Severe brain symptoms and still declining

Hip

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@Aerose91 DId you ever try anti-inflammatories that target brain inflammation, in particular, one that reduce microglial activation? Turmeric 1000 mg and N-acetyl-glucosamine 1000 mg are good at this. After I had what appeared to be viral meningitis, I had extraordinarily high anxiety symptoms for many years, but I fixed this by using anti-inflammatories that target brain inflammation.
 

Aerose91

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@Aerose91 DId you ever try anti-inflammatories that target brain inflammation, in particular, one that reduce microglial activation? Turmeric 1000 mg and N-acetyl-glucosamine 1000 mg are good at this. After I had what appeared to be viral meningitis, I had extraordinarily high anxiety symptoms for many years, but I fixed this by using anti-inflammatories that target brain inflammation.
Yah, I've tried both of those with no effect. Also I couldn't take them for long because I can't afford to. As of recently?I've had to stop all my treatments because I'm simply out of money. When I had my SPECT though the doctor who read it said it looked to him more like mitochondrial disease than brain inflammation which is consistent with my brain function declining parallel to my amount of energy expenditure.

Thanks for all the help, though.
 

Martial

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Yah, I've tried both of those with no effect. Also I couldn't take them for long because I can't afford to. As of recently?I've had to stop all my treatments because I'm simply out of money. When I had my SPECT though the doctor who read it said it looked to him more like mitochondrial disease than brain inflammation which is consistent with my brain function declining parallel to my amount of energy expenditure.

Thanks for all the help, though.
Mitochondrial disease is something genetic and usually presents at birth, I would not expect anything like that to make you sick with a recent sudden onset, that would be more like a life long thing with varying degrees of symptoms. I would just take it easy and do what you can for now, but treat the things you can. A brain SPECT is still something they don't know too much about so impossible to make a diagnosis off one thing. I remember you mentioning Lyme which causes major brain issues. Perhaps just treat with that using a cheap protocol like Buhners, do other lifestyle changes and the like and see how you improve. How have you been doing as of late anyways?
 

Aerose91

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Mitochondrial disease is something genetic and usually presents at birth, I would not expect anything like that to make you sick with a recent sudden onset, that would be more like a life long thing with varying degrees of symptoms. I would just take it easy and do what you can for now, but treat the things you can. A brain SPECT is still something they don't know too much about so impossible to make a diagnosis off one thing. I remember you mentioning Lyme which causes major brain issues. Perhaps just treat with that using a cheap protocol like Buhners, do other lifestyle changes and the like and see how you improve. How have you been doing as of late anyways?
I'm still declining overall. Isn't ME considered just acquired mitochondrial disease?
 

Martial

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I'm still declining overall. Isn't ME considered just acquired mitochondrial disease?
There is a connection to mitochondrial dysfunction but its not the same as a mitochondrial disease. Its more like the cells are not working properly due to something interfering, where as in mitochondrial disease there is a genetic cause of deficiency in the function of mitochondria and how it functions to produce ATP, enzymes, and other functions of the body.
 
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I've been taking piracetam. Is there a way to get insurance to pay for HBOT?

@Aerose91
Have you looked into hyperbaric oxygen therapy (HBOT) as a means to repair the damage caused by encephalitis?

Here are some links on HBOT for encephalitis:

Rapid Recovery Hyperbarics : Introduction

Chickenpox Encephalitis, HBOT treatment. Part 1 of 2 - YouTube

Our Staff | Oxford Hyperbaric Oxygen Therapy Center


The trick is to find cheap HBOT. You need around 20 to 40 sessions, and some organizations charge very high prices, like $200 per session. In the UK, you find certain multiple sclerosis charities that provide HBOT, and have a much reduced rate of around £25 per session. Though I am not sure if non-MS patients are eligible.
 

Tunguska

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I'll do my best to explain it- From the immediate onset of this I became very, very dissociated. Classic depersonalization. Since I had encephalitis my doctor said this wasn't uncommon and it should subside with time. However, it has never gotten better and only increased as time has gone on as well as any time I have over exerted. In fact, the first few times i had post exertional setbacks they only impacted my brain, making this situation worse and not my physical condition at all.

