Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Immunology - results and second opinion

Discussion in 'General Treatment' started by SilverRose88, Jul 2, 2015.

  1. SilverRose88

    SilverRose88

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    I had some immune tests done by a private immunologist back in 2014, his only suggestion was to have 3 different types of vaccines from my results. I decided against having the vaccines given that I fell ill not long after having the meningitis C vaccine when I was 12 years old - I am now 26 and still ill.

    Basically I am seeing another immunologist on Monday for another opinion on my results, I'm not holding my breath on anything really positive coming from it but is there anything I should be asking about specifically about my results? I'll list them now...

    Total Protein 71 g/L (63-83)
    Albumin 46 g/L (34-50)
    Globulin 25 g/L (19-35)

    25 OH Vitamin D 37 nmol/L (50-200)

    Serum Amyloid A 7.6 mg/l (Less than 6.4)

    IgG 8.27 g/L (7.0-16.00
    IgA 1.86 g/L (0.70-4.00)
    IgM 0.30 g/L (0.40-2.30)

    IgG 1 5.62 g/L (4.9-11.4)
    IgG 2 2.65 g/L (1.5-6.4)
    IgG 3 0.18 g/L (0.20-1.10)
    IgG 4 0.44 g/L (0.08-1.40)

    Tetanus Antitoxin screen <0.10 IU/ml <0.1 No immunity

    HIB ab's 0.39 ug/ml less than 1.0

    <0.15: No immunity
    0.15 - 1.0: Immunity is not surely guaranteed
    >1.0: Sufficient immunity

    Low in many Pneum Ab Serotype Specfic but too much to type (!)



    White cell count 12.06 (3.0-10.0)
    Lymphocytes 2.95 (1.2-3.65)

    CD3 percentage: 83.1 (57.22-86.8)

    CD3 2.45 (0.87-2.51)
    CD4/CD3 percentage 56.5 (30.58-60.81)
    CD4/CD3 1.67 (0.56-1.46)
    CD8/CD3 percentage 26.1 (9.8-36.47)
    CD8/CD3 (Cytotoxic T Lymph) 0.77 (0.25-0.99)

    CD4/CD8 ratio 2.16 (0.54-2.97)
    CD19 percentage 5.04 (4.16-26.11)
    CD19 absolute value 0.15 (0.11-0.69)
    CD56 percentage 12.38 (6.0-29.0)
    CD56 absolute value 0.37 (0.01-0.60)

    Comp Classical Pathway CH50 >65 ku/l (23-46)

    Complement alternative pathway 109 % (66-129)

    Mannose binding lectin <0.05 mg/l (1.0-4.0)


    Thanks,

    Becca

    (PS. My vit D insufficiency has been treated)
     
  2. AaroninOregon

    AaroninOregon noob

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    The one thing that stands out to me is your elevated white blood cell count...most of the other tests are Greek to me.
     
  3. minkeygirl

    minkeygirl But I Look So Good.

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    Sorry I'm not up to reading your labs but I see Subset 3 is low. Here is my immunologist experience. I think it makes a difference if they are clinical immunologist's vs allergy/immunologist.

    The first one I went to wanted me to get the Pneumovax. That is used to see if you build antibodies and needed if you want to get IVIG. I did it and had no problems except my arm was pretty sore. But her treatment for my low IgG subclasses was more vaccines, which I did not get. If it's a dead virus I don't think it's as big as an issue and lots of people here have had the vaccines.

    My 2nd opinion was also an allergist/immunolgist. He acknowledged that vaccines were not a treatment, diagnosed me with hypogammaglublinemia and was willing to give me immunoglobulin but we are butting heads about some things since I have never been plagued with infections.
     
  4. SilverRose88

    SilverRose88

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    Yes @minkeygirl the immunologist (who is into allergies) said the only next step would be vaccinations (HIB, pneumovax ll & tetanus). So basically there was nothing more he could do for me until I had those? Urgh..

    In the UK it's very hard to get IVIG/IG. How did he diagnose the hypogammaglublinemia and not give vaccines? Hope you don't mind me asking :)
     
  5. minkeygirl

    minkeygirl But I Look So Good.

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    I have low IgG subsets 1 and 3 and my total immunoglobulin was low. I forget what it was but it was below the normal. I also meet the criteria for CVID so I'm not sure why he didn't use that diagnosis.

    The first immunologist also wanted me to get HIB but I forgot. If you want any chance of getting IVIG you have to get those. I'm not sure about the tetanus. That may be a problem. If you look around here many people have had the Pneumovax and the HIB.

