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June 24, 1997 - T. Falkenberg I am a 31 year old white male living in Copenhagen. I have had sarcoidosis for 5 years now and have problems with lungs, eyes and skin. The real problem for me is that the doctors gave me prednisone for too long. In Denmark there are no organizations for sarcoidosis so I have been alone with it for 5 years. It is nice to read all your letters. The reason why I wrote is to let you know that you are not alone in the world with Sarcoidosis. There are lots of cases in Scandinavia too. Today I will try Chinese acupuncture for the first time and I will let you know how it works.
June 20, 1997 - Lauri Thanks for all the help you have given me in understanding sarcoid. I know I have had the disease for many years, but it never was correctly diagnosed. I always was told I had allergies (which I do) and asthma (which I also have), but these didn't explain all the symptoms I had. Did any of you get told "It's all in your head". I guess more doctors need to be informed about sarcoid. I appreciate reading your comments. I don't like living with the disease, but it helps to hear what the rest of you are going through. I wish we had answers to getting well. I know how much it helps to have faith, and I hope all of you can find a basis in faith. It has helped me more than anything else. When I'm going through some of the nasty tests, or feeling alone, faith holds me together. While it helps to hear what others are going through, it would be much more helpful to say we had a cure, or found something that would help. In the meantime, we'll just have to support each other.
June 17, 1997 - Navy Men On Carriers Have Higher Lung Ailment Risk Enlisted Navy men assigned to aircraft carriers had an increased risk of developing a mysterious illness that often attacks the lungs, federal health officials said Thursday. The Centers for Disease Control and Prevention said it had found a "small, but statistically significant" increase in cases of sarcoidosis among Navy men who had served on aircraft carriers. Sarcoidosis is most frequently found in the lungs, but it can attack any organ of the body. It can cause lung stiffness and loss of lung volume.
June 15, 1997 - A. K. King Hello Friends. I'm very glad this website exists. Until I stumbled onto it, I was not taking sarcoidosis serious. Even though I know people who have died from complications due to this disease and I know people who push carts of oxygen around in order to breathe and one of my cousins has it, I still discounted what happened to all of them. I felt I could beat sarcoidosis whenever I put my mind to it because I wasn't taking steroids. Your many letters and questions have shook me. My previous letter (June 7, 1997) did not make it clear that this disease hit me again five years ago. I have been doing my macrobiotic herbal thing but I have not been strict enough. In order to be 'social' with friends, family, and my girlfriend I would eat a little chicken or fish, drink a glass of wine, stay up late, and have some coffee to get through the day. All of these things are counter productive to my cleaning out my system and doing those things necessary for my body to be strong enough to heal itself. That is the purpose of the holistic method of treating a medical problem. Holistic practitioners teach you how to heal yourselves. It is not my intent to give anyone false hopes. My victory is not unconditionally guaranteed. I have gotten on track. I will fight the good fight and I will do everything possible to cure myself. Steroids and treating the various symptoms just are not part of the program. To C. Parsons, read up on steroids. Dr. Weil may not sound credible to you now but there is no one who can give you a guarantee that any steroid treatment will or has cured anyone of sarcoid. Every doctor will guarantee deleterious side effects from steroids. I wish there were things I could recommend to cure us but I can't in good conscience attempt to do that. We must remember all of us may have sarcoid but sarcoid is hitting us all in different places and in different intensity. I will tell you what I take to improve my energy. For increased muscle energy, I take Super COQ 10 50 mg. caps. 3 x day. For cell renewal, I take Sun Chlorella A. It comes in tablet and powdered form. The directions are on the package. I also take Solgar VM-75. This is a multivitamin that has amino acids and antioxidents. These items are for ENERGY NOT HEALING. Please consult a doctor to find the correct herb to directly aid your body. Oh yeah, since it seems to matter, I'm a 46 year old Afican-American male. When this first hit me back in the 80's the doctors told me it was a disease usually found in elderly white women with a history of arthritis. Now some of you say it's mainly found in the Black community. For those of us who have it, to talk about racial statistics seems to border on lunatic behavior. Sarcoidosis attacks every race, gender, age, and income level. One of my friends put it best. He said, "It sounds like the environment is killing you." This is not a mystery disease.