It goes much beyond this, though. It feels as if my connection to the world is fading into a darkness, where everything is becoming dimmer and dimmer. Visually it looks as if I have just come inside after being in very bright sunlight- before your eyes adjust and everything is so dark and dim. At its absolute best everything has a bit of a faint yellow hugh, as if in a dark room that is just lit with one flickering candle.
I'm pretty sure I've experienced that, though never for a long period and my daily symptoms now are different (but include brain fog). I've been through a lot of different neurotransmitter patterns at this point. I've also had mild head trauma.

I don't think it's what I described as "banana depression" (there's a thread), but closer to "cocoa depression". If I consume too much cocoa powder I get stomach disturbances combined with a very strong mental and visual darkening that I assume is either an allergen in the powder or theobromine overdose (less likely caffeine).

I've experienced derealization independently of cocoa but I remember likening them, an approximation. It's not something I would want to have all the time although what I have now is also wrecking me.
 
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I think that neuro inflammation could be from many causes including in my case head trauma, diabetes, hypoxic damage from asthma/sleep apnea/lung disease,

how do you know you have Lyme's disease or neuro inflammation with a lumbar puncture? I tried getting one at the ER twice but the docs wouldn't do it. Instead I went to the ER and they found a calcified granuloma on chest exray?
I have terrible brain fog that seems to be related to diabetes, high sugar/high gluten diet, sleep apnea, inflammation and the piracetam isn't helping.
 
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I doubt anyone with ME would get anywhere close to having dementia like states. I personally have seen two people with Dementia - old seniors - they did not know who they where, they were speaking about selling properties that they sold decades back, they did not recognize their family, they would roll of their beds and end up being stuck on the floor for days till someone would pick them up. Dementia is far more than just the brain fog and-or severe dissociation states.
 
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what the different with dementia and brain fog? I can no pronounce or remember, sever fog exhaust, lungs scarred0 am on ventilator and oxygen
 
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what the different with dementia and brain fog? I can no pronounce or remember, sever fog exhaust, lungs scarred0 am on ventilator and oxygen
hi,

I was just giving my two cents - Dementia is far more severe than fog or severe dissociation states, it goes beyond.

Hope you don't mind me asking - you're saying that you're on a ventilator? Is that because of ME?

Al
 

Aerose91

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I personally have seen two people with Dementia - old seniors - they did not know who they where, they were speaking about selling properties that they sold decades back, they did not recognize their family
I have all of these and many more, though it's transient and not all the time. Before my grandma passed away, her and I would get sundowners at the same time in the evening. The only difference is that mine would improve slightly in the morning and hers was constant and I was generally higher functioning than her. I constantly forget where I am, who my parents are and even ask if there's anything wrong with me. States of dementia and psychosis are absolutely possible with ME, just rather uncommon and a different pathology probably than dementia as we understand it.
 
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I have all of these and many more, though it's transient and not all the time. Before my grandma passed away, her and I would get sundowners at the same time in the evening. The only difference is that mine would improve slightly in the morning and hers was constant and I was generally higher functioning than her. I constantly forget where I am, who my parents are and even ask if there's anything wrong with me. States of dementia and psychosis are absolutely possible with ME, just rather uncommon and a different pathology probably than dementia as we understand it.
I certainly believe that psychosis is possible with ME, I believe it would be more possible with Lyme though and other co-infections, I admit that I have been close to psychosis 2 times on two different flares.
 
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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.
Having a positive Lyme test does not necessarily mean you are symptomatic or ill. (most lyme tests will come up negative)

The way I see things - Even people that have been diagnosed with Lyme have some sort of immune dysfunction that allows the bacteria to spread even after years of treatment. Someone I know from another forum is symptomatic and has had the curiosity to test 20 of her friends in a specialized Lab, they all came back positive despite not having any symptoms at all. A lot of lyme patients are diagnosed based on negative tests (in my case too).

It's very confusing even for doctors! CFS has NO known exact cause. The bottom line, since Lyme and CFS share almost identical symptoms, so many patients with CFS might have Lyme or another co-infection, by the way ticks carry viruses too. However, I agree CFS and Lyme is not the same illness.

Just wanted to point out (according to NHS) that psycological trauma and mental illness can trigger CFS and FMS.

Causes of chronic fatigue syndrome
Exactly what causes chronic fatigue syndrome (CFS) is unknown, but there are several theories.

Some experts think a viral infection such as glandular fever can trigger the condition. Tiredness is normal after a viral infection, but this does not explain why symptoms persist and get worse in CFS.

