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September 22, 1999 - Deborra My name is Deborra Carr and I was diagnosised with sarcoidosis in 1997. I went to the doctor because of an ear ache that lasted after getting to close to speakers at a concert. I had no symptoms of the condition but the nurse-practictioner noticed a funny sound in my lungs and referred me to the doctor who sent me to x-ray, who sent me to the hospital for further testing, etc. Needless to say, they forgot about the ear ache. No one knows how long I've had this condition but I had no symptoms and still have very few. I have read comments from others suffering from this condition and I have come to the conclusion that the reason I have few symptoms is because I have always tried to have a holistic diet. I cook from scratch, eat lots of fruit, eat very few processed foods and nothing that starts from a box or the frozen section. In order for these items to have a shelf life, they have to be inundated with preservatives, some shelf life can be years. I cook from scratch, never from boxes or the frozen food section, eat lots of fruit, stay away from processed foods, avoid sodas, sweets, alcohol and steer clear of meats and poultry with hormones. I take vitamins regularly and mainly stay away from sweets, sodas and alcohol. Sarcoid is known to attack what it perceives to be a threat to the body. One writer, a nurse, stated that we have unhealthy food particles floating throughout our system, carried by blood, and the sarcoid attacks these particles in all of our organs. I have always believed that there are so many "acceptable" levels of carcinogens and other unhealthy substances in processed foods. The more we ingest, the greater our risk of harming our systems. I would suggest that anyone with this condition try to restructure their eating habits and see if, over a period of time, this helps their symptoms. I can think of no other reason that I have no problems but have apparently carried this condition for many years. I also read a comment from someone using melantonin, said to mimic the steroids without the side effects. If I start having any symptoms, I plan to try this product before trying the steroids. For anyone with this condition, I suggest trying to modify their eating habits and see if this does not, over a time, help relieve some of their discomfort.
September 16, 1999 - Martha I'm a 40 yr old Hispanic female. I was diagnosed with Sarcoids in January, 1999. After extensive tests I was told I had the disease only in my lungs. The fact that I have this disease amazed my Doctors because according to studies this disease only affects Afro-Americans and Caucasion of European backgrounds especially Scandanavian. I would like to know more information on this disease; I have only been told it is rare. My physician just said that it is a type of lung infection that could go into remission just as it occured. From reading the comments that doesn't seem to be true.
September 08, 1999 - Alka Hi my name is Alka. I am 38 years old and was diagnosed with Sarcoidoisis in Dec, 1999. I had a bad cold and the doctor said it was nothing and would go away, but it didn't, and it just kept getting worse. Then I couldn't breathe and lost 20 lbs within 2 weeks and I kept throwing up. I couldn't control my bladder movements and was losing it. I finally went to my doctor when my legs and all my double joints started really aching. He sent me to a lung specialist who said I had to have a biopsy because I have some lumps on the tubes that lead to my lungs. He said it might be cancerous and that totally terrified me. I just had a baby and couldn't hear this. I have read this site and a few others were diagnosed after having a child. I wonder if that has anything to do with it. Anyway, I went for my operation and thank god it wasn't cancer but Sarcoidoisis. I was put on prednisone like all of you and hated it. My face always looked so swollen, and as it is I am over weight and didn't need this. Well I have stopped taking predisone the past 3 months and I am doing o.k. so far. My PFT test (lung breathing test) was good and I have to go for my eye test soon. I hope its going to be o.k. This disease really gets to you and my joints kill me; but has anyone of you got this stomach attack that happens sometimes to me? I don't know why but I get this weird pain in the middle of my stomach just above my belly button and the pain goes to my right shoulder and then runs down my arm, it lasts about 10-15 mins sometimes and then it's gone. I don't know what that is. I just lay down and try to take deep breaths and it usually goes. I hope its nothing major; if you know anything of this please email me. And for all that have this stupid disease, just hang tough and don't give in to it. We must fight it. Good luck and take care of you. Alka
August 24, 1999 - Leisa Hello everyone! I was diagnosed with sarcoidoisis a few months ago. I was pretty much asymtomatic until I discovered I had the disease. Then I noticed difficulty breathing and mild chest pain. Well, I did a little research on the internet and found a site that said that melatonin was used and cured some people. I just happen to have some in my cupboard to use for insomia. I have since taken it for approximately 2 months about three 2.5mg tablets every evening. I have absolutely no shortness of breath, no chest pain. I feel fine. I bike, run and exercise regularly. I suggest that everyone who is not taking the steroids try the melantonin. It worked for me and others. Note that it says on the package to alert your doctor if you are taken steroids. It is my theory that the melantonin mimicks the same functions of the steroids, which could cause a problem. Melantonin is a natural alternative to steroids with no side effects. Post your comments.
