Missionary encounters extremely bizarre skin condition in Eastern Europe (part 2)

About a month ago on this blog, I posted photos and a story about a missionary in Eastern Europe who is caring for a man who has keratin-like matter growing out of the skin on hands and feet (see part one of the story here). A month later, I can report that man's strange condition is improving - but what is causing the condition has yet to be exactly identified, it seems. The man is also getting the full attention of the medical and research communities in the region (rather mysteriously, as you'll see below). As you can see from the recent photos the missionary sent me, the growths have been reduced through chemical treatments, soakings, and whittling down (a dremel saw was used). While the research and treatments are still being conducted, the man and his family seem to be in for the long haul (click 'continue' below for more photos). The missionary told me...

"I have looked at the blog link, and I found some of the responses very helpful. I passed it onto the Romanian people in charge of the man. I will try to flesh this out a bit more for you. The man is on the eastern side of Romania, and I am on the western side, though the country is not so big (about the size of Oregon) it takes 16 hrs to get from here to there. There are no interstates, and every time you come to a new town or village you slow down to 25 miles per hour. I went by train to avoid the wintery road conditions. I saw him on a Monday, and worked on him for 2 hours cutting and cleaning and applying Compound W-type acid in areas. Approximately 90% of the growths do not have blood circulation or pain associated with cutting them. About 10% do bleed slightly and seem to hurt. After 2 hours he became very fidgety and I decided to stop. After 2 hours of work there was not much to show for it by way of a noticeable difference, though there were a lot of growths cut off. I would have needed to work on him a month or more at the rate we were going. I returned home on Tuesday having treated several areas with the acid to see what would happen with them, and I wrapped one foot with a Una boot, to see if that helped (some one on the blog suggested that). My Romanian contact there was going to return in a week and check on things. When he returned the next week, he found the man was gone. His mother said that on the previous Friday, an ambulance had come to their home (they live in a rural area) and said they had come for him. They loaded him up and took him away. Neither he nor his family had called for an ambulance. He was gone about a month. He is back home now (he returned home just before Easter). He was in a hospital in Bucharest where they mainly did tests, as far as he knew they did not diagnose anything. The medical system here is not very forthcoming with information in general, not just in this case. He thinks that he will be going back in May. They did cut many more of the growths off his hands and they look much better. They did nothing to his feet. I think it is a great improvement. I think what you did on the web sight was very good and helpful, I was impressed. I will send you my newest pictures."

"As far as sending money, I left money with my contact there. So far, none of it has been spent. I would be concerned about giving him or his family money directly. I don't think that would be a good idea. If money was needed for the medical treatment, I could see that it reached the right hands, but at this time there does not seem to be a need for additional money for them. It does not appear that any of the anti viral drugs mentioned [in the blog post's comments] have been used and do not appear to be readily available here, I would like to have them and be able to offer them to the doctors treating him, but currently do not have a source for that. If someone was able to get them in the US, I could give you an address in the US [email me for address and info] to send them to, and the next person that I knew of would be coming to Romania could hand carry them to us here. The Romanian postal system is very unreliable, so I would not trust it with the meds. If someone wanted to donate for medical needs (in Romania) we would happily administer the funds, but at this time there does not seem to be a need for additional money for Ioan. Please feel free to write and ask more questions if you have any or ask for updates in the future."

When I first posted this story, I kept names, faces and even locations out of it as requested. Although now it appears now that the man's plight has made a few Romanian news outlets. You can see those stories (with some great additional photos) here, here and here (a very rough Romanian text translation program can be found here - if anyone else can provide an exact translation, please do). The man is under the primary care of Dr. Carmen Madeleine Curea, the primary dermatologist at Spitalului Clinic Colentina (in Bucharest), as well as some other specialists. Although they aren't saying much about what they have discovered, or even if his condition is precedented at all, at the very least he appears to be being cared for, and his condition is being kept under control.

(click each photo for larger view)

Comments

[Petrica]

Thanks to everyone!

