Extensive immune system tests?

Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Sep 2, 2010.

  1. karynwolfe

    karynwolfe New Member

    Hello everyone. It just hit me that I rarely make a post on my own these days... Oh well, that's irrelevent... Just look at me rambling already, lol!

    I have severe M.E., and over the past four years I've also accumulated a host of secondary infections--Lyme disease, bartonella, mycoplasma pneumonia, and those are just the ones I KNOW OF. But it's hard to get a doctor to take you seriously when they can't see what type of immune dysfunction you specifically have. Telling them "my immune system is dysfunctional" just doesn't cut it unless they can see exactly what TYPE of dysfunction. You can't blame them, really. If they mess up and harm you due to lack of proof, explaining why they did what they did, they could lose their right to practice...

    I've ended up in the ER twice in the past eight months and they cannot understand why these usually meaningless infections are reacting the way they do in my body, and causing such severe symptoms... Therefore! I was thinking I'd see if my doctor would order more extensive tests, such as those checking my natural killer cells and CD4/CD8 ratios. Maybe if something shows up, people will take me more seriously, should I (God forbid) end up hospitalized again.

    Has anyone here has more tests on their immune system besides a regular CBC (which usually shows nothing)?

    Thanks you in advance; I'm starting to get desperate to find something concrete to show people :((

    [This Message was Edited on 09/02/2010]
  2. heapsreal

    heapsreal New Member

    i suppose tests are slightly different in other countries (Im in Australia)but, i would get a lymphocyte sub set test, this will check the numbers of most of your lymphocytes including cd4/cd8 ratio and natural killer cell numbers, not function. so it would be good to get a seperate lymphocyte function test which does your natural killer cell function. Another test i have had that has shown abnormalities was Specific Proteins(master) which measure immunoglobulins IgG, IgA, IgM.
    But most gp's probably wouldnt understand them or no how to treat abnormalities, but atleast u got info showing immune dysfunction and when u find a good cfs doc, it will be less he has to test u for.

  3. Tizz

    Tizz New Member

    For the most part, what they're doing is RULING OUT autoimmune diseases as a cause of your symptoms. And there ARE some auto-immune diseases that people with Fibro and/or CFS often suffer from. Things like hypothyroidism.
  4. simonedb

    simonedb Member

    an interesting immune one I had was the old cfs full panel at VIP/redlabs in early 09.
    Found out my natural killer cells are low, one is high, my elastase and rnase is high, igg was abnormal and my doctor and a researcher at university said it could account for "fatigue" could mean viral infection of some sort. I just want to know what sort! thats the harder part of find out it seems as those tests like lyme CpN etc can't always find it.
  5. karynwolfe

    karynwolfe New Member

    heapsreal: I have a really understanding doctor, if she doesn't know what those tests are (and she might not), it should be easy to get a referral to a physician who COULD do them. I think I have a history that would warrant them...

    Tizz: That's a good point, I've definitely had my share of ruling out things; just had my thyroid checked AGAIN less than a week ago. My ANA always comes back normal but who knows what more specific tests could show.

    simonedb: it's interesting that you NKC were low, too... I hear about that so much and that's why I want to have that one done, definitely. Maybe I can get the function tests, too, like heapsreal mentioned... and see what this igg is about

    Whatever happens I will be sure to post any abnormalites found, but would still appreciate any more input from the board members :)
  6. heapsreal

    heapsreal New Member

    in reguards to natural killer cells, my numbers have always been within normal range but function is poor, other lymphocyte tests i have had have always been elevated, indicating some type of chronic infection which my doc speculated as cmv reactivation and then went on antivirals which have helped.

  7. kat0465

    kat0465 New Member

    those docs have to dig deeper into your immune system to find those abnormalities, and they are there!

    your NK cells are a place to start, when i first started going to my cfids doc, she said exactly that, if you dig deeper you will find the problems.
    i think one of my tests she does to see what my immune system is doing is called a cyclic amp, ill look on my papers to make sure.

    ooh and she tests my ebv and hhv6 titers from time to time depending on my symptoms. at the moment they are really high, she calls them chronic now :(

    also atp levels, cortisol too. if you have None or very little of these, i dont know how a dr would expect you to feel normal and healthy cause thats what gives you energy to even function.