August 21, 1999 - Valencia Hello, My name is Valencia. I was recently told that I may have Sarcoidosis. On August 18, 1999 I had a Biospy and I am presently awaiting the results of the biospy. I would appreciate it very much if someone could inform me a little more about this sarcoidosis. My Doctor has talked to me about it, but I know that it has to be more then this. My symptoms consist of a light fever, fatigue, coughing, and shortness of breath which has caused me to be on a inhaler. Any additional information will be very helpful. I will continue to pray for us all and to pray that we all may be healed. Thank you.
August 19, 1999 - Waynette I have had sarcoidosis for years but it was not diagnoised until July, 1998. I was on Prednisone for 6 months, my lungs cleared up. After two months my breathing was worst than ever before. I was heartbroken to be told that I would have to return to the steroids. The meds ruined me in 6 months. My face was twice as large as normal, I gained 25 pounds, my legs were so swollen it hurt to walk. The good thing out of this was that I started working out everyday. No matter how much exercise I get daily, my lungs are getting worse. I get out of breath walking to my room. I had to take many breaks during water areobics and kick boxing class. I am seeing an alternative medicine person currently. I couldn't do the steroids again. I thought I would try alternative medicine now before the breathing got too bad. I would take anything to get a good breath. We are trying some treatments used in Europe. I have been taking the meds since Aug 3, 1999. I don't feel better except I have not had any headaches since. I am willing to try diet modifications or anything else (just nothing like the steroids). I just turned 34, mother of 3, caucasian female. I have this disease in my lungs, skin, lymph nodes and nervous system.
August 17, 1999 - Jenny I am a 26 year old female who has had sarcoidosis since I was diagnosed in 1992, after many months of not knowing what was the matter with me and going to many doctors just to be sent to another. I was placed in the hospital for the erthyma nodosa in my lower calves. Still not knowing what was the matter with me, doctors sent me to more specialists. After suffering from severe fatigue, stomach problems, the swelling in my calves, low grade fever (for several months), I was diagnosed with sarcoidosis. I developed anxiety from this and had to be put on meds. I have not taken any drugs to treat the sarcoidosis. And after hearing many of your stories I think I would prefer not to. Since my first occurance with this disease in 1992 I have not had a flair up like that since but a few months ago had nodules on my calves again and some shortness of breath. I'm glad that I came to this site because when I was diagnosed I was not given any information about the disease at all, just that it could reoccur at any time.
August 16, 1999 - Joe I guess I'm one of the lucky ones. I've been taking Prednisone for over 20 Years with no side effects. My dosage ranges from 10mg to 40mg every other day. I check with the my doctor every four (4) months with all kinds of tests and a yearly pulmonary test. Inspite of this good luck, I still would like to weed myself off prednisone. Sarcoidosis has affected my lungs and heart. I had a pacemaker installed back in l983 due to sarcoidosis. Other than that I've been OK. Are there any other medications other than prednisone?
August 09, 1999 - Joni I'm a thirty-six year old female diagnosed 5 months ago with sarcoidosis. I know I've had it for at least 3 years. Now I know what I have. Three years ago they biopsied my neck for cancer, but came up with nothing. But they were not looking for sarcoidosis. Two years later I came down with what they called pneumonia but none of the meds they gave worked. That was in November. Right after Easter I felt more tired and my knees and ankles also my left elbow formed nodules, red and sore. My legs from my knees down begain to swell. The areas on my ankles opened. They biopsied them and told me that I had sarcoidosis. I'm a Respitory Therapist. I asked If they they were sure I didn't get this at work. They said NO. I've been on prednisone for 4 months and am coming off as I come off I feel short of breath. They tell me it's ok, but it's not. I want to know why a healthy 36 year old person would become sick and have to feel this way. I want to know about any new treatments etc. Thanks.
