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Are you totally convinced you have CFS?

Discussion in 'General ME/CFS Discussion' started by JBoneske, May 19, 2018.

  1. JBoneske

    JBoneske

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    I’m really curious to see who is and who is not totally convinced that they have CFS. If you aren’t 100% convinced, what else could be your possible reasons for having CFS symptoms.
    I just can t let it go and try to keep finding a reason other than CFS because I want something better and understood. Can’t think of anything else to get ruled out. My dr doesn’t know what to test for anymore other than possibly dealing with depression. I let him know that depression is a symptom and not the cause.
    I’d love to hear of other ideas. My last idea was requesting a test for Hepatitis C which doesn’t even match that well other than fatigue and sore muscles and joints and maybe a few other things.
    I’m sure you all aren’t totally convinced you have CFS. What are your ideas and are you going to keep pursuing something else?
     
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  2. Snowdrop

    Snowdrop Rebel without a biscuit

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  3. alex3619

    alex3619 Senior Member

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    CFS? No. Not even ME. The primary problem is we just don't know enough. That includes any doctor you might like to name. The science is not there yet.

    The first probable diagnostic test uses a 1949 test, but was not tested in CFS till 2007. That is the two day CPET test. The findings are unlike that found in any other condition, but they so far are not prepared to call it diagnostic, largely because it takes a lot more than that to prove something is diagnostic.

    Until we know what CFS and ME are, and have diagnostic tests, this will be an issue. What makes it worse is that a huge number of known conditions look a bit like CFS symptoms, and doctors almost certainly do not test for all of them. There are guidelines for common conditions that are confused with CFS, but these are not and cannot be complete. Its worth looking them up though.

    The first big hurdle is this ... if fatigue is the primary symptom then you have the symptom of nearly all diseases known to man. Its one of the reasons doctors are sceptical. So looking beyond that to all the other symptoms is critical.
     
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  4. Diwi9

    Diwi9 Administrator

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    Good question. I accept my diagnosis, but I am still looking for alternate explanations. I'm relapsing/remitting, which makes the situation more difficult because I have experienced reprieve, but it always comes back. Chiari Malformation is one road to explore, another is mitochondrial dysfunction. My illness began with some sort of flu, so I remain interested in a latent infection, as I test positive for a prior enterovirus infection (lot's of threads on this and testing with ARUP Labs through Dr. Chia).
     
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  5. JBoneske

    JBoneske

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    Which conditions that look like CFS that drs don’t test for can you think of?
     
  6. alex3619

    alex3619 Senior Member

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    Look up the exclusion lists from many definitions, and check you have been tested for them. In addition most genetic disorders are not tested for. One issue here is that most genetic disorders have probably not been discovered yet ... so there are no tests. There are probably more than a few other diseases, especially rare ones, that have not been discovered yet.

    Most doctors do not follow one of the established testing protocols, they only test for what they know. Those protocols list a lot of diseases. Most of the definitions have such a protocol.

    For example, I am an encephalitis survivor. They have no tests for that. They have been ignoring it for half a century ... but we have ME symptoms, almost identically, and 40% are disabled, and another 30% partially disabled. The existence of such an issue is already in the patient medical records for some, for others it can be obtained through an initial medical history survey. Sometimes tests are not needed, just the right questions.
     
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  7. JBoneske

    JBoneske

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    Yeah, I’ve been tested for all of that on those lists. There’s gotta be more than 8 of 10 things though to rule out though. What genetic disorders can you think of?
    Well then your symptoms are all from encephalitis then right? How can they ignore that you’re sick and also had encephalitis? What do they expect? Obviously surviving encephalitis has to have symptoms that may not subside.
     
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  8. Webdog

    Webdog Senior Member

    Some common diseases to rule out are listed on the Stanford CFS Clinic website.

    https://med.stanford.edu/chronicfatiguesyndrome/faq.html

    For the lists of diseases, scroll down to the "Do I have chronic fatigue syndrome" section towards the bottom of the page.
     
  9. pattismith

    pattismith Senior Member

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    some roads I have taken to investigate my CFS syndrome and to find explainations

    primary mitochondrial disease
    some genetic metabolic diseases
    thyroid resistance
    low T3 syndrome
    hypopituitarism

    my trial with T3 and prednisolone lead me to the conclusion I might suffer with hypopituitarism.
     
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  10. percyval577

    percyval577 Senior Member

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    I am totally convinced because I have figured out a mechanism and a cure.

    Only it´s a bit complicate and tricky. --- But it´s a strange disease, so what?
     