    No NK cells, your body can't fight off the bad stuff. I mean Helloo! you would think dr's would kinda get it after 10+ years of school. But most don't care unless its a major organ they specialize in.

    i had one cardio dr tell me he did't want to hear anything about my Fibro, Cfids, Hyeterectomy, or any of my FEMALE probs!!! all he was ther for was my heart.
    well, in my opinion they are all related, so i told him to shove his stress test, and walked out the door.
    i wont give him all that $ to be insulted and then put me more in debt for him to poo poo all the other stuff.
    keep digging, and if your paying for the tests, they should have no problem running them.

    Good luck,
  8. karynwolfe

    karynwolfe New Member

    Hello, I thought I would post an update. She agreed! And I'm having the following test done:

    *** Immunoglobulin E
    *** CBC
    *** Sed Rate
    *** Immunoglobulins (A, M, G)
    *** Immunoglobun G Subclass Panel
    *** Streptococcus Pneumonia IgG AB
    *** Diptheria Antitoxoid Antibody
    *** Tetanus Antitoxoid Antibody
    *** Haemophilus Influenza Type B Antibody
    *** CMP
    *** C4C
    *** Lymphocyte Mitigen Screen
    *** Lymphocyte Subset Panel

    Hopefully SOMETHING in there will come back as showing an abnormality???

  9. heapsreal

    heapsreal New Member

    good on ya karen, i hope something shows to help give u validation, keep us all posted on your results. I think something will show in the lymphocyte testing.

  10. simonedb

    simonedb Member

    karen and others....question for you guys

    so I just saw my doc today, my pc, nice guy, in a mainstream setting and he is overworked though and not easy for him to order obscure tests without reason. when i first started with him a couple years ago he was open if I paid out of pocket to doing redlabs/vip cfs panel which showd I had some cfs biomarkers like high elastase and rnase and low natural killer cells, but he didnt really have a suggestion on what to about it other than work on my gut as I had IGG issues too. Since I showed in past on test that have been exposd to hhv 1 or 2 at some point he is willing to let me play with valtrex if I want but I havent taken it for long as it either makes me herx or kick in mcs.

    anyway I saw him today, and I had gone over all the latest research and my medical history and composed speeches ahead of time of what I wanted to say, and when I really thought about it, I guess what I was hoping for was suggestions on how to dig deeper, like what could we do to figure out what might be causing my immune abnormalities. He didnt think it is worth it to do all the infection/viral testing like at VIP or hhv 6 because he hasnt seen any of his cfs patients get much better trying antibiotics or antivirals and plus I have severe mcs and end up not tolerating a lot so he seems more like don't bother. I have had this 20 years and have set up a couple things that work to make me more comfortable and have a reduced work schedule with his support, but I told him my concern is that as I age it gets harder to work and I am trying to be proactive. I didnt push him today as I am not sure what i want to put energy into right now. If I push him for anything he would probably do it but I want to make sure its worth it, he's under managed care pressure. I have another doc I can go to for tests if I pay out of pocket and I did that and am waiting on xmrv test. not sure what I will do different though if thats positive.

    anyway, my question for you guys is....why bother? I mean I totally understand why you want to,but today was sort of a reality check, he sees a lot of fibro and cfs people and so I sort of took his word for it, that he doesnt see any huge benefit to pursuing these intricate immune tests for cfs peeps as he just hasnt seen the pay off. From what I read there is a lot of controversy over whether hhv 6 and cmv sort of stuff is significant or worth treating.
    I think w/the xmrv I will feel more confident about maybe pursuing something as the research is getting to be more there with it, but I guess it isnt on the treatment for it actually. I am intrigued by candace pert's peptide t for cfs possibly down the road though, seems less harsh and she is so smart.
  11. karynwolfe

    karynwolfe New Member

    For me the "why bother" is because every time I end up in a dire situation they ask me what kind of immune system dysfunction I have.And every other doctor who I see about my infections says that these bugs have no reason to affect me like they do, unless I have immune dysfunction.

