Sunday, October 4, 2009

Questions posed on Behcet's and dental involvement

Again, on dentaltown, these questions were posed in response to my comments on Behcet's and dental involvement.

If nothing else, it sure sounds like you have done your research on this topic! I can certainly follow the logic of your argument which leads me to think you might be on to something. Just a couple of questions from someone who is being exposed to this idea for the first time:
1. Is the symptomology of a Bechet's patient generally the same as a patient with a classical presentation of periapical pathology? i.e., do they go through the stages of cold/hot sensitivity followed by a total loss of sensation once the tooth has become necrotic?
2. Is the radiographical presentation the same? Does the lesion have the same classical appearance, or is there something that might distinguish it from the classical presentation?
3. Is there an increased rate of other dental related issues other than endo present in this population of patients, such as higher caries risk, malocclusion, etc? Given the description of the etiology of the disease you provided (circulatory issues, etc.), I would tend to think that these patients might have issues with gingival health-just speculating.Anyhow, I think the topic is certainly worthy of discussion.

And my response:

Good questions.
To # 3. There is a lot of literature out there on the increase in periodontal disease in Behcet's. That is well documented. The same with the classic DMFT (decayed, missing, filled teeth) that is used in dental research. In reading these studies, the assumption is made that the missing component is due to the increased periodontal disease and/or decay due to decreased oral hygiene. That coming from the fact that it is painful to brush and floss when there is a crop of ulcerations present. That is all very true. My feeling is that the Missing component is partly due to the root canal issues. People with this disease have huge medical bills. One study says that there is an average of 7 years of dealing with the disease before they come to a diagnosis because there is no marker for this that you can test to give a diagnosis. It is arrived at by the process of elimination. They also have huge pain issues in many parts of their body. If they can eliminate on pain by just pulling a tooth, its done. Plus the cost is prohibitive at a time when they are already faced with many medical bills.Also, with Behcet's, inflammation anywhere in the body will tend to ramp up the inflammation and cause more sores in the classic Behcet's sore locations. This too is very well documented and discussed in reference to periodontal disease. When I have a patient without Behcet's with an asymptomatic abscess, I talk to them about how that is a drain on their immune system. There is a lot of literature out there about how the inflammation of perio contributes to heart disease, stroke and PAD.
My feeling is that if necrotic pulps are treated earlier, not only will they save more teeth, but it can reduce inflammation that will also help with the overall inflammatory process of the disease systemically.

Which brings me to #1 and #2(A preface to this answer first - My experience with Behcet's and root canals consists of a sample of 2 patients, so it is not like I have done a large sampling of research on this. It is hard enough to get any research done on Behcet's from the medical side because the rarity (3 in a million) makes it an orphan disease. But those 2 patients were my wife and her sister, so I was able to see the progress of their problems like no other researcher would ever be able to see.)
#2 They can have the classic radiolucency of any abscess, but more often than not, there is little to no radiolucency present. So that is the first difference that would make a dentist reluctant to proceed with a root canal. I was reluctant on my own wife at first to do root canals because it didn't fit the normal sequence of events in the death of a tooth. We went through checking all the different non dental origins of pain possible with no results. The clincher for me was when after a long line of physicians and tests, I would open up a tooth with no decay or no radiolucency and the pulp chamber was dry with just powder present and after the root canal the pain subsided.
#1 Some did the classic stages, cold/hot sensitivity, loss of sensation then big pain suddenly. But like the answer to #2, more often than not it is not like that. What I saw diffuse generalized pain in the area of the affected tooth/teeth. There was sensitivity to cold, but early on it would be a delayed sensitivity 5 to 10 minutes after something like eating ice cream. But then the pain would linger for several hours and actually increase over time before it started to decrease. Pain to percussion or biting only came after delayed cold sensitivity had been around for weeks. But, when the pain finally started in earnest, it was constant, relentless and intense. (10 of 10 on the pain scale) Then later, there was large amounts of swelling and inflammation in the surrounding soft tissue. This was often without radiolucencies present. I fully expected to see draining sinus tracts and pockets of pus to drain. When an endodontist did some apicoectomies on teeth that continued to hurt after RCT, there was no apparent infection. And yet the apicos relieved the pain. There was one huge swelling in the maxilla. After several oral antibiotics that were ineffective, our physician went as far as to do IV antibiotics before having an oral surgeon go in to drain the area. When he got there, there was nothing to drain. It was inflammation out of control from the vasculitis caused by the Behcet's. At some point in all of this it was shown that the WBC count was not elevated during this time.

