Severe brain symptoms and still declining

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i have this terrible brain fog/. Although its very addicting ativan helped immensely. Unfortunately I cant stay on it for a long time because I build a tolerance to it.
 
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coQ10 does nothing, the brain symptoms in most people here I believe are from the tensed muscles in their neck and jaw. Some might have TMJ as well like me. The only thing that helps me with these are walking in fresh air, swimming, riding my bike and benzodiazepines.
 
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@Aerose91, @Martial, etc. I just stumbled onto this. I have had three years of unexplained symptoms that over a dozen neuros are calling "unspecified neuroinflammation/autoimmune response" after finding oligoclonal bands in my spinal fluid. Those are bands that indicate the central nervous system is reacting against an antibody or chronic infection. They are often found in MS patients but I do not have MS. In fact ALL of my scans including SPECT of brain are clean - no hypoperfusion, etc.

My physical symptoms are PEM, terrible neuralgia headaches, autonomic dysfunction, insomnia, seizures and horrible facial pains and head pressures. I also have neuropathy. I feel like I have minions living in my head - there is always a nerve thats burning, pulling, squishing, shifting, tingling, etc. My eyes feel like they are on puppet strings. My head just does not feel right.

I am on IVIG to try and modulate whatever response this is, but its not really working. I was on a month of IV antibiotics (b/c I show Lyme exposure) and felt better but now on oral antibiotics not doing so good.

My absolute WORST symptoms are mental. My memory and intellect are still good so the doctors keep saying this is not a dementia (even though I personally feel more and more unmoored each day). It is this horrible doom cloud of depression and palpable anxiety all day long. No joy. And the littlest stressors make my head hurt like I am mental. I am trying to raise three kids and its all I can do to get through the day. I dread Halloween tomorrow. Too taxing. I cant believe this is my life. Clearly my spinal fluid shows a problem but b/c my MRIs and SPECTS are clean there is NOTHING that they can do short of a brain biopsy to see what brain inflammation is exactly going on. And interestingly enough, my neuro said that the cranial symptoms are a dorsal root ganglionopathy, which we have all seen here in connection with CFS/ME and some of the autopsy cases. Something got to me somewhere somehow. I trace this all back to my two year bout with Mono as a teen. It completely floored me and my system has never been the same - developed raynauds after, anticardiolipin antibodies, etc. I also have low serum complements which are usually lupus associated, but I don't have lupus. But again, yet another autoimmune peculiarity....

All of these doctors are top notch. One was at NYU, one from Sloan, one at UPenn, so these are no schlumps, but yet no one can figure out why my brain is inflamed. Interestingly enough I come up as "fluouresence noted" on all brain antibody tests (like the Brain on Fire my month of madness girl), yet when they western blot I am negative. So I have some unknown antibody that is making me crazy and no one can help me. So I take 1mg of Klonopin a day just so I dont go off the deep end. All of the other psych meds I have a paradoxical reaction to.

I can't believe in this day and age that there is no relief for me. It boggles the mind I am in so much physical and mental torture on a daily basis and no relief. It drives one to despair and I am feel like I am dying and have no future. The uncertainty of having an autoimmune reaction in my CNS scares me. Is this CFS/ME or something else? WIll I decline? Can I live like this for five years? Ten? All the doctors say this isn't deadly, oh, really? If you don't know what I have or what it is or how I feel, how can you opine? I never imagined I would get a disease that had no diagnosis and no name and no treatment. This makes it very challenging with my family who keeps saying, "but your not dying" as if that makes this craziness and uncertainty all okay? So Aerose91 when you talk about fear of decline, I totally understand...
 
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stridor

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@Pyr2
I don't have much for you. I have been reading lately on CBD oil and I thought that it was interesting that it is of some help with Parkinson's which in some cases may also have an autoimmune connection.
No doubt a bandaid solution but if I was in a similar boat, I might give it a try. It is basically a no-harm approach with an extremely low side effect profile. Worth googling at any rate.
 

stridor

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@Pyr2
It is basically hash oil without the THC. We have all of these cannabinoid receptors including in our immune systems and brains. I am still early into my reading but there may be something here in terms of a treatment for me. The gut and immune system are my last hurdles and I am still in the reading stage on this.

The other thing that I am considering is low-dose neltrexone which is also an immune system modulator. And I know that you have heard of that one.

Your case is certainly complex. All I can do is tell you about me. It is my only area of expertise, I am telling you this not because I am trying to divert attention to my health but just in case something resonates with you.

