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Severe brain symptoms and still declining

Discussion in 'Cognition' started by Aerose91, Mar 28, 2014.

  1. Aerose91

    Aerose91 Senior Member

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    @Daffodil

    Thank you, and I'm really sorry to hear of all you've been through. I completely sympathize with you about suicidal thoughts- some times it's just so unbearable and nothing has any effect. Its really a lot worse than I wrote about I just simply can not express it.
    I have thought about trying to see KDM as my current doctor is very thick headed and doesn't understand what's wrong with me. However there's just no way I can afford to see him at the moment. Maybe some time in the future I can make the trek- I need something
  2. taniaaust1

    taniaaust1 Senior Member

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    Ive no idea, I dont know much about mitochondria in fixing that. How do lipids help?

    I just saw that I'd read your other post wrong and missed seeing it was "lipid" IV (I'd mistakening thought you were reering to saline IV)... I dint know such a thing existed.
  3. Aerose91

    Aerose91 Senior Member

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    @taniaaust1

    No worries. I believe the purpose of lipid replacement us to repair the mitochondria membranes by supplying your body with phospholipids that it needs such as phosphatidylcholine
  4. Daffodil

    Daffodil Senior Member

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    probably you will need IV azithromycin and rocephin.
  5. Aerose91

    Aerose91 Senior Member

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    Is this what KDM gave you? What bacteria was he trying to treat?
  6. Daffodil

    Daffodil Senior Member

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  7. Aerose91

    Aerose91 Senior Member

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    Do you have Lyme on top of ME? Or treating just Lyme? (I don't mean just... u know what I mean)
  8. Daffodil

    Daffodil Senior Member

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    hi aeros. according to my specialist, CFS and Lyme disease are the same.
    merylg likes this.
  9. Aerose91

    Aerose91 Senior Member

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    Oh, interesting. So it sounds like brain symptoms were the worst for you too. How long did it take you to get diagnosed? And may I ask how you're doing these days?
  10. Daffodil

    Daffodil Senior Member

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    hi aeros. I have been sick over 20 years and diagnosed myself early on, since no doctor I saw knew what was going on.

    my brain symptoms were so bad, I spent years - literally - crying, clutching my head, and rocking back and forth.

    I am better now. I am no longer suicidal or bedridden. I can take care of myself but still am a very long way off from being able to work, even part time...but I think that it is because I have been sick so long

    I have tried antivirals for years and other things. I never would have dreamed antibiotics would work...but they are helping.
    merylg and Valentijn like this.
  11. Aerose91

    Aerose91 Senior Member

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    A question to anyone who is also experiencing such severe brain symptoms- has anyone else gotten a SPECT scan? I got one a while ago because no doctor could explain why I was so bad- even my M.E. doctor.

    I would love to be able to compare my results with those of someone else who has major brain dysfunction. So far I haven't met anyone, or any doctor, that has seen SPECT results as bad as mine.
    golden likes this.
  12. taniaaust1

    taniaaust1 Senior Member

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    My SPECT scan results arent as bad as yours. Mine came up saying there was no abnormalities, thou the researcher who was doing the study in which I got it done for looked at them, said that when compared to the control group (sex and aged matched) none of our results were as good.

    My only brain scan thingy which comes up abnormal is my EEGs (2 out of 3 over the years Ive had this illnesss, showed abnormality.. "non specific abnormality"
  13. Aerose91

    Aerose91 Senior Member

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    I also have abnormalities on my EEG, it shows "mild diffuse slowing"
  14. Mij

    Mij Senior Member

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    @Aerose91 have you thought of or tried to skype Dr. Hyde to interpret the results and consult with your ME doctor?
    golden likes this.
  15. golden

    golden Senior Member

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    Clear Light
    I am not in any way trying to detract from how bad your brain scans and situation is, and i would have loved to have had proper testing myself and seen Dr.Hyde.

    But, i have come across an awful lot of severe brain damage cases recently and they have recovered a lot more than the Doctors thought was medically possible.

    One such case was in a coma and tge doctors said his best case scenario was he would wake up and be a 'vegetable' - the BEST case scenario.

    That was evidence based advice from the top US neurosurgeons.

    However, this guy woke up and recovered! Could walk talk think etc.

    I think healing is always a possibility...
    Martial likes this.
  16. rosie26

    rosie26 Senior Member

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    I think a lot of us feel like we have brain damage - I wish I had been able to afford extensive tests on my head in the severe years. Perhaps it is possible that what feels like damage, may be reversed with possible future treatment -
    I hope so.
  17. Aerose91

    Aerose91 Senior Member

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    @golden

    That was a great story, thank you for sharing. To be honest I don't believe that I have irreversible brain damage- my MRIs are clear which is a good sign but the dysfunction is shown on SPECT, EEG and QEEG. Based on spontaneous remissions I have seen I do believe that this dysfunction is curable in theory, but in practice is much harder.

    @Mij

    Funny you say that, I contacted Dr Hyde's office about 6 months ago right after I had my SPECT and they just wrote me back 2 days ago offering a Skype appointment. If I can get the money I may very well do this to have him interpret my results.
    Last edited: Apr 15, 2014
    golden and Mij like this.
  18. Martial

    Martial Senior Member

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    Low blood flow and slight inflammation can give all the effects of feeling brain damage, without actually having any severe damage or long term effects. Most people with Lyme or Chronic Fatigue seem to deal with some degree of hypo perfusion, and for some cases inflammation of the brain, though hard to catch on MRI, Doctor's say it is much easier to find inflammation using the CSF by means of taking blood from the spinal cord. A doctor almost did this to me but I declined because it seemed unnecessary and they said it would reverse itself with treatment anyways.


    @golden

    That is an awesome story thanks for sharing! I met a guy at work the other day who had a brain aneurysm ten years ago. During that time after the accident and the sheer miracle that he survived he had to learn how to talk, walk, use his brain, move his body, etc.. Everything from scratch again.. You would NEVER be able to tell either! He was extremely intelligent, quick witted, and very energetic, no long term effects at all! I was blown away and so motivated for my own recovery from this!
  19. xks201

    xks201 Senior Member

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    That is possibly the dumbest statement I have ever heard. I wish all chronic fatigue was lyme. Not everyone with CFS tests positive for Lyme. Must be nice of your doc to live in such a simple universe. lol
  20. Thinktank

    Thinktank Senior Member

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    He finds lyme in about 90% of his CFS patients. I know Daffodil's doctor, he's all but simple lol.
    Sushi likes this.

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