has anyone completely lost their ability to feel

Aerose91

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Dr John Chia very kindly read my website, and said that the viral symptoms I listed on it are very typical of enteroviruses. At the time of first writing my site I did not know that much about viruses, and so I listed all the ME/CFS-associated viruses as possible candidates for the virus I caught (enterovirus, EBV, HHV-6, CMV, parvovirus B19). However, Chia said only enterovirus is capable of causing the very specific symptoms I listed on my site.
Man, that's a tough one. I looked at your site and I have many of your symptoms but some specifically never have had. For instance I have never had a soar throat, suicidal thoughts, chronic fatigue, or loss of hearing. I have almost no fatigue and just massive dissociation. I have been tested for coxackie but that's just through quest and I don't know if that's reliable.
 

Tunguska

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@Tunguska, it may be that you have lack of motivation, rather than anhedonia.

It can be difficult to distinguish the two, but basically lack of motivation means you do not tend to spontaneously initiate into tasks and purposeful activity; whereas anhedonia means that you don’t get the feeling of reward or satisfaction on completion of a task or activity.

So for example, you could still have good motivation with anhedonia; but you just won't feel that nice sense of satisfaction when you've completed the job.

Lack of motivation is due to problems in the motivational circuitry of the brain; whereas anhedonia is due to problems in the reward system of the brain.



I had quite severe lack of motivation (as well as anhedonia) for several years. I was like you, in that I would just sit there and have plenty of things to do, but my brain would remain neutral, doing nothing, rather that engaging in any task. This was not due to brain fog or fatigue; I had enough energy and cognitive power to undertake tasks, but I just found that my brain seemed to refuse to initiate itself into the task.

If you have never experienced severe lack of motivation, it probably sounds really bizarre that your brain could just become largely incapable of starting and engaging in purposeful actively; but this is precisely what happens when you get a dysfunction of your brain's motivational circuitry.

But fortunately I did find some good treatments for my lack of motivation:

Low dose pramipexole, say ½ of a 0.18 mg tablet daily, seemed to work wonders for my low motivation symptoms.

Vitamin B2 (riboflavin) 50 mg, taken two or three times daily, also seemed to significantly boost my motivation.

Within an hour of taking them, vitamin B2 or pramipexole will quickly change me from being apathetic to being focused and task oriented. So vitamin B2 and pramipexole are very useful tools for breaking through any motivational stagnation.
I know what you mean but was going under the label anticipatory anhedonia. Thanks for the advice but I did the B2 and others, pramipexole I considered too, but now it's secondary to the other problem. On 2 or 3 days I triggered motivation with huge phosphatidylserine dose (which used to destroy me, so things have changed) but the other problem was and is driving me insane anyway.
 

Hip

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The way I describe it is just that my brain is "so far gone" With the massive dissociation, loss of feeling, psychosis, dementia, loss of feeling of time and placement theres just no other way to describe it.

However, I can completely hide it if I want. I can go out in public and be smiley and have conversations and no one would be able to tell anything is wrong at all- which I like. However inside it's just an act.
I had a similar set of mental symptoms to yours, @Aerose91, including mild psychosis. But like you, no one was able to tell anything was wrong with me, unless I told them.

In general, if you are still aware of the mental health symptoms you are experiencing (and can therefore to some degree compensate them or hide them), this is viewed in psychiatry as a much better state of affairs compared to patients who have no awareness or insight into their own mental symptoms. Once you get to a state where you are no longer aware of you own mental conditions, this is seen as worse.

The interesting thing about psychosis, is that when it gets to more severe levels, it obliterates the human mental faculty of self awareness and insight into your own mind. Psychosis seems to specifically reduce and finally eliminate self awareness.

So in more severe psychosis, patients are no longer aware of that they have psychosis, and thus can no longer try to compensate for it or hide it. This is when such people will start to come over as crazy to others, because once you lose all self awareness, you also lose self control, and are not able to keep it all together anymore.

I would say the psychosis I experienced was only mild, but on bad days, I really started to worry that it might get to the state where I began to lose self awareness and insight into my mind, and thus lose control and command over my own self. Fortunately this never happened.


