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December 25, 1997 - Pris My supervisor has Sarcoidosis. She had laser surgery to repair her retina last week. Her doctor is talking about chemotherapy injections. Has anyone had this done and did it help or not?
December 18, 1997 - Cheryl My daughter may have sarcoidosis in the stem of her pituitary. Sarcoidosis may be caused by mycobacterium paratuberculosis. Do you know anything about this? Do you know of any treatments for it?
December 16, 1997 - Sareena It was great finding this site on the internet. I never realized it existed. Sarcoidosis seems like such a rare disease that I find it so informative to learn some of the other conditions and medications other people with this disease are taking. I have sarcoidosis primarily on my nose. Although lesions have formed on other areas of my body the most noticeable is on my nose. I am presently seeing a dermatologist who gives me steroid injections in my nose every three weeks. These injections take a lot of the inflammation out and the swelling. I have been feeling a little tired here lately but I have not taken steroids in probably eight years. Right now the Dr. is treating my condition with placquenil. I still go for regular check-ups for my lungs, bloodwork and eyes. I guess this is just something we have to get used to. If there is anyone else suffering with the nose thing - please e-mail me. It is great to be able to discuss this condition with others.
December 14, 1997 - Bobbi Have VDTs ever been linked to Sarcoidosis, an auto-immune condition? I have this condition and it attacks the lungs as well as other organs. I am currently on Prednisone which doesn't cure.
December 13, 1997 - Atiba Hello Friends, Peace be unto you. I am not a doctor nor do I want to be a Doctor. Pete, my good buddy, don't take things so personal. Everyone can't be like you. Everyone can't be like me. I suggested integrating the medical doctor's advice with a Holistic doctor's advice. Somewhere between your recommendations and mine there is a middle ground. Most of the world exists comfortably right in that spot. Let's you and I not get into a public arguement. This is not a tabloid TV show. If you wish have a dialogue my e-mail address is listed. Your Friend, A.K. King
December 13, 1997 - Bobbi Does millimeter-wave stimulation of acupuncture points in combination with nutritional supplements work for Sarcoidosis? If so, where can I find someone in the Chicago, IL area who does it? I live in Buffalo Grove.
December 7, 1997 - P. Olsson Hi everybody. This time I will write to post some comments to a letter posted to this page by A. King, November 15, 1997. AK is writing that "The things medical doctors prescribe will never cure you of sarcoidosis". Now, I cannot imagine any medical doctor promising his patient that he will cure him from sarcoidosis, but I would not be surprised if there are a lot of quack doctors falsely promising that. AK then continues with, "Yet you continue to take the advice of doctors who give you steroids and other drugs". "Why?", AK then asks us. Now, it is obvious that AK has read at least one of my previous letters to this page. From any one of these letters AK could find out why I have decided to follow my doctors prescriptions. It is obvious that AK wants to tell us that it is o.k. to let the doctors find out that we are suffering from sarcoidosis, but if the same doctors also find that the disease has progressed to a state with symptoms, indicating severe risk for damage to body tissues and/or organs, then we should refuse to have these symptoms treated if the treatment can not cure us entirely from the disease. AK is stating, "you deserve better than you are receiving". Yes, of course we all do, but at present we have to make the best of what the medical profession can offer us to control our diseases. It is obvious that AK is speaking about sarcoidosis without having the slightest knowledge or experience in the disease. AK is writing, "The origin of sarcoidosis is hereditary and genetic", "It is a malfunction of the auto-immune system" and further, "If you check into things from this angle you will receive positive answers and positive results". Now to start with, from where in universe did AK got the false information that the origin of sarcoidosis is hereditary? No one has, so far, been able to present any evidence whatsoever in that direction. Neither is sarcoidosis a malfunction of the auto-immune system, because there is no auto-immune system in our bodies. Instead, auto-immunity is an abnormal condition/behavior of the immune-system and so far, nobody knows if this condition is the cause of the sarcoidosis or if the condition is caused by the sarcoidosis. I do not want to make this letter too long, by trying to explain to AK and others, who eventually are spreading around the same kind of misinformation and weird advice, what sarcoidosis is and is not. Excellent and easy to understand text on this subject can be found on, for instance, the following web addresses:
http://www.geocities.com/heartlandPlains/4740/sarcoid1.htm
http://www.njc.org/MSUhtml/MSU_Sarcoidosis.html
http://www.cheshire-med.com/programs/pulrehab/sarcoidosis.html
AK also asks you, "Would you feel good living like Pete", "Taking medicine for thirty years knowing you still have the disease" and "Sounds crazy to me". Now AK dig this, anybody affected by any chronic disease would of course prefer to be treated by drugs that cure the disease. In the case of sarcoidosis, as with many other diseases, there do not exist any such drugs. Instead, the medical profession is addressing their treatment to give the patient the best possibilities to continue their living with as few complications as possible, using the drugs and methods available at the time. The treatment I have got during thirty years, have so far allowed me to continue my profession and to raise five wonderful children. I also have been able, during this time, to travel around the world for business trips. In short, during these thirty years of steroid treatment, I have lived a life without any disabling problems caused by the disease or the treatment. In fact, during this time I have had far fewer sick leave days than is considered average for the Swedish population. Therefore AK, when I am looking back, I can find no reason whatsoever why thirty years ago I should have refused to treat my sarcoidosis complications and to slow down the progress of my disease and instead lead myself into a severe disabling state and possibly an early death. Finally, before AK is telling other people to discipline themselves, I think he/she should try to apply the same kind of self-thinking and not urge sick people to refute medical doctors prescriptions without presenting any proven alternatives.
December 1, 1997 - Lori I am a 38 year old woman, who has been having health problems for the past four years. I have been diagnosed with Chronic Fatigue Syndrome, Trigeminal Neuralgia, Fibrositis (Fibromyalgia) and possible Sjogrens Syndrome. I have 2 siblings who have sarcadosis of the lungs, however with no debilitating symptoms. I have been tested for just about everything but sarcodosis and when I mention my siblings having it, doctors don't think I need to be tested. I am not so sure, since finding an article re lymph node involvment. How can I get tested for sarcodosis? I've had 2 chest x-rays in the past 4 years that were normal. If anyone has suggestions please e-mail me.
November 21, 1997 - J. J. Boned A friend has been diagnosed with sarcoidosis and I am looking for information about this subject. Please, She has been during the last three years looking for information, everything you can send me will be useful. Thanks.
November 21, 1997 - Christina I am a 27 year old female. I was extremely excited when I found your web site. Both my eye doctor and internal medicine doctor say that I may have a touch of sarcoidosis but they just don't know. My blood tests and my right eye detect it and display hard evidence of sarcoidosis, but my chest x-ray and pulmonary function tests do not. I know many of the people who have written about themselves have sarcoidosis related to breathing and lungs. I was wondering if anyone out there has a form of it in their eyes. If so, I'd like to hear about it so I don't feel like the only one who hasn't had the disease affect the lungs. I have been on steroid drops for my eye but without any sign of relief. My doctors are now saying that since I haven't gotten any worse, I should wait 6 months and repeat the blood test and chest x-ray. That's fine, but my eye still continues to annoy me to no end. And to top it all off, my MDs still will not say that I actually have the disease...... how frustrating. They just don't know how to diagnose me but to say that I have symptoms of it. And to explain to my family what I'm going through not only confuses them, but myself too! Anyone have any words of wisdom? I'd really like to hear from someone who has had eye problems due to this disease.
