Discussions By Condition: Medical Errors

Weekly viral symptoms for past 5 years. Desperate for answer!!!

Posted In: Medical Errors 5 Replies
  • Posted By: stacyinspace8
  • March 7, 2010
  • 10:56 AM

I have been ill for 16 years, having been diagnosed with Chronic Fatigue. However, beginning 5 years ago, I began getting infections and am now to the point where I am sick with a virus every week. My symptoms are severe head congestion, sneezing, burning in my sinuses and eyes (to where I can't open them) dizziness, increased fatigue and body aches, headache, and low-grade fever, with some variation in symptoms, severity, and length of time, but never more than two days in between each onset. I have high Epsteing-Barr titers and herpes virus, but nothing else can be found. Allergies have been treated/ruled out, and so have the environoment, as I have moved 4 times in the past 5 years. I do not have to leave the house or come in contact with anyone to become infected...symptoms hit very suddenly and severely. I am sure it is infectious...I used to respond with supplements, but now respond to nothing. I am married, with two boys, and have had to be put on disability and sacrifice nearly everything, including much of the care of my boys. I have been to countless doctors and none of them can make sense of this mysterious illness which I know goes deeper than my CFS, which is debilitating enough in itself. I don't know where to turn next, or what specialist to seek. I have never heard of anyone with my symptoms and neither have my doctors. Does anyone out there know what I'm going through or have any idea what I might try besides immunology and naturopathic care?

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5 Replies:

  • I was born with primary immune system deficiencies that make me vulnerable to every pathogen in the air and in food. If your immune system is deficient, levels of exposure that would not bother most people would flourish in your system and take hold as an infection. Roughly one out of 400 people with a Scandinavian heritage are born with primary immune deficiencies. For unknown reasons, some people do not become highly symptomatic until some event (possibly one really nasty virus) opens the door a bit wider. I was highly symptomatic since I was an infant and first correctly diagnosed in 1955. Every doctor that I have met in California (except those with formal advanced training in Immunology) has informed me that I am obviously a liar because people like me never live past the age of 40. I am currently 61 years old. In Scandinavia, doctors do not automatically write off people with immune deficiencies after a prescibed age. Living a very long and full life is possible with the right medical managment. This problem is extremely rare in most ethnic groups, but it is not rare in ethnic groups that were ruled by the Vikings for a long time, such as Irish and Sicilians. If you can afford to go to National Jewish Hospital in Denver, Colorado, they seem to be doing the most advanced research on this. They will schedule a comprehensive diagnositic evaluation if you make the appointment far enough in advance. If they are able to give you a definitive diagnosis, they will offer your doctor access to extensive treatment guidelines to dramatically improve the quality of your life. I have been amazed at the absolute misinformation I have heard from every medical spcialty outside of Immunology. Some of the most dangerous misconceptions I have heard came from specialists in Infectious Disease. My best experiences were when a pediatric immunologist was willing to act as my primary care doctor. I have been ill for 16 years, having been diagnosed with Chronic Fatigue. However, beginning 5 years ago, I began getting infections and am now to the point where I am sick with a virus every week. My symptoms are severe head congestion, sneezing, burning in my sinuses and eyes (to where I can't open them) dizziness, increased fatigue and body aches, headache, and low-grade fever, with some variation in symptoms, severity, and length of time, but never more than two days in between each onset. I have high Epsteing-Barr titers and herpes virus, but nothing else can be found. Allergies have been treated/ruled out, and so have the environoment, as I have moved 4 times in the past 5 years. I do not have to leave the house or come in contact with anyone to become infected...symptoms hit very suddenly and severely. I am sure it is infectious...I used to respond with supplements, but now respond to nothing. I am married, with two boys, and have had to be put on disability and sacrifice nearly everything, including much of the care of my boys. I have been to countless doctors and none of them can make sense of this mysterious illness which I know goes deeper than my CFS, which is debilitating enough in itself. I don't know where to turn next, or what specialist to seek. I have never heard of anyone with my symptoms and neither have my doctors. Does anyone out there know what I'm going through or have any idea what I might try besides immunology and naturopathic care?
    ripvanwinkle1948 6 Replies Flag this Response
  • Thank you so much for your response. It sounds like it's worth looking into, but my only question is, having had a battery of tests done by an immunologist, is this likely something that would have shown up, or is it difficult to detect? Was it an immunologist that diagnosed you? I so appreciate your input! Thanks!And good for you for sticking in there!
    stacyinspace8 4 Replies Flag this Response
  • Most immune system tests are definitive on the first try. A few have enough false positives that a clear diagnosis might take years. Your greatest concern is to find an immunologist who is actively treating patients for immune system problems. This is more difficult than it sounds. When a doctor specializes in "Allergy and Immunology" there is a lot more easy money to be made as as allergist. Explaining immune system problems to insurance reviewers takes so much time that it becomes very hard for doctors in private practice to make any money as an immunologist. My family doctor as a child was able to hit the right diagnosis in 1955, but he taught part-time at the University of Iowa Medical school. That gave him easy access to pediatric immunologists at the Univeristy of Iowa for consultations. The best Immunologists are often in a very large clinic or university medical school where they are on salary and shielded from concerns about insurance issues. Anyone with viral symptoms for 5 years needs to see an Immunologist, if only to rule out the problems that I have. Some of my allergies are so severe, I will develop flu-like symptoms if I am exposed to certain molds. Search for the Immune Deficiency Foundation on the Internet. They might be able to point you in a good direction. Thank you so much for your response. It sounds like it's worth looking into, but my only question is, having had a battery of tests done by an immunologist, is this likely something that would have shown up, or is it difficult to detect? Was it an immunologist that diagnosed you? I so appreciate your input! Thanks!And good for you for sticking in there!
    ripvanwinkle1948 6 Replies Flag this Response
  • Thank you so much for your advice. I really value it. (My immunologist is also an allergist and tells me I'm "healthy.") I will definitely look into your suggestions. Thanks, so very much! Best of health to you!Stacy
    stacyinspace8 4 Replies Flag this Response
  • hi nothing to worry,you waiy for some more time with supportive treatment.evaluate for parasitic infestions and allergic and collagen vascular disorders.you can do YOGA AND PRANAYAMA which also improves your immune status of your body. from;shashidoc73@rediffmail.com
    Anonymous 42789 Replies Flag this Response
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