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immune related tests i should order for bilateral paresthesias...gloves?

Discussion in 'Immunological' started by waif, Oct 14, 2017.

  1. waif

    waif

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    hi all

    i have ehlers danlos syndrome. my hands have been gloved since 2010, after what i thought was a mechanical injury in my neck/shoulders. the further to the finger tips, the more numb. particularly my median nerve. sometimes i get waves, flares, where i feel needles in my entire body and afterwards my hands are more gloved.

    i had giardia for the last 2 years...first gastro wrote it off as ibs-d at first. switched gastros and dx'd, took tindamax, even though my stool sample came back normal, i still get, TMI, bloating and pencil thin stools.

    i have had mris, multiple emgs, ncvs, physical therapy. i've been completely preoccupied with the mechanical type injuries and i've barely tested my immune system this entire time.

    recently i had some basic immune system tests but i want to test everything that could possibly cause paresthesias, particularly viral/bacterial causes...

    here's the tests i've had so far, would igE or igM show if I still had a parasite?

    c3c 70 (90-100)
    c4c 11 (16-47)

    ch50 36 (31-60)

    RA negative
    ANA negative

    igA 10-2017 188.00 81.00 463.00
    igM 10-2017 174.00 48.00 271.00
    igG 10-2017 1076.00 694.00 1618.00

    i'm open to suggestions for ANY TESTS. doctors tend to blame my neuropathy on eds.

    thanks in advance, please excuse my brain fog
     
  2. Learner1

    Learner1 Professional Patient

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    Did you have a stool test like Genova GI Effects, Diagnos Techs to see what flora and fauna are in your intestines that could be creating havoc?

    Dr. Chia looks for enteroviruses in the digestive system.

    And then there are infections many of us have. Herpes family - HSV1, HSV2, zoster, CMV, EBV, HHV6, HHV7. Parvovirus B19, Cocksackie virus, Ross River virus, etc. Tick borne diseases. Atypical acellular pneumonias, like chlamydia and mycoplasma pneumoniae. The tests vary, but IgM, IgG, IgA, PCR can be done. I've attached a couple of documents that may help.

    And, given your ongoing gut issues, it would be wise to look for nutrient deficiencies, which can make it harder to heal. Genova Diagnostics NutrEval FMV with Amino Acids and Vitamin D is the most comprehensive.

    Good luck!
     

    Attached Files:

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  3. waif

    waif

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    thank you SO MUCH. i've devoted the last several years of my life to obsessively stabilizing my joints etc and it's like my brain can't handle much more. i'm working, barely, part time and i'm in so much pain and completely exhausted.

    i had the cocksackie virus when i was 2 years old. i've never been tested for other viruses.. at the peak of my giardia flare i got a cold sore and i took a TON of valtrex and it didn't go away. took over a month. also when i was a teen i had acne and took a lot of antibiotics and then yasmin *cringe*

    i had a parasite panel which diagnosed the giardia, but i was dumb and completed it over the weekend...i can't remember the company either. it definitely wasn't "fresh".

    i'd rather try to get a test with genova. i've only had 2 giardia tests, last one was with quest.

    xTAG GPP simultaneously detects 14 common viral, bacterial, and parasitic causative pathogens from a single patient sample:
    • Campylobacter
    • Clostridium difficile toxin A/B
    • Escherichia coli (E. coli) O157
    • Enterotoxigenic E. coli (ETEC) LT/ST
    • Salmonella
    • Shigella
    • Shiga-like Toxin producing E. coli (STEC) stx 1/stx 2
    • Vibrio cholerae, cholera toxin gene (ctx)
    • Adenovirus 40/41
    • Norovirus
    • Rotavirus A
    • Cryptosporidium
    • Entamoeba histolytica
    • Giardia POSITIVE

    i'm definitely going to mention those to my immunologist, when i find one. i'm currently with a hematologist. i have a spreadsheet of tests i need. thanks again. i'm so grateful for this forum.
     
