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Overactive immune system & vaccinations - advice

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by SilverRose88, Feb 7, 2014.

  1. SilverRose88



    I have severe ME (have had it since I was 11, I'm now 25) but was also diagnosed with pots & ehlers danlos type 3 in 2011, I have recently been seeing an immunologist who has an interest in mast cell in Oxford (UK). I saw him yesterday regarding my results and he's discovered my immune system is apparently overactive, I am prone to recurrent tonsillitis and bladder infections (currently waiting to have a bladder biopsy as I have recently discovered my bladder is twice the normal size). He said my immune system needs boosting, I am not covered for tetanus, I had an allergic reaction to it when I was younger. I also became unwell after the meningitis c vaccine when I was 11. He suggested I go into hospital to have the following vaccines 'pneumovax II' and 'menitorix'. Basically I am concerned of the effect this will have on my ME and are there any papers to suggest vaccinations make ME worse? I am in limbo as to what to do as he says this will make my body produce antibodies which in turn will produce one of the things I'm very low in (I can't remember the name of it but he said there is no other way to boost it?). I'm in limbo - alongside this I am trialling high dose antihistamines for mast cell after my bladder biopsy, but with regards to the immune issues I don't know what to do.

    Any help/advice would be great, I hope I've posted this in the right section!

  2. SOC

    SOC Senior Member

    He says your immune system is "apparently overactive" which is a very ambiguous statement. Do you have more specific lab results to back up that statement. People here who have had immune testing might be able to make better suggestions if we knew more specifically what was wrong with your immune system.

    The immune system is an extremely complex system with a multitude of interactions and balances. It's rarely as simple as the overused "overactive" or "underactive".
    MeSci likes this.
  3. SilverRose88


    Can I ask why it is a very ambiguous statement? He went through all of my results with me but I am very foggy and also have no clue about immunology, but I am awaiting a copy of my results, which I will post when I get them.
  4. SOC

    SOC Senior Member

    The immune system is exceedingly complex and can't really be summarized with something as simple as "overactive". I understand that your immunologist might have been trying to give the simplest layperson's explanation possible, but no one can give you suggestions about immune issues or vaccinations without more information than that.

    When you have info about levels of pro- and anti-inflammatory cytokines, T- and B-cell populations, and such, then someone might be able to help sort out how your immune abnormalities relate to ME (or not).

    It is puzzling that your immunologist is suggesting that your immune system needs "boosting" while at the same time saying it is "overactive". Again, it maybe his way of trying to simplify the explanation for a layperson. There could easily be parts of your immune systems functioning at less than ideal levels and other parts functioning at higher than ideal levels. Maybe one is compensating for another. Maybe it's just a mess. ;) It's hard to have any idea without more info.
  5. SilverRose88


    Thanks for explaining :) I don't know much about immune tests but I managed to get a copy so here we go...

    Sample date: 14.01.2014

    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

    IMMUNOGLOBULIN G 8.27 g/L 7.0 - 16.0

    IMMUNOGLOBULIN A 1.86 g/L 0.70 - 4.00

    IMMUNOGLOBULIN M *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, basic immunisation or booster vaccination is recommended. 0.1 - 0.5 Immunity not surely guaranteed. Booster vaccination is recommended. > 0.5 Sufficient immunity

    Haemophilus influenzae B 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

    Pneum Ab Serotype Specific Serotype Specific APA
    [IgG] ug/ml
    1* 0.01
    3* 0.37
    4* 0.03
    5* 0.19
    6B* 0.16
    9V* 0.28
    8 0.25
    14* 0.01
    15B 0.03
    18C* 7.91
    19A* 0.12
    12F 3.55
    23F* 0.37
    - Serotypes marked * are present in Prevenar 13 vaccine.

    WHITE CELL COUNT *12.06 x10^9/L 3.0 - 10.0

    Lymphocytes 2.95 x10^9/L 1.2 - 3.65


    WHITE CELL COUNT 12.06 x10^9/L

    Lymphocyte count 2.95 x10^9/L 1.2 - 3.65

    CD3 percentage 83.1 % 57.22 - 86.8

    CD3(T Lymphocytes) 2.45 x10^9/L 0.87 - 2.51

    CD3(T Lymphocytes) 2451 cells/uL 870 - 2510

    CD4/CD3 percentage 56.5 % 30.58 - 60.81

    CD4/CD3(Helper T Lymphs) *1.67 x10^9/L 0.56 - 1.46

    CD4/CD3(Helper T Lymphs) *1667 cells/uL 560 - 1460

    CD8/CD3 percentage 26.1 % 9.8 - 36.47

    CD8/CD3(Cytotoxic T Lymph) 0.77 x10^9/L 0.25 - 0.99

    CD8/CD3(Cytotoxic T Lymph) 770 cells/uL 250 - 990

    CD4/CD8 ratio 2.16 0.54 - 2.97

    CD19 (Percentage) 5.04 % 4.16 - 26.11

    CD19 (Absolute value) 0.15 x10^9/L 0.11 - 0.69

    CD56 (Percentage) 12.38 % 6.0 - 29.0

    CD56 (Absolute value) 0.37 x10^9/L 0.01 - 0.60

    Comp Classical Pathway - CH50*>65 kU/l 23 - 46

    Complement Alternative Pathway109 % 66 - 129

    Mannan/Mannose binding Lectin*<0.05 mg/l 1.0 - 4.00

    Thyroid peroxidase ab's <5.0 IU/ml 0 - 34

    Serum Tryptase 1.50 ug/l Up to 11.4

    Histamine - PLASMA 2.7 nmol/l 0.0 - 9.0

    Histamine - Urine 8 ug/l

    Creatinine - Urine 0.23 g/l

    Histamine/Creat Ratio 34.8 ug/g 8 - 53

    Urine Methyl Histamine 52.2 ug/l

    Methyl Histamine/Creat. ratio 141 ug/g creat34 - 177

    Diamine Oxidase Activity >30.0 U/ml See below

    < 3 : Histamine intolerance indicated 3 - 10 : Histamine intolerance probable > 10 : Histamine intolerance improbable