My immune system is pissy too, but in far less dramatic ways. I have things like eczema, folliculitis and psoriasis. I need to take in crazy amounts of coconut each day to keep outbreaks of hives more-or-less controlled. (Some sort of Mast Cell problem).

I used to have Bipolar and CFS but would not meet the criteria for either at this time. I blame mercury for tipping the apple cart. But now that it is gone the immune system is still over-activated.

My story includes mercury toxicity, low thyroid and low adrenal (take meds for both still), low B12 and other methylation pathway problems, mycoplasma and HHV-6 infections, and I had my colon removed and no longer have an ileocecal valve and therefore I live with SIBO and leaky gut.

It seems very few people who are really sick are spared some level of involvement in terms of the gut.

I have done everything that I can and am now at the stage where I think that the best way forward is to calm the immune system. The mercury is gone. The infections are gone. There is nothing more that I can think of to do for my gut. The immune system just needs to ease off the trigger at bit.

If you haven't been tested for metal yet, consider it. A hair test is preferred as even mercury hiding in the brain will leave its signature in the numbers and it may not with other forms of testing. (Half-life of mercury in the brain is 15-20 years.)

Absolutely none of this may be of any use to you. Clearly with MRIs and SPECT scans you are seeing some of the best. I consider my issues to have been trifling in comparison. Still, it was reading stuff like this that allowed me to piece together what was happening in my case. You just never know what is going to help the next person.
 
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Chsk
Firstly, I apologize if this is slightly long but I may need to write a bit to get my point across.

From the immediate onset of this disease for me mental symptoms were 500x worse than physical ones, and even though I have declined physically I have declined much more mentally.

Comparing "brain fog" to what I am dealing with is like comparing t-ball to major league baseball. Sure, I have brain fog but it's just the tip of the spear.

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.

It feels as if my brain is plunging deeper and deeper into nothingness to the point where this week it's like I'm living in near total darkness. Its not a visual thing, though, I still have bright light sensitivity but its the way my brain perceives the world around me. It's as if I'm hundreds of feet under water, struggling to swim back to the top toward the light but I keep getting dragged further down. My thoughts are extremely faint and few, sensations are almost non-existent, and my general cognition is on an all time low. It's like my mind is on the verge of dissappearing. Things I did mere hours ago feel like a distant childhood memory and ask me to remember anything I did beyond this morning? Not a chance. The entire last year that I've had my illness is just black and there is zero connection to my life prior. Is this experience common to those who have brain fog? I mean, i hear people say things like they can't recognize familiar places or people. My cognition is generally still good in that regard, its just that my experience of the outside world and my own thoughts is extremely faint. My logic is still in tact but sometimes I start to dip into psychosis and then it becomes impossible to convince my brain of what is really going on. Even posting this feels like i'm a place far, far away and at any moment the tunnel may close.

Aside from the difficulty of living like this and all of the physical symptoms the most disturbing part is that this never fluctuates at all- never changes or gives me any indication of lessening even 1% My physical symptoms will fluctuate and change day to day but the condition of my brain does not. Regardless of sleep, headaches, nutrition or general mood it is the same 24/7/365.

I have expressed this concern to my doctor (who is a world renound ME doctor) several times and he just nods his head and says "yes, brain fog, very common in this disease" I try to tell him this MUCH more than brain fog but I don't get anywhere. I have even seen two other doctors because of this and no one seems to have a clue. I have had all the tests done- MRIs, thyroid, adrenals, hormones, O2 levels, SPECT. Out of all of them nothing showed anything except my SPECT showing hypoperfusion over the entire length of both sides of my cerebral cortex but my doctors still say they don't understand what accounts for this. One doctor tried putting me on Prozac to blame it on depression and yeah, I felt a little less depressed but it did nothing to address this. I don't even feel that I could be depressed because I'm much too far from reality and the real world to be able to feel depression.

I am still pursuing an accurate Lyme test and possibly sleep apnea even though I don't have any of the classic symptoms.

If you're still reading at this point I thank you. I just don't know what to do anymore as it seems nothing has any positive effect. I'm honestly not interested in trying a plethora of supplements or medications because I am so sensitive to everything. I would much rather figure out the root cause of this.

For the past year I have pretty much learned to grin and bear it and adjust to this. However, recently I've been plunging further into this darkness and it's becoming quite concerning again. Does this sound like something common of an M.E. sufferer?
Check for anti NMDA receptor antibodies and a full panel of autoimmune anti neuronal antibodies
 

crypt0cu1t

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Firstly, I apologize if this is slightly long but I may need to write a bit to get my point across.

