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Hello readers,

At 56 I was stricken suddenly and severely with delayed pressure urticaria. That's when my life of hell began. I don't need to go into the list of disabling symptoms and useless attempts to control them. I'm sure you know them if you are reading this.

To make a long story short, after going to several doctors with no success I began scouring the internet for answers. After six months of searching I found a medical abstract on a hospitalized patient in Italy who had DPU which had been cured. She had an intestinal parasite called blastocystis hominus and was given a course of some antibiotic.

Upon seeing this I immediately had an O&P test done by a local lab and not only did I have Blastocystis hominis I also had Dientamoeba fragilis . Yikes!

I took the results immediately to an infectious disease doctor. He put me on a short course of doxycyline and the symptoms started to slowly disappear. He said my immune system was HOT and it might take six months for the symptoms to go away entirely. Sure enough, almost six months later all the DPU and other Chronic Urticaria were gone!!!!!

It has now been almost two years and I have had NO FURTHER PROBLEMS!!!

I'm not saying this will be the pathway to a cure for you BUT IT MIGHT!

Good luck and God Bless!

Note: Keep in mind that most medical literature says there is no known cause, no known treatment and no known cure for this rare disease.

Some notes on my experience:

* Do NOT take NSAIDS for pain. They will aggravate the condition

* Cold compresses on the lesions were the ONLY thing that helped.

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Hi Downsouth,

I have read your post with great interest , I have been suffering form DPU for six months now and like you I'm not willing to sit back and just accept it. Can you tell me if you were suffering any other symptoms that would indicate a parasitic infection . My DPU started about 4 weeks after I returned from a holiday in Egypt, just makes me think I could have picked something up.I have not had any stomach cramps or things like that. I'm going to have the test done anyway , thanks for your post
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Hi Downsouth ,

Thank you for posting this. My husband suffers from this for the last 2 years. You're the first case of cured patient I ever found after searching the net for so long. Waiting for O&P results now. I hope it will work.

 

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hi thank you for the post. my son was diagnosed by the doctor as having DPU.  He seems hopeless of his disease and his interest to go back to bis work has stopped.  I will send his testimony to him so he can refer it to his doctor and perhaps consider your testimony, conducting O & P laboratoty.
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Hi do you know if this parasite was found during a general parasite test or if it is a specific test? I've had multiple parasite tests and never positive for anything. I've had this over twenty years. It's a nightmare. Thanks for your information. And CONGRATULATIONS! I've even been to mayo clinic. I wasn't impressed. The first doc I saw didn't even know what a probiotic was. Arguing
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I had these hives for four years. I felt tortured every single day. I had hives everywhere on my body. I couldnt hold my child without getting hives on my sides and forearms. I couldnt do anything that put any kind of pressure on my skin. I woke up everyday with huge wheel hives on my head face back legs feet hands you name it. All from tossing and turning in my sleep. Doctors all told me I was fine and gave me zyrtec, benedryl, allegra, pretty much every one you can think of. The only thing that helped was prednisone. I had read so much bad stuff about it that I avoided it until I couldnt stand the hives any more. I literally wanted to chop my hands and feet off it was so bad. I went to a dermatologist she gave me more antihistamines- did not work. Then one day I had broken out so bad it looked like I had been attacked by hornets or something I had no prednisone and was searching for relief when I found a bottle of some lotion- I cant remember if it had shea butter or not but I put it on one arm that had really painfull wheels on it. Miraculously in 20 minutes I kid you not every hive that I had put it on was now only slightly pink and not painful at all. I was amazed as it worked faster than prednisone. I put it on my whole body for a couple days and I havent had a hive since. FRIGGING MIRACLE I SWEAR. That was the last time I had hives and It was almost 2 years ago. Thats after being tortured to the point of wanting to die for almost 4 years straight. I would not wish this suffering on my worst enemy. NOTE no other lotion gave me relief as I had tried liquid vitamin E, Green tea, Calamine, I even tried colloidal silver, gold, platinum, about everything you could imagine and nothing worked.

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I have also had DPU for almost 20 yrs now, been to numerous Dr's, specialists, nothing helped it. It went into a remission in my mid 20's for a couple yrs, but still came back! I saw a rheumatoid arthritis Dr about 2 yrs ago, for back pain, and was diagnosed with anklosing spondalitis.I started taking Humira injections soon after and it has stopped the delayed pressure urticaria!! If I get sick and cant take the humira for a wk or two, the DPU comes right back. While I'm on the humira, not one outbreak! Donno why this is, or how, jus know I like it!! Jus an FYI.
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Doxycyline would not 100% kill those parasites. You may have had another bug like H.Pylori and nailed it. Also Doxycyline has immune altering properties it is used in some odd diseases for that. So this is a long shot and may never have been the reason doxy helped.

