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What is the immunologic pattern in CFS?

Discussion in 'Immunological' started by JesseThailand, Apr 30, 2017.

  1. JesseThailand

    JesseThailand

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    Dear friends,

    I am a new member of the forum. Thank you for those who administrate and support this forum and the help been given to so many people.

    I have been sick for about 6 years and now I spend 15-20 hours daily in bed. I'm on the process of finding a correct diagnose.

    In my case I have a consistent immunologic pattern of:

    Lymphocytes: High
    Neutrophil: Low
    Immunoglobulin E: Very high

    Doctors think this indicates a chronic viral infection and over active immune system.

    Let me please make some questions and listen to your opinion:
    1. Can I be immune depressed if my body still produces lymphocytes and immunoglobulin E which shows is reacting to something wrong?
    2. Can I be immune depressed and immune over active at the same time?
    3. Is it not the common pattern in CFS to have low lymphocytes instead?
    Thanks so much for you valuable opinion.

    Cheers!
     
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  2. halcyon

    halcyon Senior Member

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    I haven't seen anything that would indicate this. There are some noted abnormalities in lymphocyte subsets (abnormal CD4:CD8 ratio that flips between the acute and chronic phase) but I would be surprised if this was universal.
     
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  3. tpsss

    tpsss

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    My first blood tests showed low WBC and neutropenia along with a high IgE of 254. What was your IgE level?
     
  4. Carl

    Carl

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    I have had low WBC counts myself but I am not sure about IgE levels. I have had positive IgE reactions to all foods I was eating and many common allergens such as house dust mite, pollens etc so I would expect my IgE levels to be high.

    It is not well known but high dose B12 can help with the high IgE and immune reactions caused by it. It up regulates T-suppressor cells and calms IgE antibody reactions. I have not been able to find the research on this. I read about this on wikipedia where there were references to the research but that has since been removed (suppressed). There can be some negative effects with high dose B12, research done with diabetics suggest that higher than 1mg/day can have negative effects on the circulatory system. I take considerably more than this, around 30x methylcobalamin. I do take some precautions with my circulatory system being both type 1 diabetic and having family risk factors for circulatory disease.

    Other tests that might be appropriate are liver enzymes. Mine every time they have been tested show a slightly elevated level. I do take Tu Si Zi which is meant to help the liver function and liver enzyme so I do not know how high my liver enzymes would be if I was not taking this herb. Tu Si Zi (dodder seed) can help pituitary function and has been shown to increase the weight of the pituitary gland in animals. It does also help the hypothalamus function and kidney/adrenal function effectively helping the HPA axis which is badly affected in CFS.

    You are highly likely to be reacting to your food with undigested food entering your bloodstream due to increased digestive permeability. This can cause the high IgE levels because antibodies are produced to the incorrectly digested food molecules entering the bloodstream.

    A digestive permeability test might show this. Lactulose/Mannitol is often used to test this.
     
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  5. JesseThailand

    JesseThailand

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    Hi! My IgE level average is about 850. It should be less than 100. Indicates mainly allergy but I do not have allergy. Doctors said it could also indicate parasites or inflamation, but I do not have inflamation.

    Doctors do not know. ☹️
     
    MEMum likes this.
  6. JesseThailand

    JesseThailand

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    I just had an appointment with a hematologist. I asked about the CD4:CD8 and she said they can do it here but she feels it would not actually help because "it's just a number the does not indicate anything". Does it sound logical to you?
     
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  7. JesseThailand

    JesseThailand

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    This is an intetesting option! Undigested molecules coming into the blood and having a reaction in the immune system. The test you recommend is quite specific. I do not think I will be able to find it here in Thailand but I will try my best.

    Very very much appreciated your comment.

    Thanks so much!
     
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  8. halcyon

    halcyon Senior Member

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    Outside of HIV/AIDS, the value doesn't indicate anything specific as far as I know, so yeah technically she is correct. If it's abnormal though it would be interesting to know. A lower than normal value can be associated with chronic infection. (source)
     
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  9. JesseThailand

    JesseThailand

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    Excelent article. Thanks for sharing.

    She also told me my lymphocytes high and neutrophil low does not necessary indicate viral infection. So it contradict the other doctor suspect. More confussion for me. How difficult it is for me to find a proper explanation when doctors do not agree themselves...

    I will keep on trying.

    Thanks for the support!
     
  10. alex3619

    alex3619 Senior Member

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    The immunological profiles we understand about ME are about cytokines, and there are three different patterns. Lymphocyte subsets are not fully reliable, and there are no other reliable immunological markers in standard tests. No commercial test for the subtypes is validated yet either. In short, there is no pattern you can be sure of.
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    Do you have a reference for these patterns?
     
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  12. alex3619

    alex3619 Senior Member

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    They have been discussed extensively on these forums, and involve Lipkin and Hornig. All are still experimental and not yet clinical ... and indeed we keep finding more subsets.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Your immune pattern is/was similar to mine. When blood work comes back it usually says a current viral infection. My ige was also slightly elevated but my dr told me that many asthmatics have ige levels in the thousands, so its high but not abnormally high.

