Anyone ever been told they may have Behcet's Disease?

[sometexan84]

Anyone ever been told they may have Behcet's Disease (BD)?

And I'm not saying BD instead of ME/CFS... but rather, I'm wondering if other ME/CFS people also been told they may have BD?

 

[lenora]

Behcet's Disease sounds as if it may be in the same family tree as Sjogren's Syndrome, doesn't it? Have the two been linked at all? Yours, Lenora.

 

[sometexan84]

Behcet's Disease sounds as if it may be in the same family tree as Sjogren's Syndrome, doesn't it? Have the two been linked at all? Yours, Lenora.

Maybe, they both are autoimmune conditions w/ systemic inflammation.

They're both connected to sleep apnea, as is ME/CFS. I think BD and SS are likely linked to ME/CFS. But I don't think BD has been studied as much as other conditions.

 

[pattismith]

interestingly BD has been associated with neurologic symptoms occasionally.

BD diagnosis is clinical which is a problem.

accurate diagnosis of BD depends on clinical features. Various sets of diagnostic criteria have been published, with general agreement on the importance of mucocutaneous and ocular manifestations. The diagnostic criteria may not be met in many patients upon initial assessment because symptoms do not all appear at the same time. According to the International Study Group for Behçet’s Disease classification criteria,3 a diagnosis of BD requires recurrent oral aphthous ulcerations in combination with two of the following: genital ulcerations, skin lesions, eye lesions, or a positive pathergy test (Table 1). The International Study Group for Behçet’s Disease criteria for classification of BD has a reliable diagnostic value, reaching a sensitivity of 92% and a specificity of 97%. Minor diagnostic criteria include arthritis or arthralgia, deep vein thrombosis, subcutaneous thrombophlebitis, epididymitis, and family history, along with gastrointestinal, central nervous system (CNS), or vascular involvement.3

I had oral aphteous at a time in my life, but I realized it was from a dental past that I couldn't tolerate.... I had episcleritis once (not uveitis) but it was a reaction to a drug....And I also had monoarthritis at a time from an unknown reason...

My immune system is MBL undetectable and my CD4/CD8 is around 4 or 5.

So I happened to ask the question:
could some of us be under diagnosed BD or Sjogren because we have at the same time some tendancy to auto-immune disease associated with a weakness in the immune system. The weakness may give us a protection to some extent but produces a kind of low grade auto-immune disease that fails to be recognized and diagnosed...

https://www.emjreviews.com/neurology/article/behcets-disease-and-neuro-behcets-syndrome/

 

[lenora]

I don't envy anyone having to diagnose our many problems. I think the spinal cord and brain involvement are underdiagnosed (too much focus on inflammation) when there may be multiple problems or.....well, who knows?

Interesting that BD was found among those who travelled the Silk Road....I wonder if there is any connection between that and what has come to be known as the Chinese Disease or Chinese HIV? (Named by the people on come on here very, very worried that they're dying).

Who knew there were so many possible similarities between different illnesses. As one who suffers a multitude of neuro illnesses, even I can't sort it out and yet I get frustrated with doctors. Just treat my symptoms, that's all.

Thanks, Patti. Yours, Lenora

 

[Judee]

@godlovesatrier, I know you have mentioned sores in your mouth. Have you seen this thread?

 

[Garz]

Behcet's Disease has been reported in persons with chronic blood borne infections - bartonella in particular i think

bartonella infects the cells that line the blood vessels ( endothelial cells ) and causes ongoing inflammation there - it also triggers many different auto-immune diseases.

i mention this as i was diagnosed with CFS and had symptoms matching all the surveys of CFS symptoms on this site perfectly - including the hallmark PEM - but in my case it was cased by bartonella.
it just took years to get a diagnosis as the tests are very poor ( The tests rely on antibodies. but all these chronic infections suppress antibodies so false negatives are common).

the UK NHS has withdrawn all bartonella antibody tests in the last year or so and has yet to replace it with anything.

i am 50-60% recovered now - and steadily improving with antimicrobial treatment directed at bartonella

primer on bartonella here - by the worlds leading bartonella researcher with 30 years of peer reviewed published work - and a leading Yale educated clinician who treats it.

