1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Positive ANA Screen ="Tests are perfectly normal" ??

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by jimells, May 3, 2012.

  1. jimells

    jimells Senior Member

    Messages:
    347
    Likes:
    417
    northern Maine
    A year ago a rheumatologist ordered tests for ANA, IGG, IGA, etc. Only Complement C4 was slightly low. The rheumy said he couldn't help and kicked me loose.

    Now a neurologist seems to agree that I have a systemic illness, and she ordered ANA, ANCA, Protein Electrophoresis, Myeloperoxidase, and some other stuff.

    The test results were in today's mail - I always have a copy sent directly to me. The ANA screen is positive, the titer is 1:160, and the word 'Nucleolar' is on the results. (What does this mean?) The Myeloperoxidase (whatever that is) is >9, considered positive (for what?).

    I started sobbing - after eight years of rubbish from dismissive doctors, finally a lab test showing that something is wrong, I really am seriously ill, I'm not a malingerer or a nutter. Like most of the folks here, my file is full of trash like "seeking attention", "exagerating symptoms", "drug addict", "just needs therapy and exercise".

    Two hours later the doctor's office left a message that "The test results are perfectly normal"

    Huh?

    If it's 'normal' to have all these symptoms and abnormal test results, why bother to order the tests? I do understand that one out-of-range test by itself might not be significant, but so far I haven't come across anything that suggests ANA titer of 1:160 is not significant.

    Should I look for (another) new doctor or for new tests?
  2. K2 for Hope

    K2 for Hope ALways Hoping

    Messages:
    256
    Likes:
    330
    Jacksonville, FL 32258
    I'm glad you are able to post both the results of the tests as well as your frustration. I am not the best person to respond to the results of the test. I'm sure someone will, but I wouldn't dismiss it. IMHO, I would go to another DR with the test results, knowing that they may order another set or may explain why your Dr said it was "normal".

    I recently had something similar happen, but my Primary care Dr is very good at explaining things to me. I watch my blood tests and noticed that the test for kidney disease looked like it had improved to within the "normal" range, but was marked "high". She said that due to recent improvements in testing, several of the numbers that used to be considered low or high had changed. For me, mine was still better than before, but I would not have known that they changed the diagnostics.
  3. jimells

    jimells Senior Member

    Messages:
    347
    Likes:
    417
    northern Maine
    K2, thanks for your reply.

    I finally figured out that 'Myeloperoxidase' is part of the ANCA test, so that makes more sense than the Wikipedia article that said MPO had something to do with heart disease risk.I knew the neuro was not working in that direction.

    There was also ESR, TSH, B12, and Folate; they were all normal. Perhaps ESR must be abnormal for the other tests to be significant? I understand ESR can indicate inflammation.

    There was a note under the ANA Screen results:
    "The presence of cytoplasmic flourescence was noted on the HEp-2 slide. Other reactivities (e.g. anti-mitochondrial antibodies or anti-smooth muscle antibodies) may be responsible for this flourescence"

    Possible anti-mitochondrial antibodies doesn't sound good to me. I have long suspected problems in this area, as I quickly run out of steam and I have bad PEM.

    I have high confidence in the knowledge and ideas of the folks on this forum. The doctors, not so much.
  4. roxie60

    roxie60 Senior Member

    Messages:
    1,594
    Likes:
    466
    Central Illinois, USA
    Sorry to hear you have been disappointed by Drs again, they just dont seem to realize the harm they can do but how can they when most spend no more than 10-12 mins with patients. I would also suggest there office explain why they feel the results were 'normal'. It is beyond frustrating dealing with so many disappointments and judgemental people.
  5. kaffiend

    kaffiend Senior Member

    Messages:
    166
    Likes:
    122
    California
    I have a positive ANA but an extremely low sed rate, so medical doctors dismiss the finding because it's non specific. I tend to think the low sed rate tells us something about the disease and might even be a biomarker.
  6. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,899
    Likes:
    7,989
    Amersfoort, Netherlands
    Half of people with elevated ANA have an autoimmune disease. Maybe that doesn't tell you that definitely have one, or what it is, but it does indicate that it should be investigated further, unless the other results somehow rule out an autoimmune disease.

    Even wikipedia uses the same level you listed as an example of a high result, and says that subtypes are determined after getting a result like that. The problem might be that your neurologist doesn't know a damn thing about autoimmune issues, or that he should be following up on that result.

