What would you do if a doctor told you this

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#1
I am asking this there because you are some of the smartest, resilient and rational people I've found in one place. I'm not asking for your medical advice, but what you would do in my situation.

I've written in other posts how I haven't been well for 2 years, since I [redacted]. I suffer from almost [redacted] since then. I am constantly tired, never feel rested and only have 2-4 hours a day when I have a decent ability to work. I get very easily [redacted] and stressed by things I never had problems with before. I used to work 10 hour days, then work out for hours, then have a social life and never felt tired like this. Things like using public transportation for an hour makes me tired. Practical things must be limited. A short 1 hour flight makes me dead tired. I also have a [redacted] from the same accident where I [redacted]. That too gives me pain. If that wasn't enough, some months following my accident I got a [redacted] which left [redacted]. During neurological test I [redacted] but doctors think it is from [redacted] and not related.

Today a neurologist told me that my condition was likely to be permanent. Meaning, when I've had it like this for almost 2 years, there is no reason to believe that I will improve and that further treatment is only to make life as tolerable as I can.

This is quite a blow for me. I have one last chance, which I asked him to do, which is getting tested for [redacted], which happens in some cases of [redacted]. That condition is treatable, but at this point it is probably a long shot. Other than that, I am looking at life functioning at 25% or so of my previous life. I am only [redacted]. I am eligble for different kinds of social security benefits so I won't die in the streets.

I don't really know what to do anymore. I haven't even gotten a proper diagnosis because doctors suspected all kinds of dangerous disease based on MR scans. Fortunately those should be ruled out. It's been a struggle because [redacted] like this is difficult to get acceptance from people around you.

In the beginning of this 2 year period I did everything I could to get a diagnosis and treatment. I paid out of pocket for private treatment [redacted] without result. I tried very hard to speed things up while I had income still, but felt largely that doctors didn't understand my position as [redacted] and not able to go on "sick leave" [redacted]. I was even treated with suspicion, told that my [redacted] and "just something you have to live with". In reality it was [redacted], known as quote "the most painful [redacted]". I might get financial compensation for the malpractice the doctors did there.

If you read this far, what would you do in my situation, where would you look? What would you do?
 
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#2
What I would do in your situation is not give up.

I personally know two people (and heard of many more) that were told by doctors there was nothing they could do to treat their terminal conditions, and all treatment would be just to improve the quality of their remaining life. These people researched different methods and treatments for their conditions, found a natural remedy, and are now cured of their diseases.

To give you an example, one of my Father's good friends was diagnosed with terminal cancer 3 years ago. The doctors said he had 3 months to live. After hearing something on the radio about the spice Turmeric helping a cancer sufferer he decided to start taking a daily dose of it. A year later he went back to the doctor to find out why he was still alive. The cancer had completely disappeared and he was cured.

Now that might have just been a coincidence, but I'd like to think that the world is full of natural resources that have been healing man since the dawn of time, long before modern medicines were invented.
What I am trying to say is that even though you have been given a poor medical outlook, there may be other methods and treatments available that you can find with a bit of research.
 
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#3
Research as much as you can and go see more specialists to get a second opinion. Unfortunately some medical professionals will give you false information/diagnosis.

I wish you all the best.
 
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#4
Been dealing with this for over a year now... not as bad as you, but for months on end exhausted by 9am, non-restful sleep wake up feeling like I got hit by a truck, unexplainable anxiety/brain fog, and on and on. To say creative work the past 6 months has been a struggle, would be putting it lightly.

I don't know what to tell you to do because the circumstances are so complex... and I still haven't figured it out for myself. The only thing I can think of you could try, is aligning the rest of your body to that whatever is causing your brain to not be able to heal, is improved. What I did was stop looking to western medicine for help of any kind. I'm not dead, nor critically injured, and the outlook offered by "specialists" is often bleak at best.