    He told me vaccines were not a treatment which is fine by me. BUT, and this is my issue with him. He does research in asthma, immunology is not his specialty and it was apparent because I asked him to test me for some infections, Chlamydia Pneumonia and Mycoplasma Pneumonia and he refused saying he was an allergist.
     
    SilverRose88 likes this.
  6. cb2

    cb2 Senior Member

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    i too had the Pneumovax injection, immune numbers were measured before the pneumovax and then 5 weeks or so following to see if i build a "theraputic" response.. my immune system did not.. i guess that seems like a logical way to test. oddly i haven't been plagued ( and gratefully) with infections since then either but one dr is still wanting me to try the IVIG.
     
    SilverRose88 likes this.
  7. cb2

    cb2 Senior Member

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    will be interesting to see if treated the low Vit D has helped increase you immune numbers! hoping for the best for you! keep us posted
     
    SilverRose88 likes this.
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The immunoglobulin levels look OK to me. There would be no reason to have IVIg on this basis as far as I can see. IVIG for ME is not to deal with low Ig levels anyway, as we have discussed before. The lack of immunity to tetanus is theoretically a worry if you were to get an injury carrying tetanus. Tetanus is still around everywhere in the environment and so it is still possible to develop clinical tetanus after treading on a rusty nail or something.

    I should not be giving individual advice as such without knowing all the clinical background but in general I don't think these figures show anything relevant to ME or its treatment.

    The low mannose biding lectin may indicate a genetic deficiency, which is common, and this has specific significance in terms of things like staphylococcal skin infection but again that is a specialist issue for your immunologist to address, unrelated to ME.
     
  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    So the clinical immunologist he referred you to was ... :grumpy:
     
  10. Rlman

    Rlman Senior Member

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    @TaintedLuv I've read that homeopathy has helped people who had negative reactions to vaccines. They have remedies for each vaccine I think. Maybe worth talking to a homeopath who treats some vaccines like this one: www.alanfreestone.com. I've never worked with him, just read his blog posts. Also, maybe detoxing could help? Also, I read sometimes nutritional deficiencies can cause low IGG subsets. Wishing you all the best!
     
  11. out2lunch

    out2lunch Senior Member

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    No one has mentioned the IgM deficiency. The IgM value is clearly below the normal range. I have the same problem; it's been tested several times and is always well below the cutoff, usually about halfway between that number and zero.

    Why isn't this considered a concern, especially in ME/CFS?

    The mainstream HMO neurologist who discovered this in me didn't think it mattered, whereas the university research neurologist I saw for post Guillain-Barre neuropathy did think it was a concern. And given my history of chronic infections since infancy, he believed the deficiency was something I was born with.

    Is the standard rationale for selective IgM deficiency possibly being a problem based on the severity of the deficiency? In other words, it isn't considered a problem until the value approaches zero?

    If that's the case, then what's the point of the normal range?
     
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    A 'normal range' is defined purely statistically in terms of 5-95% centile cut-offs in a general population - or at least that is the commonest way to define it. Reference range is a better term. A level within a reference range may be unhealthy - as for slightly above average blood pressure - or a level outside a reference range can be perfectly healthy - as for a urea level below the range.

    The reason for ignoring low IgM levels like the one here is that there is little evidence for it being a problem.
     
    Kati likes this.
  13. out2lunch

    out2lunch Senior Member

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    Thanks, Dr. Edwards, for the info. Although I'm still confused as for what constitutes a "problem" with regard to IgM deficiency, if someone experiences lifelong health concerns such as recurrent infections from infancy on, as I have.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The question is whether that occurs more often in people with low IgM or not. For levels like the one here I don't think there is much evidence for that. That tends to suggest that if you have repeated infections and a low IgM the low IgM may not be the cause of the problem. It might be indirectly related to some much less common cause perhaps.
     
  15. out2lunch

    out2lunch Senior Member

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    http://www.ncbi.nlm.nih.gov/pubmed/23760686

    Clin Rev Allergy Immunol. 2014 Apr;46(2):104-11. doi: 10.1007/s12016-013-8375-x.
    Primary selective IgM deficiency: an ignored immunodeficiency.
    Louis AG1, Gupta S.
    Author information