The very low dose amisulpride, which I originally took to treat my anhedonia, also helped with the psychosis, no doubt because at normal doses amisulpride is an anti-psychotic drug. So this drug is worth trying if you are struggling with mild levels of psychosis. And the supplement N-acetyl-glucosamine worked very well for treating my psychosis, I found.

Here is a list of drugs and supplements that seemed to reduce my psychosis levels a bit:

Drugs and supplements seemed to reduce psychosis:

N-acetyl-glucosamine 1000 mg twice daily — the best.
Amisulpride in very low doses 12.5 to 50 mg daily — also excellent. At much higher doses this drug is an antipsychotic, so it is not surprising it helps to reduce psychosis even at very low doses.
Flaxseed oil one level tablespoon (15 ml) daily (more may cause diarrhea).
Vitamin C powder 3 grams in a glass of water, taken three times daily.
Phosphatidylserine 400 mg once or twice daily (works best with omega 3 oil) — much cheaper if you buy in bulk powder.
Niacinamide (a form of vitamin B3) 1000 mg twice daily (though I found higher levels of niacinamide may cause some slight emotional blunting).


Note that I had mild psychosis in the context of generalized anxiety disorder. Extreme anxiety can precipitate psychosis, and this is called anxiety psychosis.
 
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Hip

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I know what you mean but was going under the label anticipatory anhedonia.
Yes, I was going to mention anticipatory anhedonia as something that has very similar effects to lack of motivation. As you undoubtedly know, anticipatory anhedonia relates to when you anticipate the pleasure you are going to get from undertaking an activity, where you look forwards to some nice events that are coming up in your life. With anticipatory anhedonia, you no longer get pleasure from such anticipated activities.
 
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Hip

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I looked at your site and I have many of your symptoms but some specifically never have had. For instance I have never had a soar throat, suicidal thoughts, chronic fatigue, or loss of hearing. I have almost no fatigue and just massive dissociation. I have been tested for coxackie but that's just through quest and I don't know if that's reliable.
Enteroviruses cause more than 85% of all cases of viral meningitis, and are a common cause of viral encephalitis too.

My own virus caused me to suffer viral meningitis, but this occurred a few years after I first caught it. My viral meningitis instantly produced significant personality change and loss of certain mental faculties, which I have never recovered from.


Chia said that the only reliable way of testing a chronic enterovirus infection is via the ARUP Lab tests, or by stomach biopsy immunohistochemistry.

But even if you were positive for an active chronic enterovirus infection, that in itself would not prove that it was enterovirus that originally caused your encephalitis.

However, in any case, you can speculatively try the anti-enterovirus treatment that Chia uses on his ME/CFS patients, which is oxymatrine.
 

Aerose91

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I had a similar set of mental symptoms to yours, @Aerose91, including mild psychosis. But like you, no one was able to tell anything was wrong with me, unless I told them.

In general, if you are still aware of the mental health symptoms you are experiencing (and can therefore to some degree compensate them or hide them), this is viewed in psychiatry as a much better state of affairs compared to patients who have no awareness or insight into their own mental symptoms. Once you get to a state where you are no longer aware of you own mental conditions, this is seen as worse.

The interesting thing about psychosis, is that when it gets to more severe levels, it obliterates the human mental faculty of self awareness and insight into your own mind. Psychosis seems to specifically reduce and finally eliminate self awareness.

So in more severe psychosis, patients are no longer aware of that they have psychosis, and thus can no longer try to compensate for it or hide it. This is when such people will start to come over as crazy to others, because once you lose all self awareness, you also lose self control, and are not able to keep it all together anymore.

I would say the psychosis I experienced was only mild, but on bad days, I really started to worry that it might get to the state where I began to lose self awareness and insight into my mind, and thus lose control and command over my own self. Fortunately this never happened.


The very low dose amisulpride, which I originally took to treat my anhedonia, also helped with the psychosis, no doubt because at normal doses amisulpride is an anti-psychotic drug. So this drug is worth trying if you are struggling with mild levels of psychosis. And the supplement N-acetyl-glucosamine worked very well for treating my psychosis, I found.