    On neither account can I tell them exactly what TYPE of immune dysfunction I have, so they cannot take me seriously, cannot even begin to take the next step without anything to go by. It's as if I were just talking out of my ear, without any proof to give them.

    It might not mean much for someone who can function, but for those who are slowly losing life, you have to grab at whatever piece of information you can, that could possibly be a piece of the puzzle.

    There may or may not be anything I can do about the immune system problems. If these things are caused by underlying retroviral infection, there isn't any real treatment for that yet, and it would suggest that even WITH treatment, you'd still have to battle each infection that you've picked up, individually. I'm already on herbal anti-retrovirals that help me greatly, but ultimatley I think it comes down to battling the individual things (and btw, battling the possible retrovirus is one of those things).

    I want the immune system tests, one, for a reference point in case I have them again in the future, but two, and mainly, so maybe someone with experience will understand why my body is not behaving how it should. Even if they don't understand my disease, they can see the effects of what it's doing, and give me their best attempt at serious care instead of an IV drip and then sending me home.

    As per your HHV6 and CMV, I tend to agree. There really isn't anything to be done about them, except try antivirals to bring their levels down, IF you show active infection. I'm sure the 30% of people who experienced improvement on Ampligen would definitely say it was "worth it."

    One route I do plan to go after, though, if my doctors refuse to or otherwise cannot help me, is do some research on herbs that can potentially modify my specific immune system abnormalities. I'm already on one, Houttuynia, that takes the immune system reversal that happens in M.E., and changes the Th2 response BACK to the Th1 response where it belongs. We'll see what happens.

    You can't fight something if you don't even know what's there. Once you figure that out, you can make a gameplan, with or without pharmaceuticals.
  12. heapsreal

    heapsreal New Member

    how many cfs patients has your doctor treated. I ask this as he says he hasnt had any success treating infections in cfs, i just wonder if he tests enough/appropriately to know what he's treating. I think testing validates what is wrong with us, its and unnerving to feel ill for so long and not know what is wrong, u wouldnt know if it was cancer, ms etc and i think is safer to test then like some docs who just label them depressed, easy to miss something treatable.

    I get regular lymphocyte testing and i have possible cmv reactivation, i say possible as i have tested positive for past infection but have chronically elevated lymphocytes which indicate my immune system is fighting some type of virus. Without this testing i wouldnt have been picked up for this. Also i was given a theraputic trial of famvir(antiviral) which helped me alot and lymphocyte testing showed corresponding improvements with my symptoms. Now after 12 months of famvir, which is expensive i decided to change to valtrex as it was cheaper. On valtrex i didnt seem as well as on famvir and felt like i was going backwards, after 6 months on valtrex i had another lymphocyte test done and they were all sky high, so my symptoms werent in my head but validated by testing, this also helped us realise that valtrex wasnt working and i needed to go back on famvir. Its been 3 months now and im feeling much better, i have had another lot of tests done but havent got results yet.

    Without appropriate testing i would still be wondering around in the dark, feeling worse and probably unable to hold down a job and support my family. So i think its a big call saying not to do more indepth testing.

  13. simonedb

    simonedb Member

    this is helpful for me to hear, thanks you guys. I was/am sincerely wondering.
    I am not satisfied with my level of functioning, and besides the varying degrees of pain I can get, mostly in my spine/neck/shoulders, really the worst symptom is the oxygen hunger thing, and he says he doesn't hear that one a lot and isnt sure what to make of it. Maybe more of his people have fibromyalgia and I think some of the cfs people he has maybe are on full disabiilty so maybe they don't complain to him about the oxygen hunger as they don't have to be somewhere at a certain time i really don't know, or maybe he was giving me a little bit of the brush off, on the outside I might look like I am doing better than I am, I don't have a lot of external dramatic health problems or things that put me in the ER.

    Do you guys get that oxygen hunger thing? to me that is super frustrating, because pain can be attempted to be dealt with in dif ways, but if I feel like I am suffocating and hit my wall I have to lie down or I feel beserk inside, its too uncomfortable and I just don't feel I can function at a safe level, its like pushing oneself beyond the end of the triathalon.
    Does CMV cause that at all, like what things happen to you heapsreal that its harder to work unless you go on an antiviral.

