Behcet's Syndrome Society

Behcet's and pulmonary problems

Hi Everyone,

My name is Cindy and I am new here.

I see many posts about Behcet's and breathing problems.

I don't know if this will help anyone - or not... I hope so.

Please remember, I am not a doctor. I am a patient, just like all of you. So, ask your doctor if ANY "treatments", you may see here, or on other sites, are right for YOU and IF you can take any "remedies" or "medications" mentioned on ANY web-site. We are all on our own "Drug Soup", and our doctors need to check for interactions and toxicity.)

Behcet's sometimes comes with elevated "Homocystestine" levels and can cause "Hypoxia".

I was tested for the genetic diseases: Alpha One Antitriptisin , Hyperhomocystei

nemia and Hemochromatosis (Iron Overload)

I HAVE ALL THREE! And both above can cause BREATHING PROBLEMS. (Alpha One can also cause Liver problems. I did not get a GENE POOL, I got a CESS POOL!)

They MUST be detected and treated. If your tests are positive - With the Vitamins B-Complex and Folic Acid for the Homocysteiemnia , and Infusions of enzymes for the Alpha One. Alpha One causes "Genetic Enphazema" and Cirosis of the liver.

I suggest looking up the symptoms, (and spellings), to see if you and your family history matches the symptoms.

A simple blood test can be done first, to see if it indicates further testing. It can save the cost of a gene test you may not need. My doctors finally tested me so I would sit down and shut up. Wow! Were they surprised with the POSSITIVE results for BOTH. Plus "Hemochromatosis" an Iron over load disease.

I have had two Pulmonary Embolisms (Blood Clots formed IN the lungs) Asthma, Enphasema, Hypoxia and more.

My oxygen was dropping to 70 % at night, I "flunked" the 6 minute quick walk test, twice, and now have portable oxygen. And all night, too. It does help my energy level.

(Please excuse any Misspellings. I have Progressive, Neuro-Behcet's and the White Matter Dementia has hit me hard. Not being able to spell words I know, is the least of it. Plus, Permanent Blurred, Double vision, and to darned exhausted to get a dictionary!)

As for breathing and Flares after shots for Flu, Pneumonia and other vaccines - watch you "Neutrophil" levels in your "C.B.C.", (Complete Blood Count). If it is ELEVATED - You are IN a "Flare", or are about to have one. I wait until mine is down before I get ANY shots. I also watch for Barometric Pressure changes because drops in it affect me - I go "Belly Up in my RECLINER"! So I prepare for it by preparing food I can Microwave, do laundry, stock up on groceries, etc. I crave Chili! It has natural anti inflammatory properties in it called "Capsasin"

I hope any or all of this information benefits some of you.


Central California, USA

1 Reply

Thanks for posting that information Cindy and hope it will help someone. Good luck to you with your treatment.


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