Here is a list of drugs and supplements that seemed to reduce my psychosis levels a bit:

Drugs and supplements seemed to reduce psychosis:

N-acetyl-glucosamine 1000 mg twice daily — the best.
Amisulpride in very low doses 12.5 to 50 mg daily — also excellent. At much higher doses this drug is an antipsychotic, so it is not surprising it helps to reduce psychosis even at very low doses.
Flaxseed oil one level tablespoon (15 ml) daily (more may cause diarrhea).
Vitamin C powder 3 grams in a glass of water, taken three times daily.
Phosphatidylserine 400 mg once or twice daily (works best with omega 3 oil) — much cheaper if you buy in bulk powder.
Niacinamide (a form of vitamin B3) 1000 mg twice daily (though I found higher levels of niacinamide may cause some slight emotional blunting).


Note that I had mild psychosis in the context of generalized anxiety disorder. Extreme anxiety can precipitate psychosis, and this is called anxiety psychosis.
I don't live in a state of psychosis (luckilly) but dip down into it sometimes, particularly if I have overexerted. I know a marquee symptom of psychosis is that you don't know you are in it. When I have these episodes this is the case. However they don't last more than a couple minutes to a couple hours or so. At this point I have learned to deal with them the best I can, it especially helps knowing that I will come out of it. Unfortunately the best I ever get is just hovering above a level of psychosis.

I really wish I had found out what the active infection was/is in my brain, I feel like it could greatly help my chances. However I know at this point a brain biopsy is probably the only reliable test I could do and I haven't had that offered to me. I've heard of Dr Chia's treatments before and should look into them again, I just have very, very little money and could even afford to stay on Dr Enlander's protocol (even though it was doing nothing)
 

Hip

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I really wish I had found out what the active infection was/is in my brain, I feel like it could greatly help my chances. However I know at this point a brain biopsy is probably the only reliable test I could do and I haven't had that offered to me. I've heard of Dr Chia's treatments before and should look into them again, I just have very, very little money and could even afford to stay on Dr Enlander's protocol (even though it was doing nothing)
Oxymatrine is pretty cheap, especially if you buy the White Tiger oxymatrine. It's just a herbal extract that modulates the immune system so that it better fights viruses.

What you might want to do is research encephalitis, and make a list of viruses that are most likely to cause encephalitis, with the most common viral causes of encephalitis placed on the top of your list.

You might even want to look at the particular encephalitis you have (areas of the brain affected), and find out which viruses are most likely to cause that type of encephalitis.

In that way, you can make a good guess at the which virus might have caused your encephalitis, and then perhaps take some antivirals against this virus see if they make any difference.

This article is a good starting point:
Herpes simplex (the virus causing cold sores) remains the most common virus involved in encephalitis in the United States and throughout the world. These viruses are usually transmitted from person to person.

In the United States, there are five main encephalitis-causing viruses spread by mosquitoes: West Nile, Eastern equine encephalitis (EEE), Western equine encephalitis (WEE), La Crosse, and St. Louis encephalitis. Two types of Powassan viruses, an infrequent cause of encephalitis, are transmitted by at least two types of ticks.
For herpes simplex treatment, Dr Pridgen's anti-herpes simplex protocol might be worth looking at. You would probably want to make sure though that any antivirals you use can cross the blood-brain barrier.
 
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Aerose91

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Oxymatrine is pretty cheap, especially if you buy the White Tiger oxymatrine. It's just a herbal extract that modulates the immune system so that it better fights viruses.

What you might want to do is research encephalitis, and make a list of viruses that are most likely to cause encephalitis, with the most common viral causes of encephalitis placed on the top of your list.

You might even want to look at the particular encephalitis you have (areas of the brain affected), and find out which viruses are most likely to cause that type of encephalitis.

In that way, you can make a good guess at the which virus might have caused your encephalitis, and then perhaps take some antivirals against this virus see if they make any difference.

This article is a good starting point:

I actually did that. I looked at all the viruses I have (EBV, HHV-6, M Pneumonia, Parvo B16) and looked up which ones could cause limbic encephalitis (the type of E that I had/have) The one that kept popping up was HHV-6 so once I was with Dr Enlander I pleaded with him to put me on Valcyte, which he did. Unfortunately after about 6 months and thousands of dollars later it didn't do a thing. That's a main reason I've run out of money.