    Last edited: Oct 14, 2017
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  4. TrixieStix

    TrixieStix Senior Member

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    Have
    you had skin punch biopsies done to test for Small Fiber neuropathy? If not my advice would be to start there are Small Fiber Peripheral Neuropathy would cause nerve symptoms in a glove pattern. EMG & NCS testing will be normal with Small Fiber Neuropathy as those tests only test large nerves.

    I just had skin punch biopsies done myself at my neurologist office and both came back positive for small fiber neuropathy. All my EMG and NCS testing has been negative and this is exactly what would be expected in someone with small fiber neuropathy. Skin punch biopsy is relatively painless and is considered the gold standard for diagnosing Small Fiber Neuropathy.
     
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  5. waif

    waif

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    hi! no i haven't had skin punch biopisies but the GLOVED sensation definitely fits in with small fiber. it's my median nerve the most but the distribution doesn't make sense when you look at dermatome maps.

    also, and this is eds-related, my left first rib or...c7ish??? some bone on the left side moves around too much and pinches on my brachial plexus/armpit. if i sit for long or bend over i think it gets out of place, like hikes up and i have to jam my shoulder down to get it to settle. that doesn't explain my right side though and it doesn't explain 24/7 paresthesias. 6 months after my hands went numb, shooting pains etc, they randomly regained sensation, but i was on the computer/exercising again and then both my arms "swelled up" and went completely numb AGAIN and have been numb since then.

    I looked through old labs and i had a QSART test at mayo clinic and it came back normal, i think that's for small fiber, prob not as good as biopsy

    another thought i've had which i block out of my mind bc i know everyone irl will judge me as crazy, it's definitely possible i got floxed. i took cipro several times when i was younger for UTIs (in retrospect i think was IC), and i was on the computer a lot. so i know i attributed bizarre nerve pain to a RSI and mechanical injuries, id never think it was caused by an abx. sooooooooo that's terrifying.

    doesn't explain my low c3 and c4 though. i keep going back and forth about whether my neuropathy is related to my immune system or if they're separate. i need the genova GI effects test BAD, i want the 3 day one but i bet stupid aetna doesn't cover any of it.
     
    Last edited: Oct 15, 2017
  6. TrixieStix

    TrixieStix Senior Member

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    You have low Complement C3 and C4? How low? I've been intensely researching complement deficiencies for months now as doctors believe I have a genetic complement deficiency. An acquired deficiency of C3 and C4 at same time is associated with autoimmune diseases such as Lupus and Sjogren's Syndrome.
     
  7. TrixieStix

    TrixieStix Senior Member

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    @waif you should definitely get a skin punch biospy done.
     
  8. waif

    waif

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    my labs are in the original post..my ANA is negative which i would think means i'm a lot less likely to have an AI disease?

    was your skin punch biopsy covered by insurance?

    i have no idea how long my c3 and c4 have been this low. scary thought. i read that if you have AI disease they're low in flares. my stomach was in a lot of pain, i felt like vomiting during the labs. if i have a parasite/bacterial problem, maybe it's good i was tested while i wanted to vomit. lol
     
  9. waif

    waif

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    something else that's quirky
    before my hands went numb i experienced horrible shooting pains up and down both my arms, straight down the middle and "swelling"..i couldn't bend my arms for days afterwards. and ever since then i have to sleep with them straight or else they feel extra heavy the next day. they're ALWAYS numb, but sometimes more numb.
     
  10. TrixieStix

    TrixieStix Senior Member

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    @waif Has your CH50 been tested? Also has your C3 & C4 been tested just the one time? Complement testing is very vulnerable to lab errors/mishandling of the blood specimen and if not handled properly it will cause falsely low results. Low values should be confirmed by repeating the tests to make sure it wasn't lab error.


    Y
    es insurance covered my skin punch biopsies.
     
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  11. waif

    waif

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    yes my ch50 was in the original post, it's very low but in range

    i had no idea complement testing was vulnerable to lab errors but that gives me hope. can you have a dysfunctional complement system and normal immunoglobulin levels??

    i don't entirely trust the lab. for the first set of results, not the complement testing, that was a week later...anyways, they couldn't get blood out of me and my arm was puffed up. major bruising afterwards. coincidentally, my platelets were lower than they've ever been and they've never tested low in my life. i know those are implicated in AI diseases but i think it's more likely an error...