TNF inhibitor yep those are the future for us guys the RA meds. That is why Ketotifen helps some people as it is a mild TNF Alpha inhibitor. But it is given as an H1 blocker. I am not surprised it helps you.

GO FIND A DOC WHO WILL TRIAL AND ERROR IMMUNE MODULATION! This is an auto immune disease. It needs worked with like RA not an allergy. Just because allergies are obviously linked to hives does not mean all of this is allergy based. Docs are a bit clueless and fear to use auto-immue meds but they have no idea how painful this is! When one accepts it is an auto immune disorder we can start looking at better treatments for this - we already have developed many of these already for other auto-immune disorders.

It is not food, environment allergy stuff etc it is AUTO IMMUNE. The mast cells are spraying out sentinel cells and the immune system then simply over reacts to what it sees. The immune system starts inflaming healthy tissues. You can watch the blood vessels open in some people and the immune system attack in real time - especially those with skin writing also (common).

There is no getting better period this is life long once triggered - the immune system has gone mad immune modulation is the only solution and badly needs more research! That is the only path to remissions in the same way RA remissions are sought. So diet and all that nonsense is a waste of time in pressure urticaria.

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In late 2010 while at work strange things started to happen to me. I was 35 years old. Up until that point I had not needed to see a doctor in nearly 17 years! I work as a video engineer in the live events industry and was and still am an extreme sportsman. My work and sports have always kept me relatively fit an healthy. All of a sudden one day while away while working away from home I started to develop serious pain and swelling in my feet and knees. Nothing like this had ever happened to me before. After about two days I couldn't walk because the pain was so intense. At first the only thing i could think of that matched the symptoms was gout? It got so bad that I had to cut the trip short and return home.

After a few days at home the pain came and went and I started to develop a strange rash all over my body. I relented and went to see the local Dr. She couldn't figure out what was going on either. She sent me home with an anti-inflammatory and told me to come back if there was no change. Two days later i returned to her for another consultation. The rash and swelling had gotten worse! She referred me to the local hospital who promptly put me in a bed in the infectious diseases unit. After being there for 9 day and having a wide range of of tests done every day, it was eventually identified that I had a nasty form of Hives. They had no idea what was causing it and what type it was. From then on I lived on a cocktail of non steroidal anti inflammatory's (500mg Naproxin) and antihistamines (180mg Fexafenadine hydrochloride). I was told that there was no known cause and no known cure. I would just have to live with it as best I could and hope it went away on its own.

Now being an extreme sportsman with multiple national and international accolades I wasn't going to take this laying down. This bloody thing wasn't going to stop me from doing the things I loved. I wasn't going to be told what I couldn't do. I spent the next agonising year researching this disease and ultimately came to the conclusion that I had delayed pressure physical urticaria which was confirmed by my doctor. I was now in a position to try and get rid of this annoyance that had kept me down. Not that I had allowed it to effect me any way. I continued to work and participate in my sport albeit at a slower pace. I learnt to manage things and worked around the issues as best I could.

Like everyone else i tried everything from creams, lotions and potions to hot and cold compresses. I tried various antihistamines and everything else i could think of. I even tried a bloody chinese herbalist!!! I mostly lived (and I use the word lived very loosely) on a cocktail of non steroidal anti inflammatory's (500mg Naproxin) and antihistamines (180mg Fexafenadine hydrochloride). Life was HELL!!

About a year ago while continuing my research into the DPU issue I came across the post above and did a bit more reading on the things that the poster, Downsouth had made mention of. I took this new information and went to my new Doctor (I had moved to another part of the country at this point) and he reluctantly prescribed me with a course of Doxycyline. With in about two weeks of finishing the Doxy, the symptoms had subsided noticeably. Four months later....... it was GONE!!! No swelling every time exerted myself, no constant pain, no rash, no living in hell. My Delayed Pressure Physical Urticaria was gone!!! I had my life back!!!!!!!!!!!

A year on and there are still no signs of it returning. Im back on form. I have since become the UK inline downhill champion and have even represented Great Britain in the international inline downhill world championships!!

Please let this post inspire you to go out and research things for yourself. The pharmaceutical companies and the hospitals and doctors wont do it for you simply because there are too few of us that suffer from this to make it economically viable.
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I have DPU for 4 years. I have the O&P lab test done today, I promise I will let you know when results comes out positive. all The best

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the result for stool test was negative. but the blood test showed CRP 21.4 which is really high. I do not know what to do or wether there is a cure.
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I cured myself very easily.
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Hi I have read your response with great interest and found it useful. When you refer to RA meds , what do you mean by that. Please define this terminology for me
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HI everyone hope all is well! Just an update I still havent gotten any hives since using th gold bond lotion- also I cannot remember if it was gold bond with shea butter or gold bond ultimate so try both. I pray this never comes back! Prayers to everyone with DPU...
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My guess is you didn't have true DPU
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