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Could it be Behcet's Disease?

merylg

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
justy said:
Mouth ulcers here too as a child and teenager - once so severe my whole mouth and lips were covered overnight. I also had constant severe conjuctivitis as a child. Still get occasional mout ulcers now, and like Meryl the nose ulcers too. Not sure if i have any of the other symptoms though.

I hope you get some answers from your rheumy soon - he seems very keen to consider a proper diagnosis - whilst here in the UK cant get anyone interested in anything.

All the best, Justy x
Click to expand...
Hi justy...the heaps of mouth ulcers at once is one of the classic features. It has taken years of visits with worsening symptoms, to many specialists across lots of disciplines to get to this point...and hospital admissions etc etc so it hasn't just happened now...but I am pushing to get a diagnosis to have some idea what I am really up against & to be able to tell my brothers, my other relatives & my children so they can understand in future if it happens to them. Especially the liver issues I am having seem to run in my family. Behcet's is a rare disease...so not on anyone's radar. Only a few paragraphs written here or there. Even less about it on Australian sites. (Maybe it's not as rare as they think!!!) Sorry it's hard to get help there Justy. I wish I knew 20yrs ago what I am finding out now.
 
merylg

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
Marlène said:
Different phases (I, II, III) and treatment (traditional and with supplements) of Behcet's explained

http://www.angelfire.com/ma/Behcetbook/shapiro.html
Behcet's Disease: Immune Process and the Potential Impact of
Nutritional Supplementation and Pharmaco-Nutrition


Example:
In one study (Niwa et al 1985), patients showing an increase in neutrophil active oxygen generation, including those with Behcet's, rheumatoid arthritis, Crohn's disease, and progressive systematic sclerosis, were treated with injections of liposomal superoxide dismutase (SOD), 2.5 mg twice a week. There was a marked reduction in 12 out of 16 patients with active Behcet's disease, with particular effectiveness against intestinal manifestations. Remission rates in other diseases were 7 out of 8 mucocutaneous lymphnode syndrome / Kawasaki disease, 3 of 5 dermatitis herpetiformis, IgA linear bullous dermatosis or severe cement dermatosis, 4 out of 9 severe and active rheumatoid arthritis, 3 out of 3 PSS, 4 out of 4 Crohn's disease, 3 out of 4 colitis ulcerosa, and 2 out of 2 unresponsive (hemolytic) anemia. Several terminal-stage PSS patients showed dramatic improvement. The researchers reported no toxicity from liposomal SOD, which had various advantages compared to free SOD preparations.
Click to expand...

I think Kawasaki Disease looks like a childhood version of Behcet's Disease...just my 2 cents worth! That treatment sounds good. Thanks for sharing!
 
justy

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I wonder in what way the SuperOxide dismutase is easing the symptoms of these diseases. I have a blockage on my Mn SODase Gene - which is probably why i have such a high cell free DNA result - i have a big problem with not having enough antioxidants, and i think thats why B12 injections have helped.

Is it possible to buy this Liposomal supplement?
Justy
 
Marlène

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
hello justy

it is mentioned in the document. If you do a search (Edit -Find) with 'liposomal', it should point you to it.

And here is the result:

Superoxide Dismutase and Catalase
The best success has been reported with injections of liposomal-encapsulated SOD. But due to the cost and our desire to avoid injections, we have to look to an oral source. But oral supplements are said to be completely destroyed in the intestines. There is a sub-lingual lozenge available, which would send free SOD more directly into the blood stream, but the dosage is very low.
There is a product manufactured by a company called Biotec which is supposed to increase the body's production of SOD, catalase, and GSH-Px. The tablets, called "Cell-Guard", contain a concentrate of genetically-engineered wheat sprouts, and are marketed as the best alternative to injections. Literature from Biotec describes the results of several studies on which they base their claims. The first is a study of the effect of the Biotec tablets on the erythrocyte SOD levels of ten healthy, elderly subjects. After about two weeks, the subjects showed an average 230% increase in erythrocyte SOD levels; the minimum increase was 32%, the greatest 730%. Six tablets were taken daily upon rising, one hour before breakfast, for the first two weeks, three daily for the second two weeks.
Another study showed increases in serum SOD levels averaging 40%, increase in catalase 60%, and serum glutathione peroxidase up 78% in the age range 41-50. Placebos showed virtually no increase. The company literature also cited more subjective studies indicating reduction of pain and increase in overall feeling of well-being among almost all customers surveyed by participating physicians.
Since we have no other good oral means of improving SOD levels and catalase levels, this "Cell-Guard" product seems worth trying. Take according to directions, which is upon waking and an hour before eating the first meal. Eight glasses of water per day is important.
 
