A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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update to cd8 cd56 cd3 high cd4 low

Discussion in 'Immunological' started by Richard7, Apr 24, 2015.

  1. Richard7

    Richard7 Senior Member

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    Hi,

    back in feb I asked some questions about some pathology
    http://forums.phoenixrising.me/index.php?threads/cd8-cd56-cd3-high-cd4-low.35721/

    The doctor sent me for some follow up pathology two weeks ago. I have not seen my results yet but I just got a phone call from my doctor about the results. Everything was normal.

    I don't know exactly what was tested. On the day I saw him I went straight from his office to pathology and everything he said to me was consumed by brainfog by the time I got home. But today he said that they had tested all the immunoglobulins and (I assume relevant) hormones, and everything was well within the normal range.

    This seems odd as I had issues with anxiety/panic on the way to pathology having to sit down three times on the way before giving in and taking a taxi. I would have thought that the panic would have lead to higher levels of cortisol.

    I have the usual symptoms of sore throats, fevers, tender lymph nodes etc, so I would expect my immune system to be doing something too.

    I'll add the results when I get them next week, but I am at a loss and had to tell someone.
     
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  2. Valentijn

    Valentijn WE ARE KINA

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    @Richard7 - Having brainfog, and "anxiety" relieved by sitting down, suggests that it's actually Orthostatic Intolerance.
     
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  3. Richard7

    Richard7 Senior Member

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    Valentijn

    Yeah I definately have issues with Orthostatic Intolerance. My resting heart rate is gererally in the high 40s or low 50s, standing it is often in the 80s or 90s on bad days. But I have been taking a tsp or so of salt a day, and that has made life much more managable and brought the standing heart rates into the 60s and 70s.

    That is why I tried sitting down when the anxiety struck. I tried tensing muscles in my arms and legs too.

    But I had assumed that the panic, or maybe I should say sense of panic would involve cortisol or other stress hormones.

    Maybe I am just suffering from too shallow an understanding of the biochemistry, and you can have the panic without changes in hormone levels.
     
  4. SOC

    SOC

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    Sometimes what we interpret as anxiety or panic is actually our hearts pounding as a result of OI. First, our hearts start pounding strictly from OI, then that makes us worry, which then makes us think we have anxiety, but it's not a true anxiety or panic attack. Perhaps that's what happened to you. Or not. :D

    Have you tried checking your HR when you are having symptoms? A fingertip HR monitor can really help with that. Your HR might be okay standing when you are not having symptoms, but flaky when you are.

    Taking a bit of extra salt is often not sufficient treatment for OI.
     
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  5. Richard7

    Richard7 Senior Member

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    When I am suffering from anxiety I do find that my heartbeat seems stronger, but is no faster (or not much faster) when I measure it. I also find (using an oximeter) that my %O2 is usually lower 88-93% instead of my usual 95-96%.

    I have heard the argument re the pounding heart and anxiety and I think it makes sense as I have similar issues with sub woofers which can simulate a pounding heart. Though this is slightly complicated by the fact that I am a migrainer also and base is a special type of hell when I have a migraine or am heading towards one.

    On the 10th, the day in question, I was aware of all this and found that each time I sat down I did feel the anxiety dropping away after a few minutes.

    I was also aware of the way that I was looking at my environment, particularly the people in it, to find a cause for the anxiety. Rationally I had established the reason as OI, but some system or other seemed to be looking for threats and ways to escape them.

    I also have extreemly high anxiety when I do buteyko or get into a trance state when meditating. I know that buteyko is meant to change the blood chemistry, so I wonder if it is triggering the same system that is triggered when I am not getting enough blood to my brain.

    (I don't intentionally approach trance states, I have not attempted buteyko since January, feeling like the floor has been pulled out underneath me and I have fallen into a nightmare is not my cup of tea)

    I know I have to chase the doctor re POTS, his focus at the moment is trying to find the cause of my CFS, which I approve of, but I also need to deal with symptoms.
     
  6. Richard7

    Richard7 Senior Member

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    Oh and SOC I should add that the anxiety/panic feels entirely real. I have no pre CFS model for panic, nothing so extreme but I understand that to be the right term.


    I was talking to a counsellor about it and just describing it as anxiety, but she pointed out that it was really panic.


    As I try to write this I find that I am hedging around it and trying to avoid a description. Telling isn't it.


    It is hard to describe, it is a sense of extreme agitation and aversion. When I am out walking this sensation seems to get worse with every handful of steps, I find myself changing my direction and particularly avoiding places with lots of people and places where this anxiety/panic has been bad before.


    Money is tight, but I have often abandoned a trip to the post office or a shop or whatever and caught a taxi home without doing whatever I had set out to do. And done this knowing full well that I would have to come back and do it another day.

    The anxiety is different I need to think more about this before I write about it though.
     
  7. Richard7

    Richard7 Senior Member

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    Ok I have the pathology results, they seem much less extensive than I thought after my phone call with the doctor on friday.

    All the hormones turned out to be two hormones insulin-like growth factor 1 and parathyroid hormone.

    So he was not testing vasopressin or cortisol.