    CBC Component: Result:
    WBC 6.1 4.8-10.8 10^3/mm^3
    RBC 4.46 4.20-5.40 10^6/mm^3
    HGB 14.2 12.0-16.0 g/dL
    HCT 42.8 37.0-47.0 %
    MCV 96 81-99 cu_microns
    MCH 31.8 27.0-34.0 pg
    MCHC 33.2 31.5-36.0 g/dl
    RDW 11.8 11.5-14.5 %
    PLT 47 L 140-440 10^3/mm^3
    MPV 9.1 7.4-10.4 cu_microns
    LYM%* 28.7 20.5-51.1 %
    LYM* 1.8 1.2-3.4 10^3/mm^3
    MON%* 4.9 1.7-9.3 %
    MONO* 0.30 0.20-0.90 10^3/mm^3
    NEU%* 64.4 42.2-75.2 %
    NEU* 4.0 2.0-8.0 10^3/mm^3
    EO%* 1.6 1.0-3.0 %
    EO* 0.1 0.0-0.7 10^3/mm^3
    BAS%* 0.4 0.0-1.0 %
    BAS* 0.0 0.0-0.1 10^3/mm^3

    Iron Panel Component:
    FE 85.0 50.0-175.0 ug/dL
    %SAT 33.9 15.0-50.0 %
    TIBC 251.0 250.0-450.0 UG/DL this is what concerns me. it's consistently low and my hair has thinned rapidly over the last...7 or so years. my ferritin results aren't back yet but they're always in the 10s and 20s. i've never had a normal result and i've read that your body sequesters iron with disease/viruses/parasites. i only had giardia symptoms for 2 years or else i would blame it. most people with TIBC this low have hemachromatosis/high ferritin/inflammation, which i obviously don't have...

    it sucks i'm in a huge rush to order so many tests because i've already blown through my deductible for the year.
     
  12. TrixieStix

    TrixieStix Senior Member

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    @waif In my case doctors believe that I have a congenital (born with it) deficiency of one of the complement proteins (i have to have more testing soon before we can verify which complement protein that is exactly) and I have completely normal immunoglobulin levels. I also have no immune system problems because of it other than maybe a slightly increased risk of developing bacterial infections. It is complete congential deficiency (body makes 0 if it) of complement proteins that can cause severely increased risk of infections (which kinds of infections depends on what complement protein is deficient).

    Before you consider your complement C3 and C4 to be low you need to have the tests repeated to see if you get similar results again. Low C3 and C4 would most likely be an acquired deficiency, however....

    "a congenital partial C4 deficiency (body only makes 50% of normal level) can also predispose patients to the development of lupus. Often in cases of lupus, it can be difficult to discern whether a low C4 level is due to inherent deficiency in C4 or to increased amount of consumption secondary to the buildup of immune complexes as part of the disease process of lupus. C3 and C4 are often both decreased in immune complex disease."

    this is a good overview
    http://www.igliving.com/magazine/articles/IGL_2015-12_AR_Defects-of-the-Complement-System.pdf
     
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  13. waif

    waif

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    thanks, you must be really unique. I read a tiny bit about congenital deficiencies and i was thinking, that must be a tiny percentage of the population? i'm glad you only have it in one protein.

    i agree. i need more tests. lupus doesn't describe me, like at all. i've only had maybe..2 rashes in my life. and i've had one pretty invasive surgery, a revision septoplasty/rhinoplasty that lasted 6.5 hours. and i was fine afterwards, you'd think that would be playing with fire and asking for an infection? idk


    Complete C3 deficiency can lead to severe recurrent infections, as well as
    autoimmunity, but partial C3 deficiency does not appear to have
    any clinical significance......

    Total C4 deficiency often presents with early-onset
    lupus, and partial C4 deficiency can also predispose patients to
    the development of lupus.