    Last edited: May 22, 2018
  11. JBoneske

    JBoneske

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    my trial with T3 and prednisolone lead me to the conclusion I might suffer with hypopituitarism.[/QUOTE]

    What did your trial show you? What was the reason for t3? Is it low?
    Have you had scans or labs for hypopituitarism?
     
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  12. lnester7

    lnester7 Seven

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    It is possible to have Comorbidies and other things on top of ME. But if you get worst with excertion and is like ICC Criteria I am pretty sure I have that for sure.
    In my case, the tests that the cFs doctor consider to confirm ( low Nk activities, inmune dis regulation, white brain lesions...) all confirm it.
     
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  13. JBoneske

    JBoneske

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    It looks like natural killer cells are lymphocytes. I noticed that my lymphocytes tests came back below range on two tests. Is there anything to this do you think?
     
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  14. Snowdrop

    Snowdrop Rebel without a biscuit

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  15. pattismith

    pattismith Senior Member

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    My T3 has always been in the lower quarter of ranges, and my TSH in the half lower range.

    My basal cortisol is normal and the stimulation test is normal too but although not high.

    I didn't have ACTH tested, I didn't find a doc interested to find what I am suffering from, and I don't have much time to spend runing after docs. The ones I have visited during my 35 years of illness where depressing and helpless.
    I had head scans in the past that didn't show anything.

    I decided to start a T3 trial at the begining of the year and I discovered that a small dose once a day was able to relieve me from all my symptoms for 8 hours.

    I decided to try a 3 times per day T3 protocol but it failed to help me. In fact if I take more than a dose a day it fails.

    I sticked to the T3 x 3 times per day, and then I happened to add prednisolone one time (because I already knew it was effective to help me, on a one shot basis), and I got relief of my symptoms for 8 hours.

    So now I take T3 and prednisolone (not big doses) about three times per day, and I am quite normal, no pain, no weakness, no headache, etc. only when I wake up I have a slight headache and bad mouth taste that resolve after taking prednisolone.

    I was able to stop Lysine intake and I don't get anymore cold sore. (I was taking it for 6 years)
    My white cells that were rather low are now much better.
    During the first 3 months of this year, I was ill from respiratory viral infections during 2 months.
    Since I started T3 I didn't get any new infection.

    My hypothesis is that a mild hypopituitarism can happen and that my cortisol and T3 deficiency are only mild, with mainly non genomic symptoms. This could explain why I get relief so quickly when I take these hormons, and why my treatment fails if I am missing only one, which takes eventually hours before the stores are depleted.

    The reason of this pituitary disfunction, I don't know,
    maybe a kind of cerebellar chronic infection, or a past head trauma...
     
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  16. JBoneske

    JBoneske

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    Yeah if your TSH is normal and t3 is low it could be a pituitary issue. What’s your T4,
    My TSH is normal and under range T4 with lower T3. Always been that way even when healthy.

    I was tested for Cushings actually at first because of high morning cortisol.
    Could you have Addison’s?
     
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  17. BadBadBear

    BadBadBear Senior Member

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    I am remitting/relapsing with the course of my illness, and at times convince myself I am not sick. Especially if I go through a longer remitting period and achieve around 70% functionality (I never get 'well', just lots better at times).

    Also since the course of my illness seems to be viral, I am not sure if its JUST chronic EBV throwing everything askew or is it something different? And can it really be CFS if it is JUST EBV and nothing more?

    I also have dysregulated cortisol and thyroid hormones, but my thyroid numbers were perfectly normal before I got really ill. Then I got into low T3, sometimes low T4, high RT3, and normal TSH.

    My illness started with high stress and a bout of shingles, and I've never really gotten well.
     
  18. JBoneske

    JBoneske

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    Do you have active EBV, Also if you have high reverse T3 isn’t that some sort of hypothyroidism or autoimmune issue?
     
  19. pattismith

    pattismith Senior Member

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    my T4 is in the low normal half range or something like that.

    I don't think I have Addison, because my potassium is in the low half range, and hypopituitarism can affect only thyroid and cortisol ( not necessary panhypopituitarism)...
    Anyway, I chose to take prednisolone over hydrocortisone, because prednisolone has a slight mineralocorticoid effect.

    Also my trial works well with T3 and predn, so I don't think I need to add fludrocortisone.
     
  20. Murph

    Murph :)

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    I'm not *totally* convinced, but the more I hear about the group of people that have something like what I have the more weight I put on the hypothesis that it's not so simple as a misdiagnosis or cognitive/psychological/processing error on my behalf. I can't rule out either of those last two but I'd put the odds of one of them being right at under 5%.

    You could write a whole other set of probabilities on whether my me/cfs is the same as yours, as his, as hers...
     

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