    I have felt actually that the valtrex helps my oxygen hunger a bit, I did another trial this summer and cut the dose down because last year taking one a day consecutively almost made me go to the Er cus the side effects were scary, so this time I pulsed it, half of one every other day, seemed to improve my stamina but increased my pain, and then I had to get a root canal so got sidetracked off it and now I am not sure when/if will go back on it because a little afraid to mess with my immune system when I am not sure whats wrong.
    I did rule out mycoplasma and cpn this summer at VIP and my lymes at VIP was indeterminate so don't know what to do with that. I am open like karyn to considering herbal stuff and sometimes take lysine if getting the weird dermatitis thing I get on corner of mouth, chelitis.

    sigh, dunno what to do, as willhave to pay out of pocket it looks like if want to get more into this w/a doc outside of my network. I feel reluctant to push my PC guy right now since he is not into it because I just feel more self conscious if stuff would come back negative, like he might get tired of a wild goose chase or something......
    [This Message was Edited on 09/14/2010]
  14. simonedb

    simonedb Member

    but anyway congrats Karyn on being able to get the tests I would if they offered to have ins pay for it. I forget, are you in US w/what kind of insurance?
    what are your worst symptoms, like when you get that saline drip what is going on that you get it? I am in the phase or have the type of cfs where I don't get sick much anymore, like colds or flu, but i can tell when my body is fighting stuff off I feel more malaise or pain but not like runny nose or sneezing or something easily quantifiable, maybe sore throat sometimes.
  15. heapsreal

    heapsreal New Member

    Yes, i sort of know what u mean by air hunger, sometimes i get over exerting myself, seems more then just out of breath. Im thinking it might occur for reasons similar to yawning, we usually yawn as a way to get a rapid increase in oxygen, so might be like this. Its all probably just because of an increase in energy demand having to put up with pain etc. I find pain tires me out quickly as do most people. I do have times where my head feels funny and i need to lie down and it may only be 5 minutes but after doing so im right for awhile, possibly related to orthostatic intolerance, which is where the brain isnt being perfused as much as it needs and lying down helps with this perfusion.

    CMV is another herpes infection like ebv/glandular fever, a normal immune system normal supresses it but in cfs these viruses can reactivate which is what happens with me, antivirals dont kill the virus but stop it from reactivating and lowering its viral load. These infection feel like any other virus, aches and pains, headaches etc etc and the longer u have it the more it can run u down. Valtrex is effective against ebv but not that great for cmv, famvir isnt recognised to be that effective against cmv but in my own experience and from what i have head from others it has helped, even heard it has lowered viral titres of hhv6, so i think this drug famvir has a broader range of activity then what alot of people realise.

    If valtrex feel like its helping , its worth persuing, but i have found it takes about 3 months to really feel if its helping and a good solid 6 months to convince u its doing the job, but its a drug that u need to keep taking. I have an internet friend who has been on valtrex now for 4-5 months and has had good improvement. The only real way to know is to try it. Look into dr lerners studies on antivirals in cfs.

    Even though your negative to cpn and myco etc sometimes its worth a theraputic trial of antibiotics like doxycyline and see how u go. it is abit of a trial and error and sometimes cfsers can have multiple infection eg ebv and myco etc.

    Its worth finding a doc who is switched on to cfs, but i would still keep your current doc onside as they can be helpful with other prescriptions.

    hope this helps and gives u some positive options, it can be frustrating, if u got anymore questions dont hesitate to fire them my way.


    ps, if antivirals are expensive for u, look into taking a drug called probenecide as it can be used to increase the blood levels of antivirals and antibiotics and need to take less antivirals , so save money.
  16. karynwolfe

    karynwolfe New Member

    On my Lyme forum they always talk about Babesia (tick-borne parasite) causing "air hunger," but honestly, multiple infections can cause this and shortness of breath was one of my first symptoms when the M.E. struck, that has yet to go away. However, things I have since acquired such as mycoplasma pneumonia, bartonella, and Lyme, have all made that very very worse, to the point that I now have an oxygen machine for severe episodes. With the combination of being unable to get enough air, and that M.E. can affect one's breathing muscles, it's not a pleasant situation!

