Sarcoidosis

[Credeur,Chase]

Ok I am a white male (34) currently in the army. I was diag. w/ sarc about 3-4 yrs ago. I was in basic when i came dome w/ Broncitius. I did not go and be scene for it for 1 mth. After I was scene I was put in the hospitalfor 1 day. Well I continued through basic, AIT, and Airborne school after I got here to Ft Bragg is when i started show symptoms. The biggest is my shortness of breath, fatigue, get sick easy, sinuitus, ringing in my ears, hands swelling, after trying to run a short distance lung fill like ice and the diaphram is constricting, IBS, floaters in the eyes, granulomas w/ scaring, sleep apnixa, that is about all i can think of so far. Well after dealing with a Army pulminalogist and several PFT's and Bronceal biopsy I was told i have SARC. Well I keep telling the Dr about my cold lungs and he blows it off like i am lieing to him. I am now forgoing a medical removal from the army is all of what i have described still detailing of SARC. Should I go out on my own and try to find a Dx that is a specialist in SARC for a better treatment of my SARC. Is there any SARC specialests here in North Carolina close to Fayetteville?

[Davy9]

It is hard to understand exactly what your situation is. You are diagnosed with sarcoidosis and are still on active duty in the US Army and not pleased with the medical treatment you are receiving. Does that sound about right?

Although I am not familiar with medical care in the service I am a little surprised that they did not discharge you on a medical because of the diagnosis and the constellation of symptoms you describe. I also believe that medical care in the service is not ideally geared towards treating this type of disease and you should be able to do better in the private sector.

I do not know the Fayetteville area but there is a national sarcoid foundation where you should be able to find a medical resource anywhere in the country. Certainly any university medical center should have pulmonary specialists competent in the treatment of sarcoid. You may be able to locate a university medical center associated with a veterans hospital or clinic such as Loma Linda Medical Center in San Bernardino, California and the nearby Pettis (?) Veterans Hospital.

[Credeur,Chase]

According to the DX he says that my sarcoid is basically in remission or non-active. the scaring level i really dont know how bad it is. but what really has me concerned is this filling that my lungs are always cold and gets worst during physical exertion such as running. my PFT's come back norm though. Have you ever heard of this condition in any other pt's?

[Davy9]

I have not heard of the sensation you describe but I am not at all an expert on sarcoid. I can advance some facts about lungs and temperature control.

The lungs are in very close contact with a lot of blood and the bodies core temperature. As such they are physiologically designed to not provide access to cooling the body down. When room air is inspired it can be quite cold but it is usually warmed up to body temp by the time it reaches the gas exchange areas. It is often warmed up to core temp before reaching the major airways. Obviously you do not usually breath in extremely cold air so your lungs should be quite adequately warmed. This is also shown with your normal pulmonary function tests. You can also measure the temp of your exhaled gas using a simple fast acting thermistor. If you easily keep a normal body temp then I suspect that your lungs are not cold. If they were cold you would lose core temperature.

So the reality of you actually having 'cold' lungs versus just the feeling sensation is your quandary and it would seem that it is more likely just a sensation if all else is normal.

[Davy9]

I have talked around about your situation and wanted to share what I have learned. Many feel that you may be suffering from a neuropathy that might be related to the sarcoid or from its treatment. It might be this neuropathy that is giving you the sensory sensation of coldness. Whether its location can be pinpointed or the condition treated is not clear. Bounce this off your doctors and see what they say.

[itsmejms]

There are a couple of things you can look into. One is the Marshall Protocol which you can find by searching the Internet. Another is to consider having some testing done to see if you might have Lyme disease as an underlying cause for the sarcoid. I have had Lyme for years and done a lot of research on it. There is only one lab in the U.S. that has the updated sensitive equipment to test for Lyme and you can find out about them at www.Igenex.com . For the record I do not have any financial interest or connection to either the Marshall Protocol or Igenex.

The Lyme and it's co-infections like Babesia or Bartonella can cause the chronic fatigue and many of the other symptoms you list. It can have neurological effects as well.

I am not sure what to say about the cold feeling in your lungs but the nerve connection sounds plausible.