I'm turning now toward Lyme and am going to do some experimenting with that to see if it has any effect. Lyme seems to be the only thing I've found which causes some of symptoms in my brain (dissociation etc) but I also have severe PENE so even if it is Lyme, I have ME on top of it.
 

Hip

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I actually did that. I looked at all the viruses I have (EBV, HHV-6, M Pneumonia, Parvo B16) and looked up which ones could cause limbic encephalitis (the type of E that I had/have) The one that kept popping up was HHV-6 so once I was with Dr Enlander I pleaded with him to put me on Valcyte, which he did. Unfortunately after about 6 months and thousands of dollars later it didn't do a thing. That's a main reason I've run out of money.
Well that 6 month course of Valcyte should have targeted any herpes family virus that might be involved with your limbic encephalitis.

A quick check on Google finds that enteroviruses can also cause limbic encephalitis, and indeed, I found two papers that examined cases of recurrent limbic encephalitis:

A case report of recurrent limbic encephalitis caused by an enterovirus infection

A Chronic Progressive Case of Enteroviral Limbic Encephalitis Associated with Autoantibody to Glutamate Receptor ε2

There also seems to be an autoimmune connection to limbic encephalitis; see this article:

Limbic Encephalitis - The Encephalitis Society

The article says that the treatment for autoimmune limbic encephalitis is immunosuppresive drugs such as "steroids, immunoglobulins (a blood product given into the vein in a drip) and plasma exchange (when some of a person’s blood is taken out from a vein, washed and then put back into the vein in a drip)."

This study says that the symptoms of autoimmune limbic encephalitis are seizures, short-term memory loss, and psychiatric and behavioural symptoms.
 

Aerose91

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I had seizures and nearly fell into a coma duri?g the acute stage which seemed to last two weeks, however since then those don't happen anymore. I've spent the past two years trying to get checked out for all those other, funky types of encephalitis: NMDA receptor, autoimmune, etc. but can't get anyone to investigate it. I guess based on all the tests I currently have nothing points to obvious acute encephalitis- they called it sub-acute and I dont show any autoimmune markers as of last year. Even on my SPECT the doctor said that it didn't look like acute inflammation but rather mitochondrial disease. Until I can find more evidence of something I'm just going forward assuming this is ME and my brain cells are the most directly effected, along with possible Lyme.

Thank you for all the help.
 

Hip

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@Aerose91
Note that corticosteroids are a treatment for autoimmune limbic encephalitis, and these are cheap drugs.
 
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Aerose91

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@Aerose91
Note that corticosteroids are a treatment for autoimmune limbic encephalitis, and these are cheap drugs.
Right, I forgot. I was put on a low dose of dexamethasone and it made me go f*!#ing crazy. They had to pull me off it after only 2 days. I definitely don't respond well to hormones- low dose thyroid was disastrous as well.

Funny because I'm a person who for 26 years never had even the slightest psychological problems. I was the most grounded, sane person you've ever met. I still feel like that person is in there as my mind is in tact, but my brain is damaged.
 
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Hi @Aerose How are you doing lately ?

I sympathize with you. At different times I have felt some of the symptoms you talk about.

After 5 years of illness I am starting to enjoy music more of late. For a couple of years there in the beginning it didn't elicit the emotional response it used to, which was very downheartening for me.

I'm starting to 'feel' the nice sensations that come with changes in the weather now. That hasn't happened for such a long time. It's not perfect but it has improved a little.

It seems like my brain is recovering from some hit that happened at the time of getting my viral onset.
It is hopeful to think that the brain can recover to some degree and give us back fresh, sharp feelings.
I certainly hope so.

My approach has been a bit experimental like @Hip . I love the way he is endlessly inquisitive and searching.

I have tried to induce mental states artificially with supplements, with the theory that if I can cut a new neural path and relearn deeper responses then maybe it will stick at some later date and keep developing. Almost like emotional exercise.
I guess a fresh little baby has to learn this way from the beginning. (Or maybe they come readily equipped ?)

I also try to listen to really emotive music or watch emotive movies to the same end.

Having a breakup recently hit home that I can feel emotional states quite well if they are extreme!
 

Aerose91

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Hi @Aerose How are you doing lately ?