I really hope I will be able to sustain this man till the (almost) end of his nightmare.I just want to add something which is not to be found on my blog (http://petricapatilea.directnews.ro/bird-man/).
Along the years, doctors used to "treat" Ion with Neotigason (I don't know the English of it, or the substance). But, his expensive medicine seem to have no effect. So he does no longer take it! That is all about drugs! Nothing more! Of course, there are still a lot of risks. I just posted on the blog dr. Curea's oppinion (dermathologist)on this. And yes, the virus papiloma (one of those about 20) is responsable for the disease - Lewandowsky Lutz.
My mail ppatilea@yahoo.com

Thanks again!

[scottie]

Yes why no mention of interferon of aldara. I would LEEP the remaining lesions and apply aldara/imiquod....at least until the remaining surgery. Why not do this to the feet too if grafts are not appropriate?
Will this blood born virus reappear in the newly grafted skin?

[scottue]

Hi Petrica,
Neotigason is another name for acitrecin which is a retinoid used to treat psoriasis. Its related to vitamin A. It should help with reducing the symptom of hyperkeratization but in this severe case of such long duration Neotigason may be futile w danger of contrindications.

[Katya]

http://www.anaisdedermatologia.org.br/artigo_en.php?artigo_id=10217

I think this is the example of Interferons and Acetritan that Erik refers to earlier. The young man had the same disease and this combination worked. This is different from what the doctors tried on Ion already.

[Historianita]

Well, now I'm really worried. I don't understand how Ion will stay healthy without interferons since he has no immunity to HPV. Also, what kind of problems could he have sexually-transmitted HPV? Maybe when his hands & feet were badly disfigured STDs were not an issue for him, but now that his life is improving...?

[Steve Allen Frey]

I think I know whats causing this mans problem and it's the same as with morgellons, the bryozoan. contact me if you want to know more. safrey@earthlink.net

did anyone ever consdier that maybe this isnt a 'disease' per say.. but maybe.. just maybe, this guy is a superhero? i know it sounds like a joke, but people are too quick to lump everything that isnt good and/or normal into the 'bad' catagory.. just a suggestion.

[jayster]

how about a face shot? what does the poor guy look like?

[nick storen]

I will never be able to eat chicken fingers again.

[Ted French]

This condition gets a lot of press here in Bucharesti and as yet no Dx. Treatmeant has improved one hand.

[Steve Allen Frey]

He should be seen by a marine biologist because I think he is infected with a colony of Bryozoans, a microscopic invertebrate that is known to encrust with calcium carbonate or chiton, this is also the cause of morgellons.

[LOL]

To the above poster:

Nothing says "credible opinion" like the mention of Morgellons. Personally I find it highly distasteful to mention your internet hoax in reference to a man afflicted with a horrible, life-altering disease that is actual accepted, recognized and diagnosed as something other than delusional parasitosis. It is apparent to anyone with eyes that has ever seen a wart before that this likely had something to do with HPV and keratosis rather than the inhabitation of a marine creature in the human skin (an impossibility to anyone with a shred, or if you'd like "thread," of common sense). No one finds this humorous.

[Steve Allen Frey]

I have no intention of debating the validity of morgellons with someone who has their head buried deep in the sand, especially since you lack the integrity to even post your name. You obviously are a rather ignorant individual since you feel that a marine creature cannot parasitize a human, have you ever heard of nematodes, they are marine organisms, many of them parasites, and some of those infect humans. The inabilty to think outside of the box is probably why the doctors cannot diagnose this mans problem, it is certainly one of these reasons morgellons is as contraversial as it is and still debated as DOP. If you are one of those who believes that morgellons is DOP then I challange to view this video and tell me that this organism with it's brilliant green eyespots and flicking tentacle is a dislusion.

http://curezone.com/upload/Parasites/byrozoan/from_SaFrey/live_specimen.avi

This organism was collected from my hair and I challange you to place it with any organism known to parasitize or reside on humans or any other organism for that matter. This organism is responsible for the symptoms consistent with morgellons and eventhough no direct reference can be found for it my research has lead me to conclude it belongs to the ectoprocta(bryozoa) phylum. My conclusion is based upon an overwhelming amount of evidence that is too great to list here. The article mentions that these growths are of a keratin-like matter, keratin is a structural protien like chitin and both are produced by the bryozoan, as well as many organisms. This mans condition exists on his feet and hands, with many morgellons sufferers, including myself, the symptoms are the most severe on the feet and hands causing the extreme thicking of the skin creating an almost unhuman covering, I am only taking this condition to an extreme when I suggest that this mans condition could possibly be of the same origin as the REAL disease known as morgellons. Since his condition is extremely unusual don't you think that the cause is going to be unusual as well? Think outside of the box sir, that is if you have any intention or desire to help this man. Just because there are no reports of something taking place that doesn't mean that it can't.
safrey@earthlink.net