    Histamine Rel. Urticaria Test ~ RESULT : Negative


    Max histamine release <16.5% : Negative

    Max histamine release >=16.5% : Positive
  6. SOC

    SOC Senior Member

    The most common immune dysfunction in ME/CFS is low NK cell (CD56) number or function. Your NK cell numbers look normal. You have not been tested for NK cell function (also called "activity) which is the more common problem in ME/CFS. You can try asking your immunologist for that test but since you're in the UK, you may not be able to get it.

    Another common dysfunction is low Cytotoxic T-cells (CD8), which you don't have, either. :thumbsup:

    You have low IgM, but not not very low. Mine is even lower than yours and my immunologist is not overly concerned. There's no treatment for that anyway, I'm told. :(

    Your vit D is low, which can be affecting your immune system. You should check with your doc about vit D supplementation. My doc recommends 5000 IU of a liquid D3 under the tongue daily until vit D, 25 OH is well into the normal range.

    It looks like your immunologist is recommending booster vaccines because you are showing low antibodies for some infections. If I were in your shoes, I'd ask if, given your low IgM, whether you are going to seroconvert (produce sufficient antibodies) even if you get the vaccines.

    It appears you have no immunity to tetanus, but you have some immunity to the influenza B virus -- just not the level they want.

    These two don't look good, but I have no idea what they mean. Maybe someone else can help you there. You could try googling those two for a start and see what turns up. You could start with these two sites for info about your low mannose binding lectin

    Vaccines are tricky for PWME. The top docs seem to be advising against live virus vaccines in general, and in favor of killed virus vaccines if you need them and have tolerated them in the past.

    Since you do not have the more common immune deficiencies in ME/CFS and you do appear to have a known rare immune condition, it's possible that you've been misdiagnosed with ME, which would be a good thing. :D That might be worth following up with your doctor. While vaccinations can be bad for PWME, they appear to be helpful for people with mannose-binding lectin deficiency, so it would be smart to figure out whether you actually have ME.

    Do you have PEM according to the ICC definition? If so, it is more likely you have ME. If you have fatigue or exercise intolerance without exacerbation of other symptoms, it's less likely you have ME.
  7. SilverRose88


    Thank you so much for taking the time to help and reply to me I appreciate it :)

    I have severe PEM, I use a wheelchair everywhere when I am able to sit up but mostly spend my time in/on my bed. Any exertion I suffer for afterwards.

    I am allergic to the tetanus jab but the other vaccines he wants doing I am cautious about because I fell ill not long after the meningitis C vaccine - what would you do? I'm very concerned it will make me relapse giving such a load on my immune system? I remember him saying about it's not possible to up my IgM but by having the vaccines it will make me produce antibodies which will hopefully make the IgM raise itself?

    Do you have ny idea what the low IgG3 & IgG4 mean?

    I will take a further look into the two other things, thank you. I don't really understand the mannose binding lectin protein deficiency exactly.. could this make me as disabled as I am do you know? (sorry for these big questions!).

    Again, thank you for your help :) I am unsure about putting my trust into this immunologist as he only prescribed me adcal for my vitamin D insufficiency which contains 400iu D3 twice a day.. which I know is tiny for an insufficiency?!
  8. SOC

    SOC Senior Member

    My personal choice is to get killed virus vaccines, but not live virus vaccines. Live virus vaccines crash me for 6 months or more. Killed virus vaccines give me a mini-crash about a week long at the worst. My last flu vaccine (no preservative) gave me no trouble at all.

    You have a different immune situation from mine, so your decision may need to be different.

    I don't know enough about the IgG subclasses to be of any help. Maybe someone else will chime in.

    Have you looked into OI? It is pretty common in ME/CFS and could be the reason you can't be upright much. You'll find lots of info here at PR about them. You could start with this article and follow up by searching posts for more info. I found that Florinef and treatment for tachycardia increased my ability to be upright significantly.

    A mannose binding lectin deficiency can make you prone to infections, which could make you very ill. It depends on how well other parts of your immune system are working and what infections you get.

    My advice would be to see a top medical ME specialist, which is not easy in the UK. If I were in your shoes, I would travel to Brussels, Belgium to see Dr Kenny DeMeirleir. I know traveling is difficult when you are very ill. Neither my daughter nor I could sit upright for more than a couple of hours when we first went to see the top specialist who gave us a lot of improvement. We had to take turns lying down in the back of the vehicle while my husband drove the 6 or 7 hours each way every 4-6 weeks. It was miserable, but very well worth it for the improvement we got.
  9. Ninan

    Ninan Senior Member

    I got better for a month after taking the Pandemrix shot. But others got worse and never recovered. I wouldn't risk it if I were you. Even if I got better that time I'm not taking vaccines anymore. A month of feeling better is nothing compared to a permanent crash. We just know too little about this.
    *GG* likes this.
  10. Jenny

    Jenny Senior Member

  11. EnduringAngel


    "Hampshire, UK"
    Apparently MBL is high in auto immune conditions such as lupus.

    I wonder if this is another ME related finding many of may have, indicating a new auto immune condition.
    Or could be possible missed lupus diagnosis?
  12. *GG*

    *GG* senior member

    Concord, NH

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