Severe brain symptoms and still declining

Aerose91

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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
 

taniaaust1

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I tend to think it isn't just a low blood volume problem because it doesn't change at all based on my postion. Really, the problems with my brain IS my disease. If the problem is mitochondria damage in your brain wouldn't lipids be a potential solution?
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.
 

Aerose91

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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
 

Aerose91

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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?
 

Daffodil

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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.
 

Aerose91

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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.
 

taniaaust1

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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.
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"
 

Mij

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

golden

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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.
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...
 

rosie26

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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.
 

Aerose91

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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.
 
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Martial

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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.
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!
 

xks201

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hi aeros. according to my specialist, CFS and Lyme disease are the same.
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