    Any chance you can post all of your results?
  7. merylg

    merylg Senior Member

    Messages:
    759
    Likes:
    483
    Sydney, NSW, Australia
    Hi jimells,

    I recently had ANA & Anti-Smooth Muscle Antibody (Anti-SMA) tested to exclude autoimmune hepatitis. The reason for the testing was I had slightly elevated Liver Function Tests & an abdominal ultrasound showed signs consistent with early cirrhosis. The tests were ordered by a gastroenterologist.
    These and some other tests were negative.

    Can you ask them to test for Anti-SMA & Anti-Mitochondrial Antibodies?....seeing as your ANA seemed to imply that one or both of these might be positive.
    You might need a Gastroenterologist, Physician or Rheumatologist to request these.

    http://labtestsonline.org/understanding/analytes/asma/tab/test

    http://en.wikipedia.org/wiki/Anti-mitochondrial_antibody

    http://en.wikipedia.org/wiki/Anti-cardiolipin_antibodies
  8. anciendaze

    anciendaze Senior Member

    Messages:
    853
    Likes:
    856
    There is a Catch-22 in the way tests for biomarkers are constructed and interpreted. After I saw dramatic correlations for CFS with anticardiolipin antibodies (ACA) in a paper by the group at University of Hawaii I went looking through previous literature to find out how this could have been overlooked. What I learned was that there had been a period when assay sensitivity increased and doctors thought too many people were testing positive. The medical consensus was to treat levels of ACA which had previously been considered pathological as normal or indeterminate. I think you already know the medical consensus about CFS and symptoms reported by patients.

    What is going on is that laboratory data indicating abnormal conditions is being validated by the extent to which it supports preexisting clinical judgment. If the patient has no prominent signs of disease the doctor will dismiss results. You can't expect tests for biomarkers to change opinions if they are being validated by the way they support current opinions.
  9. jimells

    jimells Senior Member

    Messages:
    347
    Likes:
    417
    northern Maine
    So doctors mostly use test results to confirm their diagnoses? I read someplace that doctors usually have a diagnosis within 5 minutes of meeting the patient, so that would fit. I do find it strange that all the specialists I have seen order diagnostics *after* the exam, instead of before, even though they have supposedly reviewed the file before agreeing to the exam appointment.

    Here's all the latest tests and results:
    Folate 14.8 (normal)
    ANA Screen positive
    ANA Titer nucleolar
    ANA Titer 1:160
    ANCA Proteinase-3 AB <6 (negative)
    ANCA Myeloperoxidase <6 (negative)
    TSH 1.45 (normal)
    B12 853 (normal)
    ESR 5 (normal)

    Protein Electrophoresis (all normal)
    ----------------------
    Total Protein 7.7
    Albumin 3.8
    Alpha 1 Globulin 0.3
    Alpha 2 Globulin 0.7
    Beta Globulin 1.1
    Gamma Globulin 1.8
    Comment:
    Normal pattern, no monoclonal immunoglobulins identified

    I assume these tests cost a boatload of money (people on Medicaid are too dumb to understand an Explaination of Benefits, so we never see the costs). It's distressing to me to think my neighbors, not much better of than me, are paying for all this stuff, and I'm not getting any answers or useful treatments.
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,899
    Likes:
    7,989
    Amersfoort, Netherlands
    According to wikipedia:

    The normal ANCA (Anti-neutrophil cytoplasmic antibodies) probably rules out some diseases: Wegener's granulomatosis, Polyarteritis nodosa, Microscopic polyangiitis, Pauci-immune necrotizing and crescentic glomerulonephritis, Churg-Strauss syndrome, Leukocytoclastic angiitis, ulcerative colitis and ankylosing spondylitis.

    The normal ESR 5 probably rules out: multiple myeloma, temporal arteritis, polymyalgia rheumatica, some auto-immune diseases, systemic lupus erythematosus, rheumatoid arthritis, some chronic kidney diseases, polycythemia, sickle cell anemia, hereditary spherocytosis, and congestive heart failure.

    The normal globulin levels probably rule out a bunch more things.

    But it leaves many things that it could still be:
    So there are a lot of things that haven't been ruled out yet and can be checked by more specific autoimmune antibody tests. Maybe you could get one of your doctors to check into it further or refer you to someone more familiar with autoimmune diseases (such a rheumatologist) to check for those?
  11. roxie60

    roxie60 Senior Member

    Messages:
    1,594
    Likes:
    466
    Central Illinois, USA
    OMG that is awful, these people call themselves scientist, where did they get their faulty education, argh!!!!!

  12. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    737
    Hi, jimells and the group.