 

[lenora]

Well, that was interesting, including the symptoms of Bartonella. Perhaps all of us should be advised to see a disease specialist as well as other (more common) tests.

After suffering with this for well over 40 years, that may be my next stop (when and if I can even find it in myself to continue looking for a cause).

The thing that really did it was that I have had all of those symptoms...lived with swollen lympth glands for years and then one day they were gone,....just gone.

Thanks for sending this info in Garz, especially since I'm now 76 and definitely not improving. But you know what? You just plain get tired of looking for answers, showing up for tests and lethargy can take over. I would encourage younger people to keep digging away and try to keep track of all records.
Yours, Lenora

We had a cat probably over 50 years ago, but wild animals do visit our back garden. L.

 

[Garz]

After suffering with this for well over 40 years, that may be my next stop (when and if I can even find it in myself to continue looking for a cause).

People have recovered completely after decades of illness - so if it is your issue it could well be worth pursuing

also bear in mind that the disease can appear to be static - but often is doing damage in the background and new symptoms / health issues that it causes can pop up at any time - the list of these is very long indeed - and is usually attributed to something else -like Behcet's Disease - or we are told its "just something that happens to some people as we get older"

also be aware - ID doctors are generally ignorant about emerging zoonotic diseases like bartonella - the best ones flat out state they don't have good tests for bartonella and without a positive test they cannot treat you - the rest just gaslight you - so you really need a Lyme literate Medical Doctor - or bartonella specialist - like the second guy in the video.

Testing is problematic as mentioned - its really tricky to detect - but there are now newer tests:

-Igenex has a new multispecies bartonella immunoblot test which detects many antibodies to multiple bartonella species - so has much better chances of detecting bartonella than standard ELISA single antigen tests

-Galaxy diagnostics - has the best test yet - DD-ePCR - they use 3 separate blood draws - then culture to increase the numbers of bacteria in the sample - then PCR on that to make the test sensitive enough - this test is pricey though.

i found it by thin blood smear with Giemsa stain at 1000x under oil - Bartonella has a very specific signature that no other pathogen does - no other known pathogen or condition creates these rings of pale vacuoles inside the red blood cells - so it is definitive - but it was a lot of work - it is not uniformly spread or common in the blood - only evident in occasional clumps of infected cells - most slides are negative even in sick people.

(i have considered setting up a small test lab to provide this test as a service - but i am not quite up to it just yet )

lastly - if you have more questions - or just want to compare experiences with other people - there is a good support group here https://www.healingwell.com/community/default.aspx?f=30

i am active there - so drop by to say hi 🙋‍♂️

i hope its of some help - all the very best

 

[lenora]

Well, thanks for the info. I had heard of Behcet's Disease long ago, but never really looked into it. My neuro at that time, would have listened. The two I've had since his death....no chance, and I'm just beyond trying any longer.

That's why I encourage people to keep trying when they're younger. One usually has to go through the recommendations of others, but isn't that best anyway?

Whatever you do, please don't break your hip or fall and end up with pelvic fractures. Things are just never the same. Also, you're never as tall again. Right now, I'm just a grumbling old gal! Thanks! Yours, Lenora

 

[pattismith]

I am convinced that for a subset of ME/CFS patients, their ME/CFS is produced by Behcet.
Behcet is often triggered by virus or bacteria like ME/CFS...

(Fibromyalgia is also found frequently in Behcet, up to 35% of BD patients have it)

Patients with Behçet's disease frequently present psychiatric and cognitive symptoms, independently of any visible damage on imaging.

Of 20 patients included (M/F: 16/4, median age 38 years [30–45.5]),
5 (25%) had an abnormal brain MRI.
Eight patients (42.1%) had a so-called “psychopathological” profile according to the SCL-90R, the presence of which was correlated with an impaired quality of life (7/9 dimensions of the SF36) and more intense fatigue.

https://www.sciencedirect.com/science/article/abs/pii/S0035378723004356
https://journals.sagepub.com/doi/full/10.1177/20494637231198200