    You should go to Lymenet.org and post your Lyme results to the "Medical Questions" board. "Indeterminate" almost always means a positive to someone who is experienced in dealing with Lyme. My results are sero-negative but I still have it, and it complicates things severely. Maybe your doctor can even give you a few months of Doxycycline to try out? If it makes you worse at first, you'll know it's trying to kill something. They give it out easily for acne, you'd think they'd give it out for something more serious like systemic disease...

    I dehydrate at the drop of a hat, is why I usually end up on a saline drip. I am in the US. My symptoms are typical M.E. symptoms (especially muscle weakness) but I also have flare ups depending on which infection is rearing its head. What ends me in the hospital is sinus tachycardia with arrhythmia, dehydration, and immune system "activation" without any "identifiable cause," low oxygen levels, fever, etc. etc. It's always on the day of an infection flare.

    Should you choose to join LymeNet it shouldn't take long to find me there :)
  17. simonedb

    simonedb Member

    you guys for the info!
    please keep me posted on yr progress(es)
    I may ask more questions later, now a dvd beckons....
    but perhaps I will fund some more testing.....sigh, wish it was easier to get managed care to do it

    hey when will WPI be open to public? I imagine they will be able to do all that sort of testing as well as the xmrv......
  18. karynwolfe

    karynwolfe New Member

    Thanks to joan for reminding me to update this old post. I'm mostly stealing my writing from LymeNet so I won't have to retype. Ironically someone had to remind me to post there, too! Lol

    My IgG subclasses 2, 3, and 4 are deficient; my Complement C4 is borderline (low), my CD4 count is borderline ELEVATED, and my sed rate is.. 5? (That's technically low, for my age, and much lower than it was the other times they've checked it so I'm not sure what changed...?)

    My lymphocytes were actually very activated! Suggesting fighting something. I tend to think of viruses, but I know lymphocytes/natural killer cells protect against other types of intruders as well. I'm not sure if their FUNCTION was measured, but I do know that I have a relatively increased number of them, haha

    I was rather relieved to see that, actually: I just hope it means my body is trying, especially in comparison to two years ago, when it was just sitting there, being attacked and not responding at all; my lymphocytes were very low

    (I also wonder if this attack-mode has anything to do with my new herbs? Because they do help me a great deal... That, and since starting antibiotics my immune system has "woken up" and been trying to deal with everything I have.)

    Unfortunately, even if it's useful for me, these things are very minor to most physicians (i.e., not abnormal enough to warrant their attention) so I doubt I've completed my task of getting something significant that others can understand...

    Sigghhh. I think this is the most my insurance will cover

  19. heapsreal

    heapsreal New Member

    lymphocyte sub sets is what i get and there always elevated, this means my body is trying to fight some type of infection. If your cd8 is elevated this is common in reactive ebv or cmv but not the only cause, being positive to cmv plus high lymphocyte cd 8 is why i started antivirals, the antiviral famvir has some effect on cmv as well as good effect on ebv. These numbers came down with antivirals, this helped confirm it was cmv, plus my general cfs symptoms improved. Even though your lymphocytes are active it doesnt mean your body is winning the fight as my tests pre av's were always elevated and climbing over a 2 year period, only coming down with famvir. So i think your a good candidate for antivirals, good luck.

  20. karynwolfe

    karynwolfe New Member

    My CD8 seems to be within normal range; it's my CD4 that is up there!

    I was tested for CMV at the onset of my illness and didn't test positive, but whether or not I'd have picked it up since then (a decade ago), is anyone's guess. I probably do have EBV, but haven't been tested recently... Maybe I should ask my doctor about those?

    Thanks for your insight heapsreal, I appreciate it =)

    I would almost hate to have to get tested for CMV and especially EBV, because that means I'd have to stop my herbal antivirals! I was off of them for two weeks when I had this blood drawn. Olive leaf extract is very powerful, and Houttuynia is known to suppress herpes viruses (of which EBV is one). What to do, what to do. I'm so tired of stopping my medications just to try and find things...

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