June 9, 1997 - C. Parsons My husband was diagnosed with Sarcoid about 2 years ago, and is currently taking Prednisone. Lately, however, he has been exploring some alternative therapies as well. He has radically changed his diet, eliminating most animal based foods, and has been doing yoga, meditation, and of course exercise. He feels really good about the changes he has made, but I am wondering if anyone has any feedback on alternative therapies for Sarcoid. We've been reading some of what Dr. Andrew Weil has said about the drug Prednisone..."Steroids cause allergies and inflammation to disappear as if by magic. In fact, the magic is nothing other than direct suppression of immune function. I have no objection to giving these strong drugs for very severe or life-threatening problems, but even then I think they should be limited to short-term use: no more than two to three weeks. I deplore prescription of steroids for illnesses of mild or moderate severity or for months and years at a time. Steroids are terribly toxic, cause dependence, suppress rather than cure disease, and reduce the chance of healing by natural methods of treatment. Moreover, they weaken immunity." Does anyone have any comment on this? Has anyone beat Sarcoid using holistic approaches to healing, or has anyone successfully combined the use of prednisone with alternative therapies? It is easy for Dr. Weil to damn predisone, but 2-3 weeks seems pretty unrealistic to me for most Sarcoid sufferers. Maybe he just doesn't know about Sarcoid? I am just so baffled!
D. Dougherty I am a 29 year old white male in the final stages of diagnosis for Sarcoid. The initial symptoms appeared about six weeks ago and my family doctor told me that I might have Lymphoma which scared the hell out of me. I am to undergo a biopsy of the lungs on Wednesday and don't know what to expect from the procedure. Does it seem normal to wait this long for a diagnosis? Are my lungs being permanently damaged by the delay in treatment? Any help with these questions would be appreciated. Are there other sources on the internet or information?
June 7, 1997 - A. King I was first diagnosed with sarcoid in 1984. My saliva glands and the tear ducts that provide lubrication for my eyes were clogged up. I went to many medical doctors. They could only treat the symptoms not the disease itself. As a matter of fact every doctor I went to gave my problem a different name. After a year of chewing gum constantly and using eyedrops plus putting lubricating inserts behind my eyeballs, I went to a M.D. who was a holistic practitioner. She tailored a macrobiotic diet especially for my weaknesses. I had been a vegetarian since '76 so following the Macrobiotic diet wasn't hard. I also meditated, did light exercises, took the herbs and vitamins as she directed me and did all I could to remove stressfull people and situations from my life. The sarcoid went into remission in six months. I never took prednisone. The side effects sounded too extreme for me to handle. Well, this is not an all-American success story yet. This most annoying disease has come back. This time it's in my lungs and it's harder to get rid of. I had gotten away from my strict macrobiotic diet and exercise regimen which I feel weakened me so when I was in a very stressfull life situation sarcoidosis was able to affect me again. My old holistic doctor has left the state so I'm looking for a new one. I know all of you are seeing medical doctors and I wish you luck. I have not had the problems prednisone and other drugs have caused in your bodies. I have to quit writing now as you see I'm kind of long winded when no one can stop me. Post a reply or e-mail me. It is most important for everyone to understand that I am not now nor will I ever recommend that people stop taking medicine and do like I am doing. Steroids would never work for me in my life. I am merely letting you all know that there is another way to kick sarcoid in the butt. Search for ways to strengthen your body so that it can help the medicine fight this disease.
May 24, 1997 - Vicki Hi everyone. Just wondering does anyone know what correlation, if any, there is between Lupus & Sarcoid? One of our members mentioned in her comments that she was taking Methotrexate. She also said that Methotrexate is an antineoplastic (anti-tumor) drug & that its used to treat some cancers, rheumatoid arthritis & other diseases like lupus, and without side effects associated w/steriods. This is just dawning on me how great an alternative this drug seems to be. How come more of us aren't hearing about it? [Editor's Comment: Methotrexate is an extremely dangerous drug with a high possibility of serious toxic reactions. It has been known to cause death. It is used only as a treatment of otherwise fatal diseases such as tumors or as a last resort for treatment of psoriosis or rheumatoid arthritis. It is so dangerous that doctors have to be specially licensed to use it.] How come use of Predisone is so very prevalant? Is there something I am missing? Also have you all heard about another granulomas called Wegener's Granulmomatosis? Found it mentioned on http://www.mic.ki.se/Diseases/c8.html. Do any of you have this form of granulomas? If so is it treated the same as regular sarcoid granulomas? Very interested in what you all have to say about all of this. Let me know. How is everyone? Are you all still out there? Going to my first Sarcoid support group meeting next month; local chapter of American Lung Association told me about it. Hope to find fellow sarcoides & chat it up. Just wanted to share some information on alternative treatments I've found to offset the effects of sarcoid. Its all herbal. The herb information itself comes from a great book "The Complete Medicinal Herbal" by Penelope Ody published by DK. Local Price Club/Costco sells it for $14.99. The following are what I've found useful: Devil's Claw (Anti-inflammatory - use 9 weeks then off 2); Feverfew (Headaches - avoid if using warfarin, eating leaves could cause mouth ulcers); Valerian (Tranquilizer - could cause overexcitedness; try small dose 1st); Wild Cherry (cough suppressant - could become drowsy, AVOID IN ACUTE INFECTIONS). I've found that I can take these herbs more often than the traditional drugs and the herbs usually last as long as the traditonal drug. All of the herbs are available at health stores in both liquid and gelatin capsules. They are reasonably priced $5.50 to $9.00 for the ones I've used. (The liquids usually contain 12-15% alcohol; just so you know.) I've always mentioned my herbal usage to my doctors, some say nothing more & others are ok with it and have discussed precautions with me. So please talk to your doctor before you try any of these herbs. I hope this helps some of you. Thinking of you all.
