Yellow Nail Syndrome

My father has been suffering with the effects of Yellow Nail Syndrom (syndrome) for several years now. He's had pleurodesis on both lungs and is currently suffering with very profound lower extremity edema. Does anybody know of any way to find a physician in the Carolinas who have experience dealing with this disorder? His local physicians are stumped.

[Pegdaddysgirl]

I too am from the Carolinas and i have a boy friend who is also dealing with this disorder , we just moved him from Missouri where his doctor there find out he had it.  We where tolded that there is no cure and that there was only  40 cases in the United States with it and it would effact the liver then the lungs we too are trying to find a good doctor that knows what to do for this , and if i hear of anything i will be glad to post it on here so others can read it . May God Bless you and your family , and to all the others who read this you all are in our prayers .  
              Peggie Phillips  from South Carolina

[BridgetR]

I'm suspicious that I have YNS as well.  It must be rare because for 10+ years and frequent physical exams and emergency room visits, no one has ever commented on my yellow, malformed nails...not even the podiatrist -- just said that it was not fungal.  Now that I've determined this might be the cause of all my problems (breathing problems, enlarged lymph nodes, etc.), I'm not sure what kind of doctor to go to first.  I know you posted your comment back in 11/08, but in case you get this, any ideas would help.

I hope that your boyfriend has had good luck finding treatment and that it is working for him.  I will keep him and all that are experiencing this rare condition in my prayers.

[Dan_Lundgren]

I have yellow nail syndrom (syndrome) and would like to share my experiance in the hope that someone can be helped by it.

I am a 61 year old male living in Sweden. My symptoms started about six years ago. I saw a number of doctors that all saw the symtoms (symptoms) as independent problems. I was checked for a multitude of disorders whithout getting a diagnosis. Becouse of the scarseness of the syndrom (syndrome) i belive it is hard to find a doctor that has heard of it.

After about a year of increasing problems, clawlike nails, severe caughing, and swollen lower legs, I found out about yellow nail syndrom (syndrome) on the Internet.

I learned that large doses of vitamin E could hold back the symptoms from worsening if not cure the problems. I now eat 500 mg vitamin E in the morning and the same at night. Vitamin E in large doses is laxative but my stomach gradually got used to an increasing dose. I also take a small gulp of oil and vitamin C together with the vitamin
E. This is said to help the body to take up all the vitamin E.

Soon after I started this treatment my nails started to grow out normally. They are now completely normal. The swelling of my legs is only slight. I still have a light caugh and some running from the nose, but nothing like it was before the treatment started. My condition has been stable for about five years

I learned that there is different forms of vitamin E, natural and sythetic. It is the natural form that does the trick. The proper name of it contains greek letters and I dont know how to write that here.

In connection with the dose I should say that I weigh about 80 kg.

I hope this can be of benefit to someone

Dan Lundgren

[Dan_Lundgren]

I have yellow nail syndrom (syndrome) and would like to share my experiance in the hope that someone can be helped by it.

I am a 61 year old male living in Sweden. My symptoms started about six years ago. I saw a number of doctors that all saw the symtoms (symptoms) as independent problems. I was checked for a multitude of disorders whithout getting a diagnosis. Becouse of the scarseness of the syndrom (syndrome) i belive it is hard to find a doctor that has heard of it.

After about a year of increasing problems, clawlike nails, severe caughing, and swollen lower legs, I found out about yellow nail syndrom (syndrome) on the Internet.

I learned that large doses of vitamin E could hold back the symptoms from worsening if not cure the problems. I now eat 500 mg vitamin E in the morning and the same at night. Vitamin E in large doses is laxative but my stomach gradually got used to an increasing dose. I also take a small gulp of oil and vitamin C together with the vitamin
E. This is said to help the body to take up all the vitamin E.

Soon after I started this treatment my nails started to grow out normally. They are now completely normal. The swelling of my legs is only slight. I still have a light caugh and some running from the nose, but nothing like it was before the treatment started. My condition has been stable for about five years

I learned that there is different forms of vitamin E, natural and sythetic. It is the natural form that does the trick. The proper name of it contains greek letters and I dont know how to write that here.

