The 12th Invest in ME Research Conference June, 2017, Part 2
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Likely reason behind my HPA-axis dysfunction

Discussion in 'Adrenal Dysfunction' started by drob31, Feb 26, 2015.

  1. drob31

    drob31 Senior Member

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    I'm kind of looking at things from a new angle now that I tested positive for antiphospholipid antibodies. This is an autoimmune condition that can cause issues such as DVT, cognitive problems like word recall issues, fatigue, and memory loss. It can also cause issues with organs such as the kidney or bladder. It's a fairly "new" disease, and is also known as antiphospholipid syndrome, and some call it Hughes syndrome.

    In any case, I've been having what appear to be adrenal issues since my knee surgery last year. There's no doubt my HPA-axis is out of control, however there was a reason for this and it actually makes sense now. I believe the body is responding to the inflammation of destroyed tissues by increasing cortisol which is anti-inflammatory. Also, autoimmune conditions can have high or low cortisol associated with them.

    My inflammatory markers such as HS-CRP, homocysteine, and sed rate were actually normal.

    The test I used to determine this was the Cyrex Assay #5.
     
    Hanna, Wayne, ahmo and 2 others like this.
  2. melamine

    melamine Senior Member

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    @drob31 - there is satisfaction in finding anything of a cause. Was any treatment prescribed or further testing ordered? Do you believe it explains all of you symptoms or is a secondary condition?
     
  3. drob31

    drob31 Senior Member

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    It's hard to say anything for sure since it's a grey area. The high cortisol may be the thing that's actually causing my symptoms, since high cortisol can cause hypothyroid symptoms.

    I think it can explain mainly things, especially my eye sensitivity, patchy hair shedding, and minor dysautonomia, such as forearm vasodilation. There is an article where the author speculates 70% of people with CFS have antiphospholipid antibodies. This causes "sticky" blood, poor circulation, potentially POTS, and poor oxygen delivery to the brain.

    http://lassesen.com/cfids/familyhistory.htm

    I've seen treatment in the form of aspirin to prevent blood clots, and plaquenil.

    The doctor who put me on the right path is not an expert in this condition, so I will have to find someone else.
     
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  4. drob31

    drob31 Senior Member

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  5. melamine

    melamine Senior Member

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    "We know that not every one with CFS will have a variant of Hughes Syndrome – but we, and our MD(based on her testing of other patients), believe that over 70% of CFS patients do have this treatable condition."

    @drob31 - Interesting that some doctors believe the percentage to be that high - of "a variant". What they mean by variant is the question. They mention markers not being reliable for those who have been sick for many years.

    When I started a course of systemic enzymes at a time when I had been experiencing chronic palpitations for several years, they disappeared quite suddenly and have never returned. (I had also started using digestive enzymes around that time.)

    Anyone with autoimmune stress-type activation of symptoms might find this of interest (from one of your links):

    >Adrenaline, commonly produced by stress, has a very interesting effect on many of these infections – New Scientist reported a 4000x growth over 24 hours with mycoplasma and chlamydia when adrenaline is present. Research from Australia found that a mycoplasma infection will cause viral infection re-activation (producing “mono” that never goes away).<
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I posted a load of abstracts relating to cortisol and ME here, which may be of interest.
     
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  7. drob31

    drob31 Senior Member

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    It makes me wonder if the body is downregulating adrenaline and things that make us feel awake, leaving us fatigued. It is doing so to protect us, however.
     
    xks201 likes this.
  8. drob31

    drob31 Senior Member

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    Those are interesting for sure. The red herring in all of this is what is really causing my symptoms. My APS antibodies may not be causing any symptoms other than the high cortisol---and that's what's actually causing the fatigue, etc.

    The other alternative is sticky blood causing low oxygen levels in the brain.


    The final alternative I don't want to think about. White matter spots in the brain.
     
    Last edited: Feb 27, 2015
  9. physicsstudent13

    physicsstudent13 Senior Member

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    you should get a contrast MRI, thin slice, a CT may be too much radiation.
    I am taking piracetam it's an anticoagulant
     
  10. drob31

    drob31 Senior Member

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    I've been experimenting with aspirin, and AIP diet.

    Do you have antiphospholipid antibodies?
     
  11. physicsstudent13

    physicsstudent13 Senior Member

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    by the way which doctor do I go to and which test is that? I've read that if you take phosphitdalycholine/serine/lecithin you may be able to protect your arteries from heart disease
    I don't understand how my vein could be painfully clotted, perhaps this is due to vasodilators?
    I'm looking at effox as an experimental treatment since I've had hypoxia for 8 years
     
  12. drob31

    drob31 Senior Member

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    I know CFS can present with symptoms of hypercoagulation which can lead to hypoxia. The closest autoimmune disease that resembles this from what I can see is antiphospholipid antibodies.

    If you want help pinpointing an autoimmune issue, this is the doctor I used:

    http://doctordavidclark.com/

    The test for antiphospholipid antibodies is:

    Labcorp: antiphospholipid syndrome comprehensive (501012) 791.4

    The test I used to look for all autoimmune conditions is:

    Cyrex Assay #5
     
    Last edited: Mar 4, 2015
    physicsstudent13 likes this.
  13. Hanna

    Hanna Senior Member

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    @drob31 I have been chronically positive for cardiolipin antibodies since 2000 (CFS diagnosed in 1998), and numbers have been increasing steadily.

    But I havn't received received antiphospholipid syndrome diagnostic by the immunologist I saw several months ago. I do have also positive ANA and weak positive anti ScL70.

    What does it require to be positive for this syndrome?
     
    Valentijn likes this.
  14. physicsstudent13

    physicsstudent13 Senior Member

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    I definitely have asthma auto immune issues, I wondered if it was from taking isoprinosine and antivirals. Do you have poor blood flow to the brain? Sometimes antiphospholipid syndrome can lead to SLE. it is diagnosed with testing of liquid phase coagulation and anticardiolipin antibodies.
     
  15. Wayne

    Wayne Senior Member

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    Hi @drob31, thanks much for posting a link to this most interesting article. I found the references to how long a "massive coagulation cascade" can last after a chemical exposure particularly interesting and noteworthy. From what I can gather, the length of time it can go on is indefinitely.
     
  16. drob31

    drob31 Senior Member

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    I believe aCL antibodies are the most common of the antiphospholipid antibodies. The positive ANA makes me think possible Lupus with secondary antiphospholipid syndrome (possibly).

    As far as being diagnosed, the allopath medical community doesn't like to diagnose something until it is full blown and meets a bunch or criteria. Unfortunately with autoimmune conditions, you can be in the silent phase, reactive phase, or full blown phase. The usually wait for the latter, and even then it's difficult to get the diagnoses. This is why I was using a functional medicine doctor to figure out what was wrong. I'd recommend trying to use the Cyrex Array #5.
     
  17. drob31

    drob31 Senior Member

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    Yeah, thanks for bringing that up. Something as simple as being allergic to perfume and having aPL antibodies could theoretically lead to CFS symptoms.
     

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