May 23, 1997 - Greg Please help me as I have "granulomas" on a previous scar from childhood, and my knees have these long lesions. I was told that I have Sarcoidosis from a biopsy and am getting very worried. I just had chest x-rays, and a ton of other tests performed and am waiting results. I have always had problems with my chest, yet passed it off to city smog. I ache most of the time, have had anxiety for many years and am always tired. I am in good physical shape, and very confused. The "granulomas" started about seven months ago and are getting larger. Do the marks on my knees and arm reflect that something is going on inside the body? Please contact me if you have experienced anything like this.
Lonnie I was so glad to find a site that talks about this sarcoidosis malady that I couldn't help but get excited. Living in a little rural town in Utah, I do not have much access to big city expertise, and I have now had to live with this for years. I teach high school, and I thank the Lord daily that I have been able to continue in my position. I first learned about my having sarcoidosis about 3 years ago. (I am a white male, 44 years old.) I had pockets of granulomas in my stomach--and a series of biopsies led to the diagnosis. Do any of the rest of you have stomach concerns? My doctor refuses to let me use prednisone with my stomach troubles. I have trouble with my lungs, my eyes, and my fingers, and toes' tips. Those who say it doesn't hurt never had it. Let's all pray someone figures out what causes sarcoidosis.
May 21, 1997 - Pat Riley Sarcoid-Who? That was my reaction in 1980 when I was diagnosed with this disease; the etiology is unknown, and I’ve got it! Moreover, you don’t know where it came from or how to cure it, and to top it off they misspelled it. "I DON’T THINK SO!!" Well, I’ve got it. So after about two or three weeks of dealing with both my diagnosis and prognosis, I had to do a reality check on myself and decide whether or not I was just going to shut down and let this thing overtake me, or was I going to find out what was going on in my body. Well, my first reaction was, the doctors don’t know what they were talking about, "they have to be out of their minds, and furthermore, he’s too old to be a doctor anyway. If they know so much why didn’t they catch this thing in the beginning? Why did they keep misdiagnosing it; they make me sick; all they want is my money;" on and on I went. "And another thing, who thought up that name in the first place?" No one had a clue. The reality of it was that if it had not been for a more seasoned doctor who researched until he figured it out, I might not be here today. So to him, I am eternally grateful. If you don’t come to terms with this disease, it can be very serious and complicated. Even the pressure of writing this article can send me into a tailspin, if I’m not careful (just kidding). What I’m trying to say is that I can now deal with this illness. This disease is very serious, but it does not have to be a death sentence and you don’t have to be afraid. You just have to recognize that this is a challenge in your life and deal with it. Don’t let this condition take control of you. You must learn to take back the control of your life and start to live the way you desire. Only now you have to recognize your limitations. One of the first things I had to do was change my attitude about life in general. You see, when you appear to be generally healthy, you have a tendency to take a lot of things for granted. Let me suggest that we no longer do that. Let’s stop trying to figure out why we have this disease. Stop thinking that you are being punished for something and there is really no sense in asking yourself why me? Why me? You will never get an answer. Stop beating yourself up; we have enough insensitive people in the world to do that for you. Sarcoid is an equal opportunity disease. I say that I because it can attack any ethnic group, or any organ it chooses. We must learn to recognize what the symptoms are, which may eliminate a lot of unnecessary trips to the doctor. Sarcoid can be easily misdiagnosed and mistreated. Once you start to recognize the symptoms you will be able to say to your doctor that your sarcoid is flaring up. Then the right tests can be performed immediately and the correct medication prescribed instead of sending you home with treatments for the flue or other common conditions. One of the things I do is continue to educate myself regarding the causes of sarcoidosis and its effects on my body. May I suggest that if you do not have one, get yourself a journal so that you can track your symptoms and monitor your sarcoid. A journal can also be very therapeutic. I write everything in my journal from treatments, longevity of remission, and most importantly, my emotional state. I am sure you all know that prednisone can have your hormones bounding off the walls. Keeping a journal helps me to "get a hold of myself!" then, periodically go back and read what you have written; you will be surprised at some of the things that are really going on inside of you. Let’s talk about our friend Prednisone. I call it my He-Man medication, Prednisone doesn’t