    If the initial CH50 is low, the first thing to do is to repeat the test to rule out
    the possibility of an error from poor handling of the serum specimen
    since the CH50 can be reduced after prolonged exposure
    to room temperature.....



    The clinical features of
    inherited complement
    disorders generally present as
    recurrent infections and/or
    autoimmune disorders.
    most common cause of acquired complement deficiency is
    lupus, which in half of all cases will result in a reduced level of
    C2, C3 and C4.


    quick google search brought this up too

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3168207/
    Specimen collection and storage are an important potential source of error. Complement components e.g. C1q, C3, C4 and C5 are extremely labile, so proper sample handling is critical. Prolonged exposure to heat will decrease complement activity and will produce inactive fragments of complement components.
     
    Last edited: Oct 16, 2017
  14. TrixieStix

    TrixieStix Senior Member

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    I think I've read just about everything there is online about complement deficiency that there is over the past months. lol And even I still only have a very surface level of understanding of it as it is a very very complicated system. For those of us with a genetic complement deficiency it is quite difficult to find a doctor who has an in-depth knowledge of it.

    The immunologist I saw a few months ago chalked my low C3 and low CH50 up to a partial genetic deficiency of C3, but I do not agree and I think it may be that I actually have a genetic deficiency of either Factor H or Factor I. A deficiency of either of those results in a significant decrease of C3. Factor H and Factor I deficiency are rare but not nearly as rare as C3 deficiency. Also it's my understanding that a partial genetic C3 deficiency causes C3 levels that are 50% of normal and that CH50 remains normal, but I have C3 levels that are only 30% of normal and my CH50 is low. The immunologist isn't an expert in the area so he referred me to someone who knows much more than him. I see this new doctor in 3 weeks. He specializes in immunodeficiency and rheumatology both and actually only sees patients for 4 hours a week as he is a medical professor now so I'm so glad he agreed to see me.

    In regards to "partial C3 deficiency does not appear to have any clinical significance", this is has actually been recently disputed and it's thought that the clinical significance of partial C3 deficiency has been overlooked or subestimated. There are confirmed cases of people with a partial genetic C3 deficiency developing autoimmune problems because of it, often what is referred to as "Lupus-like illness". But as for severe recurrent infections, no a partial C3 deficiency does not cause that, only a total C3 deficiency.

    Lupus is not the only autoimmune condition that can cause both C3 and C4 to be low. Sjogren's Syndrome is another condition that can cause this, and those with Sjogren's who have low C3 and/or C4 have been found to have a higher Lymphoma (quite a bit higher) and mortality risk.

    Other immune complex diseases: vasculitis, rheumatoid arthritis, scleroderma, cryoglobulinemia.

    As for C2, it's not routinely tested and I'd guess that most people with Lupus have never had their C2 tested. The routine tests are the ones you had...C3, C4 and CH50. I haven't even had my C2 tested. Plus having a normal C2 level wouldn't rule out Lupus. Do you have a negative ANA? If ANA is negative it makes it highly unlikely a person has Lupus as due to advances in testing ANA negative Lupus has become extremely rare (certain genetic complement deficiencies can cause ANA negative Lupus for example).
     
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  15. waif

    waif

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    you are lucky you're speaking to a professor/doctor... i want someone who's intellectually curious to "work" on me, lol. can you run genetic tests on factor h or i? so you should monitor your ana levels.

    My ANA and RA were both negative

    sjogren's is the only ai disease i can relate to...i DO have extremely dry eyes. i'd fail the schirmer test. ehlers danlos syndrome causes dry eyes too. i have less than ideal thyroid levels also. my ft4 is good but ft3 is in range, very low.
    i had my ssa ssb tested in 2011 and it came back negative
    vasculitis, seems unlikely
    rheumatoid arthritis, came back negative
    scleroderma. i have the opposite of this with eds..my skins too loose
    cryoglobulinemia, seems unlikely

    years ago i read that people with eds are 5?x as likely to develop MS...but i don't think that has to do with low c3 c4.

    i have so much reading to do

    @Learner1 https://www.truehealthlabs.com/DNA-Stool-Test-Comprehensive-GI-Effects-p/gen_gi_effects_2200.htm
    i'm seriously debating just ordering this online. i'm going to ask aetna if they cover any of it, seems unlikely. i'm googling to see if it's a reputable site.
     