In connection with the dose I should say that I weigh about 80 kg.

I hope this can be of benefit to someone

Dan Lundgren

[KFB818]

I am a male, age 62.  It took 6 - 7 years to finally get the diagnosis of YNS.  At first, it was just a nuisance (yellow nails, sinusitus, some swelling in limbs).  Then the swelling in hands and ankles got worse, then the pleural effusions came on (lung cavity needs to be drained every 3-4 weeks, and now seems to be sooner).  

This condition now feels very threatening.   I am under the care of a Univ of Penn doctor (I live in the Philadelphia area).  I am taking a perscription drug called Octreotide for the pleural effusions.  Other YNS people have tried this drug with some success.  I have been on it for almost 3 months, but I fear the Octreotide isn't working to reduce my pleural effusions, and have lined up two other perscription drugs (Zoledronic Acid & Bevacizumab; via Internet research) that I will try to get my doctor to look into (and get the insurance company on board).  With all three drugs, the goal is to stop the pleural effusions from forming.  These last two are used with cancer patients who get pleural effusions, but the studies indicate they help people with non-malignant effusions.  All three are supposed to also help with the lymphedema (though the Octreotide hasn't done that for me, so far).  

Diuretics don't work on me, and I read on the LymphedemaPeople website that if the swelling is caused by a lymphatic disorder (such as YNS) that using diurectics (which reduce water, not lymph) can do more harm than good.  Still, for some YNS people it seems to work.  I also tried vitamin E; didn't work.

I have read that there are now between 100 - 150 YNS patients world-wide -- not enough of us to get any real attention.  Though YNS people all have the same 3 major symptoms, this disease seems to affect each of us quite differently.

The pleural effusions are extremely affecting my life. As the lung cavity fills up with the plueral effusions, it compresses the lungs, making it very difficult to draw a breath. It's only been a week since I was last drained, and already it's getting difficult to breath. Each time I am drained, about 4 liters (yes, liters--about 5 pounds of liquid) are removed. The doctor wants to do a pleurodesis, where they "glue" the lungs to the lung cavity to block the effusions from going into the cavity, but then the blocked liquid will go somewhere else. I read a case study of a YNS person who had that operation done, and it killed her. Her legs actually split open from the massive buildup of fluid (10 liters a day of fluid was coming out of her legs). At least the lung cavity can be drained--the overall body can't be.

Is anyone aware of any other support groups?  I have found some discussions on LymphedemaPeople under Lymphatic Disorders and under Rare Ophan Diseases, and also on MedHelp.

[coughinggirl12]

I have this too and have had it for about 10 years.  I'm only 33.  I have not found a doctor who can help.  I would also like to find a forum of something where we can exchange ideas and such.  Thank you!

[coughinggirl12]

I have this too and have had it for about 10 years.  I'm only 33.  I have not found a doctor who can help.  I would also like to find a forum of something where we can exchange ideas and such.  Thank you!

[KFB818]

Good to hear from someone else who has this.  What YNS symptoms do you have?

I first showed YNS symptoms in 2005; it started with sinusitis, then yellow nails, then swelling (2007), then pleural effusions (end of 2009, got bad in 2010).  

I go to a Penn pulmonologist, and get my lung cavities drained every week, about 2 liters each time, alternating between the two lung cavities.  I've been taking shots of Octreotide since June 2010--first the daily shots (500mg twice a day then in Sept 2010 500mg three times a day) then the monthly shots (30mg) starting in Jan 2011.  Octreotide helped 2 other YNS people to control pleural effusions.  I think you can only get Octreotide from a major medical facility, such as Penn or Mayo clinic, etc, and I only convinced my Penn doctor to give it to me after finding those 2 articles.  I am very heavy into research.

Last fall I saw a Swedish medical study called "Titanium, Sinusitis, and the Yellow Nail Syndrome" that claims that titanium and/or titanium dioxide is the cause of YNS.  You can read it at: http://www.springerlink.com/content/55n8226584171427/fulltext.pdf.