    Abstract
    Immunoglobulin M (IgM) provides the initial response to foreign antigen and plays a regulatory role in subsequent immune response development, accelerating the production of high-affinity IgG. Though selective IgM deficiency was described more than 45 years ago in children with fulminant meningococcal septicemia, it has been largely an ignored primary immunodeficiency. It appears to be more common than originally realized. Selective IgM deficiency is observed in both children and adults with no gender bias. The most common clinical manifestation of selective IgM deficiency is infections with extracellular and intracellular bacteria, viruses, and fungi. Allergic diatheses are the second commonest presentation of selective IgM deficiency. There is an increased prevalence of autoimmune diseases, which in both humans and mice appear to be secondary to selective IgM deficiency rather IgM deficiency secondary to autoimmune diseases. Selective IgM deficiency, in some cases, is associated with 22q11.2 chromosome deletion and few familial cases of selective IgM deficiency have been reported. Innate immunity is relatively intact. T cells, T cell subsets, and T cell functions are normal. However, several patients with selective IgM deficiency and T cell and NK cell defects with Mycobacterium avium intracellulare infections have been reported. In a subset of patients with selective IgM deficiency circulating IgM+ B cells are decreased or completely lacking. Specific IgG antibody responses against pneumococcus polysaccharides are impaired in a subset of patients with selective IgM deficiency. The pathogenesis of selective IgM deficiency is unclear; decreased T helper activity, increased isotype-specific suppressor T cell activity, and intrinsic B cell defects have been reported. Patients with selective IgM deficiency and impaired pneumococcal antibody responses appear to respond to immunoglobulin therapy.​


    Bacterial & viral & fungal infections? Since infancy.
    Allergic diatheses? Since infancy. Big time.
    Autoimmune disease? Hashimoto's, Guillain-Barre, endometriosis
    Impaired vaccine response? Got it.

    I'm guessing a rather large percentage of folks on these boards have the same problems listed above, with infections, allergies, autoimmune diseases, and impaired vaccine response.

    Anyone else test below the reference range for IgM, other than TaintedLuv and me?
     
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The trouble with that paper for me is that it does not give any control data on population of referral.

    They seem to take two standard deviations as the definition of IgM deficiency. That will mean that about 15 million people in the USA have this 'deficiency'. Yet they only had about 20 patients collected in their clinic - probably from a very large catchment area since immunodeficiency tends to be dealt with in only a few centres. The difficulty with saying that patients present with infection is that all patients going to their clinic will present with infection because that is what the clinic is there for. The IgM test will have been done because the person has infection. That does not emean that the low IgM is the cause of the infection. It looks as if the number of people with 'IgM deficiency' on their basis who get infections worth referring to their clinic is maybe one in ten thousand at most - maybe one in a hundred thousand. Now infection in that few people could easily be due to other things. So I am not over excited by their claim that IgM deficiency is more important than people think.
     
  17. out2lunch

    out2lunch Senior Member

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    OK, let's assume for argument's sake that IgM deficiency is being overstated by these researchers.

    If that's the case, then what's the tipping point? In other words… where do you draw the line between a deficiency that's mostly a statistical aberration and a deficiency that's genuinely a problem?

    Can someone who consistently has had IgM below 10 mg/dL avoid getting infections, or is that wishful thinking?

    This is the question that immunologists can't seem to answer. How low is too low regarding IgM?
     
  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Questions like this get complicated - which is why immunologists may not be able to give a simple answer. If a genetic defect produces a very low IgM that may be because of a regulatory switch in lymphocyte maturation that also has major effects on other functions. And it may be the lack of these other functions that leads to infection. So low IgM may be a sign of a range of different gene defects, some of which may have more infections and others not. The paper makes some suggestions about that.

    They do not seem to mention very low IgM levels. Most of their cases seem to be above 10mg/dL if I remember rightly. It may be that any situation that produces very low IgM more or less has to produce low IgG and IgA because of the way class switching works, so maybe isolated very low IgM hardly ever occurs.

    What matters is what the real risk is in a population with moderately low IgM and we cannot know that without proper population screening studies. On a logical basis one would not expect IgM levels down to about 10mg/dL to have a very dramatic effect on infection. It might make the immune response to acute infection slower - it might take an extra few days to get over a virus. But I am not sure one would expect it to have much effect on chronic infection or long term immunity. If IgM is largely there to get the immune response started then a low level would just do it a bit more slowly. This may not prove to be true but in general it is not thought that IgM levels are important in long term protection against infection.
     
  19. wastwater

    wastwater Senior Member

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    22q11.2. I think this is called DiGeorge syndrome also and comes under neurocristopathy,I've not heard of the immunodeficiency before but is interesting to me as I have a related condition Axenfeld Riegers,thanks.
     
  20. wastwater

    wastwater Senior Member

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    I saw that Digeorge comes with a 20-30fold increase in schizophrenia,is this immune related
     

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