    My natural killer cell function was quite low but nk numbers were within normal range. My neutrophils seem to have gradually kept getting lower. My total lymphocytes came down with antivirals which i still remain on. I have gone off antivirals and total lymphocytes have shot up again. Lymphocyte subsets eg cd8 cd4 etc have been mostly high even though total lymphocytes have come down to high normal.

    Ive also felt better on antibiotics. Low neutrophils are usually associated with bacterial infections although viruses can lower them.

    Although retroviruses are unproven in cfsme and the big debacle with xmrv grinded any research in that area to a halt. I think there might be something to this. Although antivirals and antibiotics have helped and stopping them i get worse with blood tests indicating this also, there seemed to be something still missing.

    Out of total frustration of no real treatment and reoccuring shingles episodes which i think indicates suppressed immune function, i started tenofovir an antiretroviral drug. Ive been on it for over 12 months now, im not going to say im cured but its taken me to a much improved and stable level. Once every 4 to 6 weeks i get crushing headaches for about 2 days which i think might be related to shingles as thats where ive had the shingles outbreaks ( also a condition called mollaret's meningitis which sounds identical to cfsme and caused by different herpes viruses such as shingles ebv etc) and i increase my antiviral medication plus a few other treatments directed at shingles virus. This seems to stop this from progressing to anything else and i bounce back quickly.

    I still have sleep problems but not as severe and function ok with this and some aches and pains plus still pace myself to a certain degree but im working 4 days a week and usually do overtime on those days. I have been doing weight training twice a week and starting to push myself quite hard. Very rarely get any sort of pem that a days rest doesnt sort out.

    I dont really know whats going on but i think there could be an underlying virus or retrovirus thats suppressing the immune system and thats why we see many different viruses like shingles, ebv/cmv mono etc as well as ongoing bacterial infections like sinusitis, mycoplasma etc etc. Maybe the retroviral drug is treating these different viruses like ebv and cmv. Maybe its modulating the immune system some how as it can lower certain inflammatory cytokines. Maybe its a combination of the above.

    All i can saying is antiretroviral drugs have made a significant impact on me and other antivirals and antibiotics seem to be secondary helpers. There are others who have improved with antiretroviral drugs yet it seems like theres some sort of conspiracy theory against cfsme. I just cant believe many of the cfs researchers who say infections arent implicated in ongoing issues with cfsme, instead some of these so called gurus are fluffing about secondary issues like inflammation etc thats fine but something is causing it. Many cfsers blood work looks like ongoing infections yet researchers continue to look away.

    I think there are probably many infections going on in mecfsers but one main bug thats stirring up the ants nest. I also think the longer one is sick, the more infections they have and the harder it is to turn things around. Theres something the medical establishment are hiding from us. Its not the fault of many drs working on the ground but higher up the food chain. How can so many people have an invisible illness thats only diagnosed after discounting everything else yet not everything is tested for???

    Cheers!!!
     
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  14. Jemima37

    Jemima37 Senior Member

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    Can I ask how low your neutrophils and high your lymphocytes are please? I have anxiety and my gp has referred me to see a haemotologist and I'm a nervous wreck. All my blood work is fine, Total WBC normal but my neutrophils are 1.79 (range 2-7.5) and Lymphocytes 4.45 (range 1.2-3.65). My gp says they're nothing to worry about and at the moment I've got a nasty outbreak of cystic acne but I'm scared why he's referred me.

    Thank you
    Julie
     
  15. Timaca

    Timaca Senior Member

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    I've routinely had a low CD19 (below the reference range). My CD4 can also be low (depending on the reference range and the lab that runs it). My WBC and platelets have been dropping over the years......

    @Jemima37 ~ I get cystic acne if I take Vit B12 in a large amount. 32 mcg or less a day keeps my B12 level in a good range and doesn't give me acne.....
     
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  16. Jemima37

    Jemima37 Senior Member

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    Thank you. Is shall cut down on my b12!
     
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  17. Markus83

    Markus83

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    In my eyes a IgE that high points in the direction of a parasitic infection. It makes sense to test for ECP (eosonophilic cationic protein). Did you have a differential blood count? Were the eosinophiles normal?
     
  18. JesseThailand

    JesseThailand

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    Hello @Markus83. Thanks for your answer!
    My Eosinophils are normal. Lymphocytes are high. I did not know about ECP, let me find out more about it. Great idea. Thanks for sharing.
     
  19. Markus83

    Markus83

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    There is also a disease called "Hyper-IgE-Syndrome", but I think patients do normally have much higher IgE levels (in the thousands). But only to be sure not to miss anything: I would ask my doc about this possibility. But the "hottest" clue so far concerning your IgE is parasite infection (e.g. intestinal worms; unfortunately, western docs don't know much about it, except the veterinarians).
     

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