I had 2 "shed" fingernails tested (as was done in the study), and it showed I have titanium levels:   6.2 µg/g in one nail and 5.8 µg/g in the other.  I also had the Melisa blood test for metals, which showed I have a mild metal allergy to both titanium (4.1) and titanium dioxide (3.5).  No other metals tested positive.  

I have stopped intake of titanium dioxide (it's everywhere--in pill/vitamin/candy coatings, toothpaste, gum, hair dye, cosmetics, cigarette paper, cigarette filters, some cheeses/soup, etc). In food/medicine ingredients, you see it as titanium dioxide, E171, or CI77891.  Its chemical name is TiO2.

I also had a crown that had a titanium pin removed, as well as the other 4 gold crowns because the gold interacts with titanium, causing the release of titanium ions, which causes the problems.  The crowns/pin removal was at the end of 2010.  

It's been two months, and so far, there has been no real reduction of the pleural effusions, though I have seen improvement in the swelling in my hands.  It's very hard to stop all intake of titanium dioxide.  There are some medicines (coated in titanium dioxide) that I must occasionally take, for which I haven't been able to find a replacement that doesn't have titanium dioxide.  When I take them, the pleural effusions are worst that week.
  
I haven't given up on titanium being the cause of YNS.  The alternative is an operation that prevents the fluid from going into the lung cavity.  There are two procedures for this:  one glues the lungs to the lung cavity to block the fluid, the other blocks the vessels that bring the fluid to the lung cavities.  

But since this just blocks the fluid, and doesn't stop it, I am resistance, especially since I saw a medical study where a YNS person who had this operation died when the massive fluid went to her limbs, literally spitting her legs open, and shutting down all her organs.  There is another procedure where the swollen legs are cut open to drain the fluid and a skin graft is placed over the "open" skin, but this is a solution I cannot condone.

Only a third of YNS people get the pleural effusions, so this may be something that you never encounter.  

As you can see, this condition has become pretty threatening to me, and I am trying very hard to find solutions.

[AP00083]

Hi,

My mother has just been diagnosed with YNS and has terrible lung problems. She has been in and out of hospital for years now and they are only just diagnosing it as YNS. Her quality of life is terrible and she has had to stop working and can't do anything really.

Some of the posts on this forum have been over a period of several years. Is there anybody that has had any success with treatment? We are getting desperate! I am sure you all recognize the frustration.

[KFB818]

Sorry to hear about your mother.  I have had YNS since 2005, with large pleural effusions starting in 2009.

I get monthly shots of Octreotide, which helped 2 other YNS people with pleural effusions and lymphedema.  It hasn't done much for me.  

There is another study where 2 YNS people with T and B cell deficiency got IVIG/SCIV treatment and it helped their pleural effusions and lymphedema.  I got tested for T and B cell deficiency, and my immune levels were normal, so insurance wouldn't cover it (it's very expensive). I really wanted to try this.

I chose to not get pleurodesis‏ (there is one study where the fluid--blocked from the lung cavity--went everywhere else in the body). The person died.  

I also talked to another person whose YNS daughter died after getting thoracic surgery (which blocked the fluid from the lung cavity, sending it everywhere else).

I now need daily drainage (get about 500 ml each day, each side).  I got two drainage tubes put in (one on each side), but not the ones that dangle outside the body.

Instead, they feed into a chemo port, which is under the skin. You use a needle to access the port and drain the fluid. I live in the Philadelphia area, and a Penn doctor used this novel approach.  I was the second person in the world to utilize a chemo port like this, and since then, a couple of other people (not YNS) have had this done. A chemo port is designed to put medicine in, not remove pleural fluid, so sometimes it clogs.  Hardly perfect, but better than getting weekly thoracentesis.

Still, it's hard on the body (especially since the pleural fluid is high in protein--which the body needs, but I'm draining it out), so often I don't feel as strong as I would like.  I'm getting my thyroid checked because there was a recent study that linked 2 YNS people to low thyroid.

In one of my posts, I discussed the titanium dioxide / titanium study (it was felt they caused YNS).  I've been titanium dioxide / titanium free for about 2 years--it didn't work for me.

I frequently look through the PubMed site, hunting for treatment. So far, it's been a challenge.