  16. TrixieStix

    TrixieStix Senior Member

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    My ANA has been tested multiple times and is always negative. My Rheumatoid Factor however is positive/slightly elevated. I definitely don't have rheumatoid arthritis, but other conditions can cause positive RF as well.

    Sjogren's came onto our (doctors & me) this year as I've developed severe dry eyes (my schirmer's test is abnormal) and dry mouth (I take Pilocarpine 3 times a day for it). The dry mouth got to the point that it very disruptive to my sleep, but the Pilocarpine has really helped. I am negative for the Sjogren's antibodies (SS-A & SS-B) but this is frequently the case with Sjogren's as 40% of people with Sjogren's are seronegative. I was told I would need a lip biospy next (it's considered the Gold Standard for Sjogren's) but I don't want to go thru with it as there is small risk of the procedure causing permanent nerve damage in the biopsy area and I've already got enough nerve damage as it is. While Sjogren's can cause low C3 and/or C4, it wouldn't cause C3 to be as low as mine is.

    I made an appointment a few hours ago with another rheumatologist (not the professor) as I decided that I don't want to show up to my appointment with him and make it about me possibly having Relapsing Polychondritis when he is expecting to see me about my complement deficiency issues. There is no way we would have enough time to cover both things plus given his hours he sees patients are so limited who knows how long it would take to get it to see him again. The doctor I've made the appointment with is new to me and she is at a different hospital, but it is one that does Relapsing Polychondritis research. Unfortunately the rheumatologist there who does the RP research has a 5 month wait for appointments. I go on the 27th. If this doctor turns out to be a dud I guess I will have to ask the professor doc to figure out if I have RP or not.
     
  17. Learner1

    Learner1 Professional Patient

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    That seems expensive for one test. I just did a DiagnosTechs test, where they wanted $129 from me and were goung to bill by insurance for the rest. Genova GI Effects was around there last time I did it. Both are good tests.

    There's uBiome, too...
     
  18. waif

    waif

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    i need testing for parasites included, specifically because i had giardia for 2 years. and it's 3 tests stool tests but still, i guess i'll shop around. i mentioned genova to my gastro and she snubbed it. i'll look up DiagnosTechs. with the one i posted, i'd go to save on labs...they're really close by.
     
  19. waif

    waif

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    @TrixieStix gah, i didn't know 40% that is SO HIGH. if my mouth doesn't have symptoms..i definitely don't have dry mouth, would a lip biopsy be accurate? how big do you think the biopsy would be? if my complement tests come back low again i think i need the biopsy. i think i read c3 and c4 can be used to monitor flares or are they always lowish in AI diseases? so like if you got a lip biopsy, and it came back positive for sjogren's, started taking plaquenil, your c3...assuming it's a genetic deficiency of some sort, plaquenil wouldn't help your levels at all?

    let's say my c3 test is actually 70, bottom of range is 90. is that too low also?

    good luck with the rheum. i've had notoriously bad luck with them but it's better to go and fish around to see how much they know. it sounds like RP is extremely complicated to get a diagnosis.
     
  20. TrixieStix

    TrixieStix Senior Member

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    In my opinion (not a doctor) low C3 and C4 levels like yours would fit an acquired deficiency caused by disease. I would really try and get repeat C3 and C4 tests done to see if you get similar results again. For example my first C4 test came back at 12 but next 2 tests came back within normal range and thus my C4 is not considered to be low or abnormal.


    Yes unfortunately seronegativity is very common in Sjogren's. Thus why lip biopsy is considered the 'gold standard' test for it. However lip biopsy is not 100% sensitive so while it can rule Sjogren's IN it cannot rule it out.
     
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