    Elevation of some autoantibodies has been reported in ME/CFS by several investigators. Most of the data was summarized in 2009 by Ortega-Hernandez and Shoenfeld, who study autoimmune diseases, though they didn't include the thyroid antibodies (Hashimoto's) or the anticardiolipin antibodies (as detected by Hokama's test). Here's the abstract. Sorry, I don't have a link for the full paper.

    http://www.ncbi.nlm.nih.gov/pubmed/19758205

    Here's what they say: "Although CFS shares several clinical and pathological similarities with several autoimmune rheumatic and infectious diseases, such as the presence of diverse autoantibodies and alterations in some immunological markers, nevertheless, there is still a lack of evidence for designating CFS as an autoimmune phenomenon."

    For what it's worth, I concur with this.

    In my opinion, the reason autoimmune antibodies are found in ME/CFS is that oxidative stress damages components of the cells, and causes some early cell death. The immune system responds to the resulting substances that appear to be foreign, and raises antibodies to them in the process of cleaning up the debris. This can result in autoimmune reactions. This unfortunately can also add to the inflammation that is present and can produce additional oxidative stress.

    In my view, the key to recovery is to decrease the oxidative stress to stop this damage and the resulting immune response, which means that glutathione must be restored to normal levels. To do this, one has to lift the partial block in the methylation cycle, and that's what the methylation protocols do.

    Best regards,

    Rich
  13. jimells

    jimells Senior Member

    Messages:
    347
    Likes:
    417
    northern Maine
    Thankyou Valentijn. That sure is a long list of diseases. Perhaps instead of one of the diseases you listed, I have ME/CFS???

    The last rheumatologist just moved back to Saudi Arabia, so that will force the doctors to send me to a different rheumy, maybe someone who will try a little harder to help me.

    My primary care physician, a nurse practitioner does believe I am ill, so I'm pretty sure she will want to follow up on this ANA business.
  14. Xandoff

    Xandoff Michael

    Messages:
    292
    Likes:
    182
    Northern Vermont
    I too had a extremely low sed rate which usually just confuses non ME CFS Docs. I do think it is a bio-marker for ME CFS. After 8 years of perfect medical tests and being dismissed I finally found a real ME CFS Doc 160 miles away. I had all the test run that showed high titers of EBV, CMV, C Pneumonia and all the other nasties. Regular GP's and specialists (Rheumy's, Endocrinologists etc) can not help us.

    Find a real ME CFS Doc Kaffiend!
  15. Xandoff

    Xandoff Michael

    Messages:
    292
    Likes:
    182
    Northern Vermont
    I have FM/CFS or ME CFS. I encourage you to find a real ME CFS Doctor. Try the Co-Cure List for a Doctor in Maine. I live in Northern VT and it is difficult to find a real ME CFS Doctor. I travel 160 miles to Western Mass. They may believe you really are sick (Nurse Practioner) but they do not understand this illness. I have gotten over blaming the Medical Doctors. They have been told CFS is bulls*** and they don't know what to test for and where to get the blood work and tests that we need. Good Luck Jimells.
  16. Marlène

    Marlène Senior Member

    Messages:
    441
    Likes:
    210
    Edegem, Belgium
    Same here, positive ANA and lots of nasty bugs. I discovered last week my methylation is disfunctional and low copper.
    My B12 seemed normal but with specific tests (methylation panel, sulphur check in urine and organic acids) it appeared that I was extremely low in vitamin B12 and B6.

    For some reason I noticed that my monocytes were always elevated and very low CRP as well. I suspected a B12 deficiency because I injected B12 weekly and when the values were above 2000, all negative values disappeared.
  17. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    737
    Hi, all.

    If the sed rate is below 5 mm per hour, it suggests hypercoagulation of the blood. David Berg found this in many people who have ME/CFS, and he called it ISAC (Immune System Activation of Coagulation). David used to run Hemex Lab, but sold it to Esoterix, which is now a division of LabCorp. If you Google Esoterix Phoenix Arizona, you can find the lab that offers the testing he developed.

    The idea is that the immune system causes fibrin to be deposited in the capillaries as an aid to isolating pathogens, such as viruses. This happens in normal people as well, but in a person who as ISAC, there is a genetic polymorphism in one or more of the proteins of the coagulation cascade, so that the fibrin deposition is greater. The result is that oxygen has difficulty diffusing from the capillaries into the cells.

    The treatment that has been used for this is prescription low dose heparin or an over-the-counter proteolytic supplement, such as nattokinase, serrapeptidase, or lumbrokinase, together with something to prevent the viruses from getting out of hand, such as a specific transfer factor or an antiviral. David used to emphasize the latter in his talks, because early on some people had a worsening of the ISAC rather than an improvement, because the released viruses activated the immune system and hence the coagulation, even more. So this needs to be done carefully.

    Best regards,

    Rich

See more popular forum discussions.

Share This Page