From the immediate onset of this disease for me mental symptoms were 500x worse than physical ones, and even though I have declined physically I have declined much more mentally.

Comparing "brain fog" to what I am dealing with is like comparing t-ball to major league baseball. Sure, I have brain fog but it's just the tip of the spear.

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.

It feels as if my brain is plunging deeper and deeper into nothingness to the point where this week it's like I'm living in near total darkness. Its not a visual thing, though, I still have bright light sensitivity but its the way my brain perceives the world around me. It's as if I'm hundreds of feet under water, struggling to swim back to the top toward the light but I keep getting dragged further down. My thoughts are extremely faint and few, sensations are almost non-existent, and my general cognition is on an all time low. It's like my mind is on the verge of dissappearing. Things I did mere hours ago feel like a distant childhood memory and ask me to remember anything I did beyond this morning? Not a chance. The entire last year that I've had my illness is just black and there is zero connection to my life prior. Is this experience common to those who have brain fog? I mean, i hear people say things like they can't recognize familiar places or people. My cognition is generally still good in that regard, its just that my experience of the outside world and my own thoughts is extremely faint. My logic is still in tact but sometimes I start to dip into psychosis and then it becomes impossible to convince my brain of what is really going on. Even posting this feels like i'm a place far, far away and at any moment the tunnel may close.

Aside from the difficulty of living like this and all of the physical symptoms the most disturbing part is that this never fluctuates at all- never changes or gives me any indication of lessening even 1% My physical symptoms will fluctuate and change day to day but the condition of my brain does not. Regardless of sleep, headaches, nutrition or general mood it is the same 24/7/365.

I have expressed this concern to my doctor (who is a world renound ME doctor) several times and he just nods his head and says "yes, brain fog, very common in this disease" I try to tell him this MUCH more than brain fog but I don't get anywhere. I have even seen two other doctors because of this and no one seems to have a clue. I have had all the tests done- MRIs, thyroid, adrenals, hormones, O2 levels, SPECT. Out of all of them nothing showed anything except my SPECT showing hypoperfusion over the entire length of both sides of my cerebral cortex but my doctors still say they don't understand what accounts for this. One doctor tried putting me on Prozac to blame it on depression and yeah, I felt a little less depressed but it did nothing to address this. I don't even feel that I could be depressed because I'm much too far from reality and the real world to be able to feel depression.

I am still pursuing an accurate Lyme test and possibly sleep apnea even though I don't have any of the classic symptoms.

If you're still reading at this point I thank you. I just don't know what to do anymore as it seems nothing has any positive effect. I'm honestly not interested in trying a plethora of supplements or medications because I am so sensitive to everything. I would much rather figure out the root cause of this.

For the past year I have pretty much learned to grin and bear it and adjust to this. However, recently I've been plunging further into this darkness and it's becoming quite concerning again. Does this sound like something common of an M.E. sufferer?
Holy shit I have the exact same issues especially the vision!!!! I never heard anyone describe this so perfectly as to how I feel.

Have you found any causes or treatments that help?
 

stridor

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I read once that brain fog that was present for more than 2 years was at risk of becoming permanent. I remember hitting the 2 year mark and how I felt, then 3, then 5 and then 7 years. But brain fog is finally gone but there was no one thing that I did.

In 2011, the fog was so thick that I could not follow conversation. Getting some hydrocortisone on board helped me be able to think well enough to find a Dr who was open to what I was saying. Chelation of Hg helped I assume but the process is gradual and the impact is difficult tease apart from the other stuff.

Nicotine was helpful in the first year (I am not a smoker). Made enough difference to be sitting at my computer instead of lying on the couch.

Freddd's Protocol made a big difference. The single biggest factor. I went from being sent home "incapable" to being asked to be Team Lead in a period of 3 months. A year later I was still regaining my memory.

Dealing with mycoplasma and HHV-6 infections helped. I assume that there was a low-grade encephalitis going on.

Finally, pushing the hydrocortisone into Addison's Disease doses dealt with the remainder.

I problem with those of us that have been fogged for years is that we lose concept of what clear thinking is any more. I am telling you that I do not have fog but have to accept that that may only be a perception.

I have constant SIBO as I do not have a colon or ileocecal valve. The increase in hydrocortisone has increased my energy reserves, but perhaps the greatest impact has been at the gut where the lion's share of the immune system is.