Marlène

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
Treatment for mouth ulcers:

http://www.drpaulose.com/general/mouth-ulcers-apthous-ulcers-an-effective-treatment

Riboblavine (B2) in very high dose.20 mg three times a day for a month or two may do wonders

or

Your doctor can do this:
The procedure is simple: Spray the area with 4% lignocaine, wet the tip of the stick and gently touch it to the ulcer. When the ulcer turns white, remove the stick. Have patients swish out the silver nitrate and send them home.
...The silver nitrate cause minor burn at the ulcer base and destroys the nerve endings causing pain relief and also promotes healing by granulation.
 
merylg

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
Marlène said:
Treatment for mouth ulcers:

http://www.drpaulose.com/general/mouth-ulcers-apthous-ulcers-an-effective-treatment

Riboblavine (B2) in very high dose.20 mg three times a day for a month or two may do wonders

or

Your doctor can do this:
The procedure is simple: Spray the area with 4% lignocaine, wet the tip of the stick and gently touch it to the ulcer. When the ulcer turns white, remove the stick. Have patients swish out the silver nitrate and send them home.
...The silver nitrate cause minor burn at the ulcer base and destroys the nerve endings causing pain relief and also promotes healing by granulation.
Click to expand...
Hi Marlene,
Thanks for all this. Yes I think all the B2 Riboflavin I have been taking over last year or so on Dog Person's (Christine's) advice has helped prevent me from getting mouth ulcers.

B2 (as a preventative) was also the only successful migraine treatment I ever tried, out of about 10 that the Neuro offered me.

I recently tried Sumatriptan again (Prescribed by GP). It swelled my brain & did not help :ill:

I also tried Tramadol...acts like an opioid. Helps but nauseates & has other side effects. Not a great option.

Avoiding triggers...foods, stress, allergies, weather extremes...helps but is not always possible.

With regard to SOD products there are two Biotec "Cell-Guard" supplements that iherb sells. I wonder which is best? There is also a NOW brand SOD product too.
 
merylg

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
http://www.hindawi.com/journals/pri/2012/209316/

"In the last two decades, extensive studies have been conducted to reveal the nature of BD. In the light of these studies, BD is now recognized as a chronic, multisystemic vasculitis [2, 5–7]. Whether this vasculitis is a result of autoimmunity is controversial [2, 3], but there is increasing evidence indicating the possible role of immunologic mechanisms in the pathogenesis. Evaluation of lesion-free skin and mucocutaneous lesions of patients with BD patients by DIF reveals immunoreactant deposits on the vessel walls [8–11]. Also, elevated serum levels of several proinflammatory cytokines (IL-1, IL-4, IL-6, TNF-α, etc.) have been reported in these patients [12]. A special subgroup of T lymphocytes (γδ T lymphocytes), which play an important role in mucosal immunity, are found to be present in the increased numbers in circulation and mucosal lesions of patients [13]. Several research groups found out that cultured γδ T lymphocyte cells proliferate when stimulated with mycobacterial heat shock proteins and products of several oral pathogen microorganisms [13, 14]."....................

"Considering available information, it is no surprise that most of the working hypotheses for the BD pathogenesis point out an external factor (an infectious or regional pathogen, i.e., Parvovirus B19 [20], Helicobacter pylori [21], Streptococcus sanguis [22], etc.). This factor probably stimulates an abnormal immune reaction, during which certain types of lymphocytes are stimulated and neutrophils reach a hyperreactive state in the people with a genetic predisposition. Diagnosis of BD depends on the presence of several clinical findings. These findings are defined by the International Study Group (ISG) of Behçet’s Disease and published in 1990 [23] (Table 1). Major weak points of ISG criteria are the occasional long intervals between manifestations of mucocutaneous lesions with the diagnostic value and lack of their specificity. Similar lesions may manifest in an extensive number of diseases (e.g., papulopustular lesions, erythema nodosum). Knowledge of histopathological features of BD mucocutaneous lesions may be beneficial for differential and early diagnosis."

Özgür Gündüz, “Histopathological Evaluation of Behçet's Disease and Identification of New Skin Lesions,” Pathology Research International, vol. 2012, Article ID 209316, 7 pages, 2012. doi:10.1155/2012/209316
 
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