cure Sarcoidosis. It only puts it into remission, but it sure does make you feel good and gives you lots of energy. The problem is you cannot stay on prednisone for long periods of time because of the side effects. Oh, and what about everything you eat "slipping through your lips and then sticks to your hips" (sorry girls, it is just one of those unavoidable side effects, but not to fret, it goes away). The only thing that angered me was the doctors did not inform me about the significant weight gain. All they said was that you will develop a moon shaped face. They did not tell me my whole body would become the meteorite that would house the moon. The two medications that I use are Prednisone and a cough suppressant, and if bronchitis occurs an antibiotic. When I am not on prednisone, I try to take a natural herb to build my immune system and now I am trying melatonin. I have read some literature on this natural hormone and they are having good results with it. I also try to get lots of rest and the most important thing is to try and keep my stress level down or else you will be in trouble all the time. Stress triggers sarcoid quicker than anything. Know any toxic people? Stay away from them. Educate your family so that they can love you through the good times and the bad. Here are some of the symptoms that I have experienced, which were all triggered by my sarcoidosis: Sinusitis, collapsed lung (had surgery), bronchitis, kidney stones, lesions on the lower part of my legs, weight gain and loss, persistent cough, joint pain, labored breathing and I am presently on oxygen therapy. All of the above were triggered by sarcoidosis. Otherwise, I am healthy. All of the conditions were mis-diagnosed and treated inappropriately. So start your journal today. Your journal will allow you the freedom to write down how you really feel (anger, guilt anxiety, etc.). Write it down, get it out of your system! Now I have got to go! How many of you have a relationship with God? I think I have read about 15 personal articles and not one have mentioned prayer. I need to tell you that prayer changes things. God cares for you. He is not punishing you, that is not His style! Open up those lines of communication and see what happens. This is the voice of a person who has first-hand experience and I am a living testimony as to what God can and will do, but only if you let him. Listen, without God, the healing cannot begin because not only does the physical have to be healed, but your spirit has to be healed as well (your spirit will help you to bare your infirmities). God says to lay all your cares on Him and I say why not? Especially if you have tried everything else. Try Him, let me know what happens (smile). Well, I have said just about all that I could say for now. Know that there are worse things that could happen to you other than sarcoidosis. I have come to learn not to take one minute for granted. I appreciate life more and I try to make everyday special n some small way. I start my day and end with prayer, thanking God for the gift of life. See ya. Feel free to contact me. This is Patricia A. Riley, 43 year old African American female and I have Sarcoidosis.
May 15, 1997 - Tred This is unbelievable. A web site on this "mysterious" disease. I go to my Pulmonary Specialist tomorrow where I think he will diagnose me with sarcoidosis. The surgeon who performed my biopsy last week basically told me the news, although he wouldn't go into any details. It seems like I've had some of the symptoms for about 7 years (swollen face, skin problems, slight vision problems) all at various times. Now I have spots on my lungs. I guess I'll get the full details tomorrow but I didn't think it was a big deal until I came across this page. I'm beginning to worry. At least there seems to be some support, if only on the web.
May 3, 1997 - Vickie I am Vickie, a 48 year old white female recently diagnosed with Sarcoidosis stage 1. I have enlarged lymph nodes, a mediastinal mass, dyspnea (which has curtailed my activity/exercise), chest pain, migraines, and elevated ACE levels. Since I am at stage 1 I won't be receiving oral steriods yet. The plan is to wait & see, with x-rays & blood tests to monitor the disease. The only new treatment I'm receiving is for my dyspnea (caused by asthma or sarcoid, they don't know which). They have me using two inhalors, one a bronchical non-steriod inhalor, and the other an oral steriod. The use of both has greatly helped my breathing problem (dyspnea). But since I know the future of this disease might require that I take oral steriods I'm interested in learning about any alternative treatments available. I've read about the Melatonin in Italy & Russian use of MW but that's all. So please if any of you have heard of or are using alterntive treatment please email me. Most of the information I have on sarcoidosis is from Internet. I read that quite a few of you are interested in more detail information. The following organizations + their web site addresses should help: National Jewish Medical and Research Center, and the Med Help International, a non-profit organization. Thanks for being here hope to hear from some of you.