I can not change the SIBO, all I can do is try to get the immune system to calm down about what is going on in my lower ileum. I had always assumed that this was the origin of any residual fog.

Not sure if any of this is helpful to others. Fog can be very discouraging but it is not permanent, don't give up.
 

Wayne

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Pretty remarkable thread here, with some extraordinary accounts of major brain dysfunctions, including depersonalization, I have my own share of major brain difficulties, but have recently discovered CBD oil helps me function a wee bit better. -- I would encourage others with brain difficulties to consider it.

From all my research, I feel mHBOT will likely be what will turn out to be the best therapy for me. It's use by some people with Lyme have led to remarkable recoveries, and I think a lot of brain dysfunctions correlate fairly closely with what happens to a Lyme brain. -- Now, the cost of a home unit mHBOT... :rolleyes: Currently out of my reach. :(
 

Wayne

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It feels as if my brain is plunging deeper and deeper into nothingness to the point where this week it's like I'm living in near total darkness. Its not a visual thing, though, I still have bright light sensitivity but its the way my brain perceives the world around me. It's as if I'm hundreds of feet under water, struggling to swim back to the top toward the light but I keep getting dragged further down.

For the past year I have pretty much learned to grin and bear it and adjust to this. However, recently I've been plunging further into this darkness and it's becoming quite concerning again. Does this sound like something common of an M.E. sufferer?
@Aerose91,

Thanks for this (entire) post. It describes a lot of what I deal with. I suspect your experiences are more common for ME sufferers than you might think. Most just don't write about it as articulately as you. -- I copied your entire post and sent it to my wife. She understands a lot of what I'm going through quite well, but somethings it's posts like what you wrote that conveys things in a more meaningful way. -- Thanks for sharing!
 
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I had a good experience with hydrocortisone the first time. My asthma breathing problems were better and my whole body relaxed and I felt warmth in my feet. Maybe I had a vascular issue I'm not sure. it was really great being able to breathe and relax
Now I have to deal with worsening asthma and rib pain without solumedrol
I've heard there are problems with becoming dependent on it and HC prednisone causing adrenal atrophy without tapering?
 

Aerose91

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@Aerose91,

Thanks for this (entire) post. It describes a lot of what I deal with. I suspect your experiences are more common for ME sufferers than you might think. Most just don't write about it as articulately as you. -- I copied your entire post and sent it to my wife. She understands a lot of what I'm going through quite well, but somethings it's posts like what you wrote that conveys things in a more meaningful way. -- Thanks for sharing!
Thank you for the kind words, Wayne. Im so sorry you are experiencing anything even resembling what i am- it's truely torture.

I'm glad to have been able to help in articulation, especially for a spouse or loved one- IMO those are the people we need to reach the most. I often feel as though I've lost my ability to write with any degree of complexity and intellect so it's pleasent to hear it may not all be gone
 
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Aerose91

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Pretty remarkable thread here, with some extraordinary accounts of major brain dysfunctions, including depersonalization, I have my own share of major brain difficulties, but have recently discovered CBD oil helps me function a wee bit better. -- I would encourage others with brain difficulties to consider it.

From all my research, I feel mHBOT will likely be what will turn out to be the best therapy for me. It's use by some people with Lyme have led to remarkable recoveries, and I think a lot of brain dysfunctions correlate fairly closely with what happens to a Lyme brain. -- Now, the cost of a home unit mHBOT... :rolleyes: Currently out of my reach. :(
Do you have a lyme or other tick bourne disease diagnosis, Wayne? It seems to me that most with severe brain and psychological dysfunction end up testing positive for some type of tick bourne infection. For me it's bartonella
 
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crypt0cu1t

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I had a good experience with hydrocortisone the first time. My asthma breathing problems were better and my whole body relaxed and I felt warmth in my feet. Maybe I had a vascular issue I'm not sure. it was really great being able to breathe and relax
Now I have to deal with worsening asthma and rib pain without solumedrol
I've heard there are problems with becoming dependent on it and HC prednisone causing adrenal atrophy without tapering?
Have you tested positive for any autoantibodies?
 

Stretched

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The references to brain dysfunctions throughout this old thread didn’t really address the issue as to whether or nor PEM followed their symptom flairs, i.e. this
truly being a marker of MECFS?

I for one would be interested in learning of the brain dysfunction-PEM dynamics. IOW, what illnesses) are we talking about in the several cases referenced in the
multiple posts?