    I wish it was possible to just make a note to avoid brain fog in all future doctors appointments, and never have memories as confused as mine again.

    anyway here are the results

    Protein (E) 71g/L (range 60 - 83)
    Albumin (CZE) 47g/L (range 36 - 53)
    Alpha - 1 3g/L (range 2 - 4)
    Alpha - 2 6g/L (range 5 - 9)
    Beta 7g/L (range 5 -11)
    Gamma 8g/L (range 7 -15)
    IgA 1.33g/L (range 0.70 - 4.00)
    IgG 9.04g/L (range 7.00 - 16.00)
    IgM 0.64g/L (range 0.40 - 2.30)
    IgG1 6.22g/L (range 4.05 -10.11)
    IgG2 3.71g/L (range 1.69 - 7.86)
    IgG3 0.28g/L (range 0.11 - 0.85)
    IgG4 0.44g/L (range 0.03 - 2.01)

    IgF- 1 164mcg/L (range 88 - 210)
    Intact PTH 63pg/ml (range 12 - 88)

    I still don't get the immune stuff. I was personally working on the assumption that this was all viral onset.

    I date the CFS back to 2003, but in 2000/2002 I had lots of throat infections followed by a case of pnumonia and then dyspepsia and more throat infections. I was not at the time diagnosed with CFS, but I remember being stranded for three hours on a park bench without the energy needed to walk home, and I remember the fatigue and feeling like I was treading water and slowly drowning. What I remember feels a lot like a higher functioning CFS to me.

    At the time I changed my diet, did accupuncture, took asian and western herbs (some of which seem similar to the ones Dr Chia uses) and vitamin injections and got better.

    In 2003, I spent 3 months in a bad work environment, got chronic migraine and then CFS. This could be explained as giving a dormant virus the chance to come back and win, perhaps. I also had a virus that covered me in small pink spots somewhere near the end of those 3 months, so maybe it is viruses working in tandem.

    (As far as the doctor diagnosing me was concerned the chronic migraine was a sufficient cause, but that was 12 years ago. )

    In 2013, I had a big improvement which I put down to Wahls and Myhill, but I pushed it too far crashed and have not got that improvement back.

    In an attempt to get back there I have focused on tinkering with diet, eventually switching to a very strict autoimmune paleo in january. And this has led to improvements in symptoms: I don't have dermatitis or dandruff at the moment; and rarely have restless legs. But I have nowhere near the strength and endurance I had in August 2013.

    But In 2013 I was also taking a lot of those herbals, astragalis, echinacea, reishi, codyceps, olive leaf extract and so on. It was only when started reading about Dr Chia that it occurred to me that they might have been significant .

    So you can see I have been working towards an explanation, but I do not know if these immune results put paid to the idea, or are irrelevant.
     
  8. SOC

    SOC

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    @Richard7, has your doctor tested for pathogens? You haven't reported any results, but a virus seems likely based on your labs and symptoms, although I'm sure there could be other explanations.

    If you're convinced your anxiety or panic is the real thing, have you tried the appropriate psych meds for those conditions to see if they help? That might verify the cause of the anxiety or panic.
     
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  9. Richard7

    Richard7 Senior Member

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    This doctor has not, but I have been tested for Barmah Forrest fever, Ross River fever, and EBV.

    As I understand it this pathology was meant to help him work out which viruses to look for and where to look for them.

    But the results are normal.

    He did tell that he was going to do some research to see if some other, more exotic, tests were available privately in Australia and how much they would cost. I am to call him in two weeks to find out.

    I have only a surface understanding of this stuff (if that). I assumed from my doctor's tone and the way he described it as bad news that the whole immune thing was a red herring. (He did not say this explicitly). Just that he was very surprised, he had felt sure that there would be anomalies in my pathology, and that my results were well within the normal range.

    But if these results are still consistent with a virus ....

    I guess I need to get a better understanding of all of this. Do you have a reccomendation of where to start SOC?
     
  10. halcyon

    halcyon Senior Member

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    I wouldn't say that those results are in any way inconsistent with a viral infection. They're all so non-specific that them being normal doesn't really mean much in that context. Your symptoms sound so viral in nature, a lot them consistent with enterovirus as well. I have a confirmed echovirus infection and I've had all the same tests as above and the results were more or less the same (my IgG4 was actually elevated quite a bit). My only other consistently abnormal immune labs are high CD8 and high eosinophils.

    I have a history of anxiety prior to getting ME, but it was nothing like the odd anxiety and panic that I developed after getting sick. It can occur in an overwhelming environment with a lot of visual or auditory stimulus, or it can happen when I'm laying in bed for absolutely no reason at all. I chalk it up entirely to the echovirus I caught as I never experienced anything like it prior to the infection. It's also telling that treating the infection has caused a massive reduction in the anxiety symptoms.

    I'm not sure what testing is available for enterovirus in your country. It might be worth asking your doctor if he can test you for IgM/IgG neutralizing antibodies for Coxsackie B and echovirus, or possibly a VP1 blood test if those aren't available.

    Do you have any intentions of trying the herbal supplements again?
     