July 31, 1999 - Jonathan I was diagnosed with sarcoid at the age of 18. Now I am 42 years of age and just had a recent flare-up 1 year ago. I had most of the symptoms that have been described, along with usual treatment with prednisone. But through my search for a solution, treatment, cure I fortunatly have found the cause and the appropriate treatment. The major organs that were affected were the lungs, tear glands, and skin. I also had weight loss. It surprised me to read in one of the articles in the comment section how drinking milk may have caused a flare-up. I had the same thing happen to me. This fact was told to my doctor but he ignored it. The problem is found with ineffective digestion, resulting in circulating allergens causing the immune system to respond to the unknown toxins from undigested food substances. The circulating allergens circulate to all organs by way of blood and the immune system attacks the allergens in the tissues causing an encapsulation or granuloma to prevent the spread. That is the reason I believe why this is a systemic (all body organ involement) condition. This could be the reason for the constant low grade fever, night sweats, and skin rashes, because of a constant stimulated above normal level of activity from the immune response trying to rid the body of the toxins from undigested food. This creates an environment for normal bacteria and viruses that normally inhabit the body to become angry and attack the body. And who knows how many symptoms may occur along these lines. I am a black male, registered nurse, n.d., herbalist. I have found the alternative method for sarcoid. My lungs have 90% improved, no coughing, I use a natural anti-inflamatory, resulting in no fatigue, digestion working properly, circulation improved in my extremities, skin rashes slowly fading, eye sight better, tears formation improved but not back to normal, no more chest pain, or shortness of breath, no more ankle swelling and pain, no constant urination, dehydration, anemia, no more congested liver, common bile duct, gall bladder, and most of all, I do not have to deal with the effects from steroid therapy. Oh by the way, the reason they use steroid is to decrease the activity of the immume response, to decrease the symptoms produced. In short, the cause is a disorder of the neural peptide metabolism. This results in purtrification, rancification, fermentation, of substances consumed. The toxins are absorbed in the body and are then recognized as allergens. The immune system then attacks the allergen. The toxin may be circulated to any system, organ of the body and this is the reason for multiple organ or system involment. The immune system appears to attack the body itself but it is attacking the allergens that have been absorbed by the body. Here we have an over-active immune system constantly working to rid the body of the allergen, and as a result of this you will have fevers, skin rashes, lymph nodes swelling, arthritic symptoms, small tumor or granulomas develop, swelling of the extremities, blurred vision, constipation, frequent urination, lung involvement, coughing, shortness of breath, chronic fatigue, indigestion, bloating, gas, chest pain, wheezing, numbness in the ankles. Many unusual symptoms may appear, there is no limit. The treatment is to correct the neural peptide disorder, correct the organs that are involved with pmg's, and use natural anti-inflammatory agents; there is a specific protocol. The condition takes many years to develop before you notice it.
July 15, 1999 - S.C. I had Sarcoidosis in 1985. I was admitted to the hospital; my symptoms were night sweats, and a chronic cough. I was treated and was released from the hospital. The Sarcoidosis left as quickly as it came, I went into remission for about 10 years. It was in 1995 when it came back at a different stage. This time I began to cough up blood and have a bad attack of difficulty breathing. That was scary. I am not able to return to work and the pain in my back and my leg & hip joints is unbearable. I am on prednisone and three types of inhalers. Please feel free to e-mail me.
July 08, 1999 - Iris I am awaiting the results of my lung biopsy to determine the stage of Sarcoid that I have. I wanted more info on predinisone and this article & comments appeared. It truly brought tears to my eyes to hear from others that are experiencing the same thing; that I'm not all alone. The news of this diease comes on the heels of finishing radiation therapy for breast cancer and, needless to say it very depressing. I am on an inhaler for my lungs and just started predinisone (20 mg) per day. I have initial problems with my stomach after taking it and become very moody, quick tempered as the day goes on. I'm very interested in any support group available.
July 08, 1999 - Vernon I was recently diagnosed with sarcoidosis, after many months of having the symptoms, which I thought was me being overworked. I'm a 33 yr old afro-american male who has worked hard all my life. Now I have a doctor who tells me that he has no Idea when I'll be able to go back to work. I asked what I can expect and was told that he couldn't tell me that either, it was different from person to person. I don't fear a lot of things, but this has me running scared, just because I don't know what to expect. The only thing I know for sure is I'll be extremely tired & depressed from the medication, and not sure how I'm going to feed my family. Is there anyone out there who can shine some light on this dark room?
July 02, 1999 - Kimberly My name is Kim and I was diagnosed with sarcoidosis in August, 1998. My doctor put me on Prednisone (20mg) and eventually reduced it to 10mg. As of April, 1999, my doctor took me completely off after going to 5mgs. Well as of July 1, 1999 I have had another flare-up and I am back on the 20mgs. I am a 29 year old black female who is very active. I went from a size 7 to a size 14. I am currently at a size 12. Who knows where I will go now. I have constant shortness of breath and my doctor says that no one knows where it comes from. Well, neither do I. Hopefully I will not be on prednisone for the rest of my life. I am however very grateful to God because I know it could be worse.