[Eric]

Here's a link to a newspaper story about Ion. I can't read Romanian, but it seems to be about a financial appeal for Ion. The response seems to have been very generous. I think the woman in the picture is an 84 year of very modest means. Even though she doesn't know him she donated to his fund.

http://www.sisnet.ro/index.php?page=articol&id=14227

I'm sure most people here would be more than willing to donate something for Ion's cause. When the documentary on Ion is broadcast on the Discovery channel in November, many thousands will want to donate. Some bank details are supplied, but I'd be reluctant to contribute, until everything was explained clearly in English.

Perhaps, someone involved with the Discovery channel could supply deatils of any fund in operation for Ion and how it may be possible to donate?

[Carrot]

Here are some pictures of Dede who also has the same condition, but much worse:

http://acemanonline.wordpress.com/2007/06/17/freaky-dede/

[jjschlief]

There is actually another person with this disorder. His name is Tang somewhere in Asia. Please see photos. http://www.antihpv.com/jkxx/2005081602.htm

[jjschlief]

Also see jkxx/2005081601.htm & jkxx/2005081603.htm on http://www.antihpv.com/

[historianita]

The link below connects to a research paper about the genetics of 2 Chinese men with epidermodysplasia verruciformis. One of the patients appears to be Tang, the man mentioned in jjschief's post. The paper includes a few photos.
http://www.genomics.org.cn/bgi/news/more/a.pdf

[Sela]

The photos in the paper at genomics.org, above, look like this one, which was discussed on metafilter awhile back: http://ask.metafilter.com/26863/Skin-disease-dont-look-if-you-dont-want-to-vomit

[jjschlief]

The man in figure 1 of the link posted by historianita is almost certainly Tang. I would like to see a follow up photo to see if he is having any luck controling the HPV strain. When I first saw the photos of Ion, Dede, and Tang; I was deeply sympathedic. Ever since then I have been obcessed with trying to find out as much information about this disease and a possible cure. I am willing to donate my time, money, all information that I have already discovered. I can't think of a worse thing that could effect someones self-esteem. My email is jjschlief@comcast.net , anyone contact me if I can be of assistance.

[historianita]

Now that I've had time to read the research paper at genomics.org I see that it is more accurate to say that the subject of the paper is the DNA of the cutaneous horns afflicting 2 Chinese men, not the DNA of the men themselves. Epidermodysplasia verruciformis is never mentioned. The researchers report that although both biopsies show HPV-2, each patient was infected with a single strain of the virus that developed unique mutations. These unique mutations cause the distinctive look of each man's horny growths.

The only treatment mentioned is surgical removal of the cutaneous horns. Tang's horns are thought to be the longest recorded (21 cm). His thickest horns were 5cm in diameter.

[Eric]

Ion has undergone a second operation. It looks like the doctors are making great progress. The news report looks like part one of a longer report on the operation. The dyplasia on his left hand is much less solid and part of his palm is starting to re-emerge. So it looks like he is getting powerful drug treatments along with the operations.

http://www.acasatv.ro/noutati-acasa/emisiuni/la-povestiri-adevarate-imagini-in-exclusivitate-de-la-operatia.html

[Historianita]

Thanks for the link, Eric. I hope you're right about the drug treatments. I noticed Patrica's website is gone. Maybe she'll stop by here and give us an update in English.

[historianita]

I see Petrica's blog is back online.

[James]

Oh Lord. If skin grafts are what it took to rebuild Ion's hands, can you imagine what will have to be done for Dede? He'll need a full body skin graft! That's assuming someone intervenes and helps him. Otherwise, this condition will just overtake his whole body. Does anyone know if there is some NGO helping Dede? I'd donate in a second to help that poor guy. Dede needs to go to the U.S. to get the assistance of some very dedicated doctors.