabled vets with gulf war syndrome suffering from porphyria as well as agent orange.

[OBooHoo2]

My name is Jackie. I have porphyria as well. How old is your son? How is he doing right now? I sent you a friend request and I am praying for him and your family.

Jackie

[deathbyporphyria]

I replied to your friends request have not heard back from you.

[deathbyporphyria]

Not well I am doing a documentary on the whole thing. thanks for you interest..

[JBsBgstFan]

Thank you for this. I have Acute Intermittent Porphyria. This IS my life. GOD Bless your son and you

Kim

[floflo34600]

Hi Kim

It's so hard...

You know I'm with you, my friend...

flo

[jimBoRare]

Try the Hemp Kim!!! I'll ship ya some gnarly bud !!

[deathbyporphyria]

sorry but I found hemp to not help when you are severely ill.

[porphyria2]

I hate to go on about it, and I know its not the same for everyone but I can only say what has stopped the suffering for us. Porphyria is a chemical sensitive disease. A world renowned Dr. Mercola you can find on Utube a natural path gives great advice for non toxic living. This is the only way it can be beat you have to go organic no processed food. A TOXIC free home. From the school of Albert Einsteins school of medicine look up Dr. Laibow on Utube. I wish you well.

[porphyria2]

There is over 1300 mutations of porphyria & possibly 1000's more. I spoke with a specialist in Texas about it. We have a mixed type with acute. I almost lost my husband due to vomiting. Skin & bones the smell of death. We now have no attacks for over 3 years by not using a microwave going organic vegetarian & no toxins. Get a water filter that takes out fluoride. Toxins will cause attacks. No bad soaps deodorant nothing toxic all natural & organic. Make big veg stews. Drink green blended jiuce.

[porphyria2]

Been there done that with husband. One thing that helped my husband keep from tossing food & water after 3 emergency rooms in 2 days a Dr. Finlay gave Zofran this helped Demand a glucose drip & Anti nausea suppositories. I see corn very bad thing. Rice lots of rice. Green juice & wheat grass. Aloe vera coats Bowls. Remove toxins. Please try organics keep it simple. Rice & potatos. No sulfa foods. No oils no spicy. If its Iron overload Try Bentonite clay if he cant bleed. TRY Hemp protien powder.