I sympathize with you. At different times I have felt some of the symptoms you talk about.

After 5 years of illness I am starting to enjoy music more of late. For a couple of years there in the beginning it didn't elicit the emotional response it used to, which was very downheartening for me.

I'm starting to 'feel' the nice sensations that come with changes in the weather now. That hasn't happened for such a long time. It's not perfect but it has improved a little.

It seems like my brain is recovering from some hit that happened at the time of getting my viral onset.
It is hopeful to think that the brain can recover to some degree and give us back fresh, sharp feelings.
I certainly hope so.

My approach has been a bit experimental like @Hip . I love the way he is endlessly inquisitive and searching.

I have tried to induce mental states artificially with supplements, with the theory that if I can cut a new neural path and relearn deeper responses then maybe it will stick at some later date and keep developing. Almost like emotional exercise.
I guess a fresh little baby has to learn this way from the beginning. (Or maybe they come readily equipped ?)

I also try to listen to really emotive music or watch emotive movies to the same end.

Having a breakup recently hit home that I can feel emotional states quite well if they are extreme!
Thank you for the kind reply. You actually said something that is really noticeable to me- the changing of the seasons. It has no effect on me. I always blamed that on the dissociation but I have no idea, it would sure be nice to feel that though.
 
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Hi @Aerose91,

Just wondering how you are doing. This is my first post on this forum and I can identify with everything that you are going through. I have encephalopathy and was diagnosed with Lyme just over two years ago. I believe Lyme can cause this but after two years of intense treatment and little progress I am looking into other things. I found that I have very high D-lactate levels in my urine and that can cause encephalopathy/hypoperfusion in the brain. It might be something for you to consider. It seems like it is somewhat of a common finding on this forum.


Hope you get this, I know it has been quite a while since you posted on this thread. I don't know how to search very well yet so forgive me if you have updated elsewhere. I felt compelled to reply because I completely identify with the severe brain damaged feeling. Like nothing is up there, all emotion completely gone. It's like dementia for me and I'm only 28.

Noelle
 

Wayne

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I believe Lyme can cause this but after two years of intense treatment and little progress I am looking into other things.
Hi @Noellea77,

Thanks for sharing your experiences, and welcome to the PR forum. Just thought I'd briefly mention, I have a Lyme diagnosis, and have many different things with notable but limited results. I recently heard about pyroluria, and have been taking specific supplements to counter it. You may not have ever heard of it, but if you would want to check out some previous posts I've made, click on these SEARCH RESULTs.

All the Best, Wayne
 
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Hi @Wayne and thanks for the welcome. I have heard of pyroluria but haven't looked too far into it. I will check out the links that you provided. Are you seeing any results yet?

Noelle
 

Wayne

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Are you seeing any results yet?
Yes, most definitely. Two of the key nutrients that become depleted in pyroluria are B6 and Zinc, both of which are critical to brain function. I've noticed some notable improvements in cognition and organizing, and other mood and emotional factors. Regarding brain function, I definitely have more mental stamina than I had prior to starting the supplements.

Here's a LINK to help get you started with some online information. The following link is excellent:

Pyrrole Disorder for Therapists

P.S. Pyroluria and Pyrrola Disorder are the same thing.
 
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Thanks for the link. A lot of this sounds like me and my brother. I am on the Cutler Protocol so I'm already taking zinc but I will add in the B6 and see if that makes a difference. If it does, I will have to nag my brother to try it. He has terrible ADD and anger issues, has all his life. It was so hard to see him struggle in school. Any little thing turned into a temper tantrum. He has depression too. What is odd is that besides him and I, no one in my extended family on either side has any mental health or addiction issues. I am trying to get to the bottom of what the heck happened to him and I.

Noelle
 

Wayne

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I will add in the B6
Did want to briefly mention that whether you take B6, and/or other B vitamins, it "might" be important you take the co-enzymated kind. B vitamins can only be used if certain enzymes are available, and co-enzymated products make sure the necessary enzymes are available. One woman on this forum supplemented with B6 for years, but didn't notice much until she took the conezymated kind called P-5-P. This is the product that's working well for me: -- : Source Naturals Coenzymate B Complex Orange, 120 Tablets.