This scenario was part of what lead us to the diagnosis of Behcet's in the first place. If it wasn't an infection, then what in the world was it? That lead me to vasculitis possibilities. The other systemic conditions fit also and then we came to the Behcet's diagnosis.

At a conference of the American Behcet's Disease Association in 2007 they allowed me to get up in front of the conference to ask about dental related problems. In a very un-scientific poll there, about 20% of the Behcet's sufferers reported similar experiences with their teeth.

One has always stood out in my mind.
He was an ex Navy Seal. (no wussy whiner here) His wife had divorced him over issues created by the Behcet's. He had custody of his kids. He talked to me after bringing up the dental issues at the conference. He told me that the only reason why he hadn't put a gun his head because of the pain in his head is that he knew that he had to be there for his kids. He was planning on having all his teeth pulled and getting full dentures because he couldn't stand the pain any more. He let me examine his teeth. He did have some decay and periodontal disease present, but not in all of them. The degree of pain expressed by Behcet's patients is not the same as the average patient. Again, this makes me feel that it is at least worth investigating to help give relief to these people.
This is a note to the dentists on dentaltown about why there is not much research done on Behcet's and particularly on the relationship of Behcet's to dentistry.

There was one study done a while back on Sickle Cell Anemia and pulpal necrosis. It was done by some doctors in Turkey. I emailed him and said that he is trying to do a similar study with Behcet's. (Behcet's is many times over more common in Turkey than in the US) He had recently changed universities where he is working and is trying to talk them into getting the necessary equipment. But it sounded like it will be quite a way in the future. The lack of research on this has several reasons.
1.Behcet's is rare. There not that much research done on the disease in general. It is hard to get a large population and there is not much money in it. Orphan diseases have a hard time getting funding.
2. Physicians don't work with dentists in research much. Recently that gap has started to be filled with the heart disease, stroke and periodontal health connection. But millions of people have perio and heart attacks and strokes are easy to get people concerned about.
3.When ever there is a new concept presented in science, medicine, or dentistry that is unproven, there is questioning and skepticism. And rightfully so. The line between a quack and a pioneer in medicine and dentistry is a fine line. But hey, the famous Mayo Clinic partly got its start from practicing that radical idea that you should wash your hands between surgeries.

I don't know if I am right or not. I just think that with the experiences that I have had that it would be well worth looking into or at least just considering and noticing what your patients with autoimmune diseases say about their teeth.
There is research out there on what is in Behcet's sores (from biopsies in the mouth, gut, genitals, skin, eyes) and also what is in periapical abscesses. Meaning what specific immune response is there. In both there are more of the gamma delta T lymphocytes as opposed to the alpha beta T cells. Gamma delta T lymphocytes make up only about 5% of the T cells. Their role is not as clearly defined as the alpha beta T lymphocytes. Embryonically, they originate from the same area as the lining of the gut, mouth, genitals, eyes and the teeth. (And also the eustachian tube and part of the inner ear where my wife has experienced some documented hearing loss. And also half of the pituitary gland, in which she has also had problems and the thyroid) In autoimmune diseases, what it is named has everything to do with what the target is that the body decides to attack. Arthritis- joints, MS- nerves, Lupus- connective tissue, Behcet's- endothelium of blood vessels, but only in certain places and smaller vessels, Wegners/Takayasu's - larger vessels. Why the certain targets is still a big mystery. But I see the target in Behcet's as all coming from the same embryological origin, of which teeth are a part of that.
There are other factors that are common to PA abscesses and Behcet's sores like Vascular endothelial growth factor (VEGF). I need to look back in my notes to remember what the others are.

Thursday, July 9, 2009

It Starts

Behcet's disease. That was my conclusion on Sept 6, 2006 for the reason for my wife's pain and varied health problems. Feb 2007 was when a Rheumatologist officially gave it that diagnosis.

I was going to use this blog to chronicle the journey of what we have learned in how to treat and hopefully beat this disease. It is now July 2009. I have been busy working on that goal but the experience has been such that I have not had the energy to share. I have learned a lot and hope to share that with others now.

I have been asked to speak at the American Behcet's Disease Association meeting in April 2010. I am a dentist with no credentials, or papers written on the subject other than that I have lived with trying to help my wife with the disease and have a mountain of research papers, notes and textbooks in my study on the subject. There has been a definite dental connection with the disease and I hope to spread the word concerning that so that dentists and patients alike can benefit from my experience.