Discussions By Condition: I cannot get a diagnosis.

No diagnosis, many tests after 10 months

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: theomars1
  • June 25, 2007
  • 10:12 PM

I am a male 21 year old college student. For 10 months I have been getting sick 3-4 days out of every month at 25-30 day intervals. This has interrupted my college classes and work part time. I have swollen cervical lymph nodes, extreme fatigue, night sweats, high fever, and severe scalp flaking. I am seeing my primary care doctor as well as an ENT and Infectious Disease Specialist. I have been tested constantly with no results. Everything has been negative except high liver functions which goes back to normal after I get through the 4 days of sickness. I have had a fine needle biopsy as well as an excisional cervical biopsy to rule out Lymphoma, Hodgkin's Disease and Kichuchi Disease. It came back and said I have reactive lymphoid hyperplasia.

I have had a Gallium Scan as well as CT scans of my neck, abdoman, and pelvis with/without contrast which were negative. I have had the usual HIV, Mono, Hepatitis blood tests, urine tests and been cultured for fungus and bacteria.

Here are some of the names of my blood tests that were negative.
Immunofixation, herpes simplex, toxoplasma, anti nuclear, CMV 1GG Panel, Ehrlichia, EHR.Chaffeensis, Brucella antibody, Chlamydia, Q Fever, Epstein Barr.

I was sick again this weekend and the doctor has ordered a PET Scan as well as more blood work (IgA, IgM, IgG, IgE Immunoglobulin)

I am getting very depressed as I keep getting sick and am not finding any results so I can be treated. I can't imagine what other tests are available. Is there anyone out there who can tell me what I should be doing or who I should see next? I am beginning to feel like my doctors are "grasping at straws".:confused:

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8 Replies:

  • I am sorry to hear all that you are going through - that is certainly a lot of tests! I am going to suggest that you may perhaps be having a hyper immune response and that it could be to a certain allergen. Please look into a therapy called NAET (Nambudripad Allergy Elimination Technique) - it is revolutionary and noninvasive. Western allergy testing is dubious at best, in my opinion. A certified NAET practitioner will be able to pinpoint exactly what is causing you to get sick...please just look into this and see if there are practitioners in your area. I think it would really help. There is so much more that needs to be studied concerning the relationship of the brain and the immune response. NAET is way ahead of its time and has changed my life. In the meantime try to write and track in a journal all of your daily activities, including the foods you eat, and when you start to have these symptoms. It is very hard to find a pattern, but with a daily log done over the course of a couple of months, you may begin to see a pattern occurring that could be contributing to your problems. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Do you have a functional or Integrative medical resource in your area? Google "functional medicine" and your state's name or "Integrative medicine" and your state's name. It should bring up some locations of these kinds of centers. This kind of medicine looks for the cause rather than at the symptoms. It may help you discover what is troubling you. They will run a seies of tests as well, though I am certain that they will look at the test results you have already had done, so you most likely won't be duplicating processes. If you don't get any responses to integrative medicine, you can also contact www.enterolab.com who conducts tests regarding digestive, neurological and auto-immune disorders. I would also recommend writing down what you have to eat on the days prior to a session of illness. Record as much as three days earlier. You may begin to see a pattern. Here's to better health for you,L
    Anonymous 42789 Replies Flag this Response
  • Here's a few more causes for all of the varieties of Lymphadenopathy: toxoplasmosisinfectious mononucleosiscat scratch diseasetuberculosispost-vaccinial lymphadenitisanticonvulsant therapyviral lymphadenitisdermatopathic lymphadenopathyrheumatoid arthritisCastleman's disease
    Monsterlove 2921 Replies Flag this Response
  • I have lymphadenopathy also. I had many tests too. All came back normal. I now have my diagnosis and it is CFS/ME. read around this forum, it is filled with information on this disease as it is being diagnosed more and more everyday. Both doctors and patients are beginning to realize this is a real disease. The cause is, as of yet, unknown. It is being linked in many ways to vaccines and possible underlying LymeEver had mono?EBV?HH6?negative for HIV? look into CFS. Good Luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • sorry, I realized after asking you about all the viruses that you had already been tested. All the more reason to consider CFS. I tested negative for all of them too but still have CFS diagnosis.some more info as far as the blood tests, much is done in way of immunology testing.First, a patient with ME/CFS may have increased number of cytotoxic t-cells.most patients have t-cell activationlow natural killer cell numbersmay be depleted of Stat-1, however, there is no commercial testing available for this.elevated immune complexesabnormal atypical lymphocyte countsignificantly reduced CD8 supressor cellsPopulation and increased activation marker (CD38, HLA-DR) on CD8 cellsAbnormal CD4/CD8 ratioelevations of circulating cytokinesImmunologic defeciencies(most often IgG1 and IgG3)Evidence of antilamin antibodies(antibodies against this protein are proof of autoimmunity and damage to brain cellsESR rate unusually low with a brief period of elevationInsulin levels and glucose tolerance test-glucose tolerance curves are abnormalchemical Stress test or exercising testing is also used.Patients may also haveswelling of lymph nodesShortness of breath upon exertionNodular Thyroidnasal passage obstruction and inflammed areas around tonsillar pillars and unusual sensitivity of cervical vertabrae area.I hope this clarifies some questions for you.be Well and Good Luck...mommy cat
    mommy cat 1654 Replies Flag this Response
  • The current studies suggest that gluten sensitivity is at the core of CFS (and several other a-a) as it causes gut inflamation which leads to several previously "of unknown origin," auto-immune illneses. Several of the conditions listed in the post above are a direct result of GS. The most comprehensive panel I am aware of that is available today, utilizing the most current research is available from Enterolab- out of Texas. Reach them at www.enterolab.com. I do not work for them, but I have tested through them. The complete panel test will also tell you if you carry the genes for Celiac Disease. While only 12% of siblings and children of people who have CD will also get CD, about 80% of siblings and children with GS will be GS as well. It is far more prevelant than realized. Traditional docs will use traditional tests which may or may not be what you need. Do some research and if $$ is a concern, try the two week gluten challenge diet to see if that is what works best for you. FM, CFS, MS, PN, HS, AS to name a few respond to a gluten free diet. Here's still wishing you some answers and improved health,L
    Anonymous 42789 Replies Flag this Response
  • I see a primary care doctor, ENT, and an Infectious Disease Doctor. I have previously asked them if CFS is a possibility and I get the feeling they don't recognize it as a real disease. Does anyone know of a doctor in the Orlando, Florida area who would look at my 100 pages of blood test results, X-Ray & CT Scan results as well as biopsy results?
    theomars1 1 Replies Flag this Response
  • 100 pages with no definitive diagnosis is the first clue in concluding CFS. The majority of people in this forum are all telling the same story as you. I know, I'm one of them. I was sent to Roswell to look for a cancerous tumor that 5 doctors were convinced I had. No cancer. New doctor, CFS. All of the pieces fit. Do yourself a favor. Google local CFS doctors in your area. Start calling around to doc offices and ask them if they have any patients who suffer with CFS? If so, the docs are doing their best to recognize it as well as treat it.Read aroound this forum as there is anad there will be information pertaining to this subject.Best of wishes to you and may you find your peace...mommy cat
    mommy cat 1654 Replies Flag this Response
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