November 20, 1997 - P. L. Ware I am a 46 year-old African American female. First onset of symptoms in April included severe joint swelling, debilitating fatigue and muscle weakness. All blood work normal...began slight tickle in throat at the end of May. By mid-June, I could not breathe or speak, suffered continual high fevers, high blood pressure and extremely rapid pulse and weight loss. Sarc was ruled out and doctors began to talk about lymphoma following a CT Scan. Surgical biopsies confirmed sarc; it's in my lymph system and one lung. Prednisone has made the difference. I also take Cardizem CD for blood pressure and potassium supplements. I have progressed from using a wheel chair and home nursing in June to working full-time (desk job) and using a cane. I continue to experience weakness in limbs (all neurological testing negative), erratic blood pressure and constant high pulse rate (80's and 90's resting pulse) Also I experience numbness or tingling in my face, mainly around my lips and chin. Sometimes numbness extends upward to include base of ears, or even higher to include eye sockets. My eyesight is occasionally blurred, and I continuously produce a sticky excretion from tear ducts. QUESTION: Is this pattern of numbness part of the sarc or part of the steroid side-effects. If anyone has experienced this symptom, please let me know where it leads. Thinning hair, occasional nose bleeds, slow healing bruises and acne also seem to be side-effects. I watch salt and sugar carefully and have not experienced any diabetes. What should I be asking my opthomologist? God bless each sufferer of this disease; prayer has helped me as much as the doctors and I ask that those of you who believe in God and the power of prayer will pray for me, too. I am trying to hold on to my career and will need to make some decisions in the next few months about my long term commitments. Thanks for this opportunity to communicate.
November 15, 1997 - A. K. King Hello Friends, Peace be unto you. When I first came across this page it was a joy to my heart. You all seemed like kindred spirits. The reality of your letters forces me to see we are not. All of you know what does not work for you. The things medical doctors prescribe will never cure you of Sarcoidosis. That is not the intent of the medicine. Yet you continue to take the advice of doctors who give you steroids and other drugs. Why? You continue to follow people who treat the symptoms instead of the cause. Why? You continue to allow non-supportive people who voice their negative opinions about you in your life. Why? You may think I'm nuts. This letter may not even make it to print but I must make the attempt to tell you how sad your letters make me feel. You deserve better than you are receiving. Find out how to strengthen your body and mind to become the complete person you once were. The origin of Sarcoidosis is hereditary and genetic. It is a malfunction of the auto-immune system. If you check into things from this angle you will receive positive answers and positive results. Can you discipline yourself? Would you feel good living like Pete? Taking medicine for thirty years knowing you still have the disease? Sounds crazy to me. Call me stupid if you like but I have not and will not take anything that doctors tell me will not cure me of a problem and will give me other problems. I recommend most strongly that you take a look into integrating the advice of your medical doctors with that of a holistic specialist. You can live free of illness if you try.
November 10, 1997 - J. Doty I was diagnosed with sarcoidosis October 1996, after an alert opthalmologist picked up the cause of my drooping eyelid as Horner's syndrome. I am not on any medication except an ACE inhibitor for hypertension. I am reading comments about spinal involvement and wonder if it is the sarcoid and not osteoarthritis that is causing my back pain and other bizarre nerve spasms. Any ideas on this? Also, how does one convince one's spouse that they are not lazy, do not have a sleep disorder, are not crazy, and that yes, I do need to see an M.D. when I feel ill, whether it's shortness of breath or irregular heartbeats, or any of the other myriad symptoms that sarcoid can produce? Frankly, I'm getting tired of being called a crock by my physician husband who really knows nothing about sarcoid and thinks that it is a benign disease that should just go away and not return. It's this attitude that makes it so difficult to even seek treatment when I feel ill, as he throws a tantrum if he discovers that I have sought medical care or advice. Any ideas? I do my best to keep healthy. I swim 2200 yards 4x per week, some walking and cycling. I also try to eat properly, take vitamin and mineral supplements and try to avoid stress (not easy). Thanks for the e-ear!
November 6, 1997 - S. McMillan My husband was diagnosed with sarcoidosis in October 1996. After extremely high doses of prednisolone failed to have any effect on the disease in his lungs, he was put on IV methotrexate every two weeks. Despite it being a very strong immunosuppressive, often used in dual agent chemotherapy for cancer, he had very few side effects. He did suffer stomach cramps and lost some chest hair. It seemed like a miracle cure. The change was almost immediate, all the arthritic pain disappeared and his breathing improved. Within four months his lungs were completely clear and he stopped the methotrexate. Unfortunately the sarcoidosis has returned with a vengence and he now has uveitis, arthritis, lung disease and vertebrae problems. So does anybody out there know what happens next? If anybody is thinking about taking Methotrexate, be aware it is an extremely powerful drug but the benefits for my husband were amazing. It doesn't seem to be an experimental treatment in the UK. Also does anyone know of any support organisations and specialists in the UK?