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Severe altered consciousness

Discussion in 'Cognition' started by Aerose91, Oct 21, 2013.

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What are your most persistent symptoms

  1. Mental

    5 vote(s)
    55.6%
  2. Physical

    4 vote(s)
    44.4%
  1. Aerose91

    Aerose91 Senior Member

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    Hi everyone, this is my first post here and I am desperate. I'm not sure if I'm in the right place for this question but I'll try anyway.

    This started for me in March when I took one pill of Phosphatidylserine. I went to bed that night and woke up soon after with a major panic attack. Immediately from that point I dissociated badly, had severe memory and cognitive loss, horrible headache, bright light sensitivity, nausea and a bunch more.

    The next few weeks I developed joint pains, flu'ish symptoms, POTS, swollen lymph nodes and extreme exercise intolerance. I went to see DR Enlander in NYC and he told me I definitely have M.E. And it looks like I got it from encephalitis. However the viral assault on my brain hasn't gone away.

    Before this i was a personal trainer, now my exercise intolerance is so bad that just going to Dr Enlanders office caused me a HUGE permenant relapse. It made my dissociation and level of consciousness got so much worse that I have now lost all touch with realty (even being dissociated from it), have no feeing of time or existence as a whole and is starting to get so bad my brain can't even feel anything wrong with me at all.

    I can't even closet eyes anymore and picture myself when I was healthy because I can't feel it. I have zero anxiety or depression because I feel nothing. I can't feel where I am now an compare that to where I'm supposed to be. I can't even feel what's wrong with me anymore because I'm floating too far in this oblivion.

    It is an absolute nightmare but my brain damage keeps progressing. Some days if I as much as walk down the flight of stairs I will get a relapse- but every time this happens its permenant. My body will eventually get better but my brain never does.

    Also, if I overexert at all it won't hit me until I'm sleeping when I will be woken up by intense nerve pain, and a racing heart. Then afterward my brain will have pulled back even more. I was admitted to Yale Hospital for 4 days and they found my ANA test to be negative, ESR was 5, slowing on my EEG and found a few white blood cells in my spinal fluid.

    However, all of the viruses came back negative (didn't test for HHV6 in my CSF tho) and I had an MRI and MRA which both came back negative. They think I may have neuro inflammation in my brain so I'll be getting a SPECT scan next week. However, as good as it is that the scans are normal it doesn't big me any answers or treatments.

    I'm absolutely desperate for this to stop. My psychiatrist told me once touching on psychosis and I believe him. Dr Enlander put me on Valcyte because I have HHV6 and we suspected HHV6 encephalitis, but after 5 weeks on it I'm still getting worse.

    Has anyone heard of anything like this? This is in no way, shape, or form brain fog. It is fictional rain damage and a permenant altered state of consciousness that doesn't fluctuate- it only gets worse. Anyone get ME from encephalitis and then have progressive brain damage? I'm desperate for this to stop and start to heal my brain. I would I've to hear from someone else who may have been through the same thing. Thank you

    Aerose
     
  2. SickOfSickness

    SickOfSickness Senior Member

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    That's terrible. So sorry you are going through this.

    I am only guessing here. It seems to me like the brain "damage" and the ME/CFS are separate. Maybe caused by the same trigger or the brain problem led to the ME/CFS.

    I am curious what other medications or supplements were you on, and if you can think of any other possible triggers (in the weeks before it started).
     
  3. Aerose91

    Aerose91 Senior Member

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    Thank you for the reply and yes, it is God awful. The reason I think it's correlated is because anytime I overexert (the fallout from going to New York was tremendous) it severely reduces my brain function further. My brain condition seems to be correlated with energy expenditure however even if I lay down all day and do nothing it still seems to progress, but not as quick.
    Nothing happened prior to this to give me any leads. The only thing is that I have/had adrenal fatigue which is why I took the PS. however, through the duration of the adrenal fatigue I never had anything even remotely close to this happen. I had brain fog and I know what that is like and this is most definitely not that.
     
  4. PDXhausted

    PDXhausted Senior Member

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    I'm so sorry you are going through this. I don't have that symptom, but I'm wondering if you've tried any anti-inflammatories so far? Are there anti-inflammatories that cross the BBB?

    When I crash, I get a real severe sensitivity to sound and light, which I suspect is some kind of neurological inflammation though I'm not sure. The only thing I've found so far to help is alpha lipoid acid, which is supposed to be neuroprotective. I don't know if that would help your situation, but thought I'd mention it.
     
  5. Aerose91

    Aerose91 Senior Member

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    Thanks PDX

    Yes it's so bad I don't even know how to describe it. It's like my brain feels so little I can't even feel what's wrong with me. I close my eyes and try to picture "normal" life but I can't even conceptualize it.
    I was given dexamethasone, a strong steroid, but had a bad reaction to it so I had to stop. I'm on low dose naltrexone now and haven't seemed to find any problems with it but nor do I feel better. I take fish and coconut oil as well. My diet is really awesome an I rest a lot but still symptoms persist and progress. Is it really odd to have symptoms just progress on their own despite rest?
     
  6. PDXhausted

    PDXhausted Senior Member

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    I'm assuming the CSF test ruled out anti-NMDA receptor encephalitis?
     