Also, many cases of CFS do not start after an infection and this theory does not explain why the condition sometimes develops gradually.

Other suggested causes of CFS include:

  • problems with the immune system
  • a hormone imbalance
  • psychiatric problems – some cases have been linked to mental exhaustion, stress, depression and emotional trauma
  • genes – some people may have an inherited tendency to develop CFS, as it is more common in some families
  • traumatic events - some cases have been linked to events such as surgery or a serious accident
It is possible that CFS is caused by a combination of factors. Further research is necessary to confirm the cause(s).
(source) - http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Causes.aspx
 

drob31

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I recently tested positive for antiphospholipid antibodies, which is an autoimmune disorder that generally attacks phospholipids which can be found on the surface of all cells, but generally attacks platelettes, and causes high levels of fibrin and abnormal results on ISAC, and INR labs.

I have the depersonalization, and the lack of a sense of identity, but I don't have as severe of the physical symptoms. But exertion does seem to be a big factor.

The reason I mention this is because antiphopholipid antibodies is something that may be seemingly common, as in 2-4% of people have it. Yet it's sort of a chameleon in that it's an autoimmune disease that can present in a 100 different ways, sort of like Lyme.

I know allot of people get basic autoimmune panels done. I was negative for ANA, anti-nuclear DNA, and compliment c3 was normal. However, when I had a comprehensive autoimmune panel done, these popped up.

If APA is indeed causing these symptoms it is doing so through hypoxia, hypercoagulation, and other very similar CFS like mechanisms.

Why do I mention this? Because it seems like such a close fit to some cases of CFS, and can manifest in so many ways.

@Martial
@Aerose91

Hypoperfusion of brain single photon emission computerized tomography in patients with antiphospholipid antibodies

http://www.jdsjournal.com/article/S0923-1811(96)00544-0/abstract
 
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Aerose91

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I recently tested positive for antiphospholipid antibodies, which is an autoimmune disorder that generally attacks phospholipids which can be found on the surface of all cells, but generally attacks platelettes, and causes high levels of fibrin and abnormal results on ISAC, and INR labs.

I have the depersonalization, and the lack of a sense of identity, but I don't have as severe of the physical symptoms. But exertion does seem to be a big factor.

The reason I mention this is because antiphopholipid antibodies is something that may be seemingly common, as in 2-4% of people have it. Yet it's sort of a chameleon in that it's an autoimmune disease that can present in a 100 different ways, sort of like Lyme.

I know allot of people get basic autoimmune panels done. I was negative for ANA, anti-nuclear DNA, and compliment c3 was normal. However, when I had a comprehensive autoimmune panel done, these popped up.

If APA is indeed causing these symptoms it is doing so through hypoxia, hypercoagulation, and other very similar CFS like mechanisms.

Why do I mention this? Because it seems like such a close fit to some cases of CFS, and can manifest in so many ways.

@Martial
@Aerose91

Hypoperfusion of brain single photon emission computerized tomography in patients with antiphospholipid antibodies

http://www.jdsjournal.com/article/S0923-1811(96)00544-0/abstract

This is really interesting to me because I've seen this pop up in passing before and I just saw a new neurologist who said he strongly thinks I have an autoimmune encephalopathy going on. He said Lyme could have been the trigger but he kept falling back on autoimmune.

With your knowledge of APA, would taking any phospholipids cause or further aggravate it? I take relatively high dose of phosphatidylcholine and don't seem to notice any ill effects
 
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You seem to have almost exactly the same brain symptoms and dark/dimmed/yellowish vision as I have. I am also seeing everything like it is it by candlelight and walking from bright sunlight into a dark room. These where my own exact words! For me this illness became very bad 7 years ago and has been progressively worse. I feel horribly ill all the time. You can find my thread on Longecity forum:

http://www.longecity.org/forum/topi...dated-brain-with-dimmed-vision-and-anhedonia/
 

drob31

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At this point in time I believe my APA is transient, and may be triggered by a virus or bacteria. I don't have the ongoing syndrome. My ISAC panel did not prove conclusive for this and subsequent APA test were negative.

I still think many people have it after learning about, however.
 
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It's that time of the year when I am flaring badly .. and just stumbled across this thread.

My brain, spine and body is on fire and in pain.

I might have systemic lupus since my last tests showed huge inflammation in my body with a positive ANA test. It's a hell what I am going through.