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  11. SOC

    SOC

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    Not really, other than to find an ME/CFS specialist who understands how to interpret test results in the context of the illness rather than in the context of otherwise healthy people. It sounds like your doc is a great guy and a dedicated practitioner, but he may be out of his depth. Abnormal immune test results along with symptoms of infection might not be the red herring your doctor is theorizing. The red herring theory is more likely if you had normal test results and no symptoms.

    You might want to talk to your doctor about getting treatment for your OI. Taking a bit of extra salt is often not enough. Once you got OI under better control, some of your symptoms might clear up and you'd have a better sense of which, if any, symptoms remain to be explained.

    On second thought, you might want to take a look at the CFS Road Map for Testing and Treatment put together by one of our members. It might give you and/or your doctor some ideas of other things to look into.
     
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  12. Richard7

    Richard7 Senior Member

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    Re the anxiety/panic SOC,

    I haven't tried any medications. I did talk to my GP (primary care doctor) who is not the doctor who ordered this pathology, she did suggest seeing a psychologist about two months ago. I was all set to do this when the anxiety started to disappear.


    At the time I had accepted the idea that it was psychological, and had been working that pathway with a counsellor for years. I now think it was chemical or physiological.


    My thought is that the anxiety/panic is a reasonable reaction to not getting enough blood to my brain. So the panic I experience when out for a walk is real, but the process of looking at the world and trying to find the reason for that seemingly random panic sees me focusing on the wrong things.


    With the anxiety I felt when I was not out walking I don't know, but sometimes it reminds me of decision fatigue. If healthy people have to make a lot of decisions they run out of the energy to make decisions. So maybe it is a sort of stress fatigue, having to deal with the stress of POTS eats away at my ability to handle other stresses leading to greater anxiety and more frequent panic.


    I have a kind of parallel from my pre- CFS life with vertigo. If I was hiking for some hours in the sort of landscape where it was hard to work out where up was, trying to sort the landscape out would start to feel a strain and then that ability would fail and the world only seem to spin or jump about.


    It felt a bit like a muscle failing.

    (I should add, given the widespread misunderstanding of vertigo, that vertigo is not fear. If it happens when you are somewhere safe, ideally curled up in bed, it can be quite pleasant.)


    I started having issues with panic in late 2010. It was only an issue when I was walking outside. I had issues with general anxiety that increased over 2014 but became a really big issue from late november 2014 to early march 2015.


    I should also not that the massive increase in anxiety in late November was accompanied by a real world event in the form of a dispute with a noisy neighbour, and was followed by a complete change in sleeping patterns where I was waking up at first light with a pounding heart and a full bladder and absolutely unable to sleep or doze when it was light.


    In December I went the psychological rout, saw my counsellor, started meditating, dropped coffee etc. I got some advice from one of my sisters who teaches psychology and does research at that physiological end of psychology, and went strict autoimmune paleo in the hope that reducing the activity of my immune system would reduce my cortisol.


    None of this did much. I felt better on days I had meditated, the Autoimmune paleo seems to have cleared up my dermatitis and improved my gut health. But I still had major issues with anxiety.


    Through January and February I was taking Mg SO4 footbaths that made my muscles feel better but seemed to make the lightheadedness worse. Researching lightheadedness lead me to read about POTS and start taking salt.


    Well more salt, I was at that point where you have a thirst that is only relieved by salt water, and so was already having small amounts of salt everyday.


    At the end of February I started taking betaine HCL; Iodoral, selenium and other mineral supplements, and I started taking potassium gluconate and salt.


    Within two weeks the anxiety was disappearing, at first for an hour or so and then for longer periods. At that time I came to associate the anxiety with the a pounding heart, and potassium and sodium with calming that heart. I also found that I could walk to and from town without much anxiety. Just momentary flutters of a few seconds here and there.


    Friday the 10th was an exception, but I am not free of anxiety, it is still an issue just not as severely or frequently.


    So I feel I have identified the cause, and have found a way to reduce the symptoms, but need a doctor looking at how to completely solve it (if at all possible).


    Sorry this is such a long post, but thanks for asking the questions that force me to read my notes, check dates and think this through.
     
  13. Richard7

    Richard7 Senior Member

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    I am undecided. I was thinking that if the doctor came up with nothing, he said in our first meeting that there was a 50% chance he would, I would go down the herbal rout again.

    At the moment I am waiting to see what he suggests next, as I probably won't be able to afford the pathology and the herbs at the same time.
     
  14. SOC

    SOC

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    @Richard7, it sounds like the results of your methods for dealing with the anxiety/panic are inconsistent at best. Since medications for these conditions deal with the physiological aspects of anxiety and panic rather than the psychological aspects, you might want to consider trying them to see if you get more consistent results.

    OTOH, if it's really just OI-related heart pounding followed by unhealthy thinking about that ("There must be something wrong. Where's the threat?"), then OI meds plus psychotherapy might be a better path.

    Wouldn't it be nice if there were easy answers to all these issues?
     
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  15. Richard7

    Richard7 Senior Member

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    Oh yes, wouldn't it just.

    In truth despite knowing that you have to be your own guru on CFS I was rather hoping that this Doctor would just work it out for me, and I could focus on living.
     
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