  7. Aerose91

    Aerose91 Senior Member

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    I'm not sure, what is the test for that specifically? I'm pretty sure they tested me for antibodies in my CSF and it came back negative but no specific tests for NMDAR or VGKC. They tested for viruses, Lyme and bacteria.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Aerose91

    I do know an ME patient who has symptoms similar to what you are describing. She also has Bartonella which does usually affect the brain. Borrelia (Lyme) is also known to.

    Have you had "good" tests for these infections? Elisa and antibody tests are not always clear.

    Of course the cause of your symptoms may be very different but it might be good to be tested. These infections can remain dormant or stealth until something stirs them up.

    Best wishes,
    Sushi
     
    SOC likes this.
  9. SOC

    SOC Moderator and Senior Member

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    I had some similar symptoms to yours, although nowhere near as severe. I, too, had HHV6 and likely HHV6 encephalitis. Valcyte helped a lot, but it was NOT quick. I had a period where I was worse (about 4-5 months into Valcyte treatment) before I started getting better. Once the bad stage was past, I started to feel a lot better -- especially cognitively. Even so, it was not a rapid improvement. I was on Valcyte for 2 years, my daughter for 20 months, and my uncle for even longer than I was.

    Based on my experience, I'm guessing that clearing the HHV6 is necessary to improve the types of cognitive problems you describe, but it is not sufficient to recover completely. I suspect that in addition to stopping the viral replication, there needs to be some healing of the damage done by the virus. That also will take time.

    My advice is to avoid worrying, if at all possible. This is going to take time -- 5 months is relatively short. Most people with ME/CFS need to take Valcyte for 18 months or more. Try to be patient, as hard as that is with our nasty, scary symptoms. Dr Enlander is a good doc who knows his business. My guess is that he told you this could take a while. Worrying or panicking the whole time is not going to speed up the process, although it's hard to avoid when the symptoms are frightening.

    Concentrate on doing everything you can to heal -- taking your meds correctly, eating properly, getting LOTS of rest, and following whatever other treatments Dr Enlander and you agree upon. Worrying, overdoing, or any other system stresses are only going to slow down an already slow process.

    Best wishes for eventual improvement. Keep us posted on how you're doing.
     
    Valentijn and Sushi like this.
  10. Aerose91

    Aerose91 Senior Member

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    Sushi-
    I haven't had the more specific tests done for those things outside of the blood and spinal fluid tests in the hospital. Where could I go to get that tested do you think?

    SOC. Thank you for that. I'm still on just 1 pill of valcyte per day and even that is actually giving me some problems- I constantly feel sickly and nauseous from it so I can't go up to 2 pills yet. But yes- once the cause is figured out it wil be a long time them for the brain damage to heal- and it's extensive. I try not to freak out about it (honestly I couldn't feel scared even if I tried) but it's very difficult to be so bad that I'm constantly reminding myself that I'm sick and this isn't normal even tho my brain is playing tricks on me. I can't even feel the severity of my own situation.
    But I do DR Enlanders protocol as well as keep a very clean diet and don't expend any energy because I'm too nervous to. I pretty much lie down most of the day and watch movies/read.

    It may also be worth noting that when this started I had a low grade fever for about 2 weeks and blood tests showed I have SIADH. also, the one symptom I almost never have is fatigue. Energy is ok but my brain function and exercise intolerance are absolutely horrendous
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Aerose91

    If you use tagging as I did above, a member will get a notification that you have replied to them.

    Do you have a doctor locally who is willing to work with you on testing? i.e. open to your input?

    Bartonella and Borrelia are hard to test for as they are intracellular and it is hard to "catch" them in the blood. There are also many strains of both of them and the test kit used needs to be sensitive to the strain you might have. All to say, testing is not easy.

    In my opinion, the best place to test for Bartonella in the States is: http://www.galaxydx.com/web/human-health/test-descriptions/

    If it is found by PCR (which looks for the DNA), you have it. But, it can also be easily missed so they do other types of testing too.

    As far as Borrelia, the IgneneX test http://www.igenex.com/Website/ (in my opinion!) is a good place to start (their test that includes co-infections) and Medicare pays for it so I'd guess many insurance companies also do. It tests for common strains found in the US, it is not perfect, but one of the better tests.

    "Depersonalization" was the main symptom my friend had when she started her diagnostic journey.

    Best wishes,
    Sushi
     
    SOC likes this.
  12. SOC

    SOC Moderator and Senior Member

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    Yeah, that's tough when you can't tolerate a high enough dose of the med to do the job. :( You're making sure to take it on a full stomach, right? That can make a difference, if you haven't tried it.
     
  13. Aerose91

    Aerose91 Senior Member

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    Thank you guys,

    SOC, yes I take the valcyte on a full stomach. Hopefully I can get used to it soon so i can up the dose and hopefully see some improvement.

    Sushi-
    Thank to. For those links, I'm going to look into those tests. Unfortunately tho I hav a very tough time with doctors- I've seen all sorts including neurologists and infectious disease specialists and all of them want to send me to a psychiatrist. Probably because none of them know what ME is and think I'm just a quack who made up my symptoms from reading stuff online.
    Your friend with depersonalization- did she recover??
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Aerose91 (that is tagging--it sends you a notification that I have replied to you)

    Can we talk about my friend's experience with depersonalization on chat (which is private)? Just sign into it in the lower right hand corner of your screen and click on chat next to my name.

    Best,
    Sushi
     

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