Some basic things to start with without knowing your medical history:
  • do you have heavy metal toxicity? (hair mineral analysis, get one from ARLTMA, you'll need to see a functional medicine doc to submit labs, still cheap. TONS of neurological symptoms can be caused by this... environmental toxins, metal in your mouth, vaccines, etc... Still working on my own personal detox, only 3 months in, so can't comment on the best regimen as of yet. Point being, optimal brain function is hard to get when excess metals are present in the body/brain. Whether this applies to you, I'm not sure, but it's more common than you'd think and could potentially stop things from working the way they should... making it pretty fucking hard for brain repair.)
  • work on your beliefs. I can tell from your writing, your mind needs a little pick me up. (monroe institute tracks, steven halpern, jeffrey thompson. Setup daily rituals using tracks that appeal to you, so you can give your mind a break from constantly thinking about this. The health thought loop is addictive even if you don't realize it, further stressing you out, which you're probably not aware of anymore.)
  • how sedentary are you? I know it's tough to think about exercise, but you need to move even when you don't feel like it. Walking is best, 90 minutes. Go to a park, you need space... literal visual distance/space, without screens, no phones. (the book: Spark)
  • IR Sauna. Coffee enemas. Supplements up the yin yang. Juicing. Acupuncture. (do everything you can to reduce toxic load, and get more oxygen and nutrients to your brain 24/7)
  • Resources to start reading: selfhacked.com, jackkruse.com, ben greenfield podcasts, andy cutler, etc...
  • You could go somewhere like Hippocrates,
I don't know if any of this is right for you, but maybe just looking into something will help you stumble onto the right thing that gives you some improvement.

Where do you live?
 
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#5
Been dealing with this for over a year now... not as bad as you, but for months on end exhausted by 9am, non-restful sleep wake up feeling like I got hit by a truck, unexplainable anxiety/brain fog, and on and on. To say creative work the past 6 months has been a struggle, would be putting it lightly.

I don't know what to tell you to do because the circumstances are so complex... and I still haven't figured it out for myself. The only thing I can think of you could try, is aligning the rest of your body to that whatever is causing your brain to not be able to heal, is improved. What I did was stop looking to western medicine for help of any kind. I'm not dead, nor critically injured, and the outlook offered by "specialists" is often bleak at best.

Some basic things to start with without knowing your medical history:
  • do you have heavy metal toxicity? (hair mineral analysis, get one from ARLTMA, you'll need to see a functional medicine doc to submit labs, still cheap. TONS of neurological symptoms can be caused by this... environmental toxins, metal in your mouth, vaccines, etc... Still working on my own personal detox, only 3 months in, so can't comment on the best regimen as of yet. Point being, optimal brain function is hard to get when excess metals are present in the body/brain. Whether this applies to you, I'm not sure, but it's more common than you'd think and could potentially stop things from working the way they should... making it pretty fucking hard for brain repair.)
  • work on your beliefs. I can tell from your writing, your mind needs a little pick me up. (monroe institute tracks, steven halpern, jeffrey thompson. Setup daily rituals using tracks that appeal to you, so you can give your mind a break from constantly thinking about this. The health thought loop is addictive even if you don't realize it, further stressing you out, which you're probably not aware of anymore.)
  • how sedentary are you? I know it's tough to think about exercise, but you need to move even when you don't feel like it. Walking is best, 90 minutes. Go to a park, you need space... literal visual distance/space, without screens, no phones. (the book: Spark)
  • IR Sauna. Coffee enemas. Supplements up the yin yang. Juicing. Acupuncture. (do everything you can to reduce toxic load, and get more oxygen and nutrients to your brain 24/7)
  • Resources to start reading: selfhacked.com, jackkruse.com, ben greenfield podcasts, andy cutler, etc...
  • You could go somewhere like Hippocrates,
I don't know if any of this is right for you, but maybe just looking into something will help you stumble onto the right thing that gives you some improvement.

Where do you live?
Thanks, this is all good advice. I've been thinking about IR sauna for sure. I'm also legit poor now so I can't just buy stuff or spend on private treatments. The welfare state did me a real number trust me. They spent a year on what I could get in a week in a private hospital.

I don't really want to say where I live, but it's [redacted].

I am actually quite active this summer, go outside, walking, riding bicycle, fishing, still dead tired when doing it, but I am in decent shape, at least not significantly subpar.

Nothing will change my [redacted] though. Only it keeps it from being "really bad". When I am active and get sunlight I have a decent quality of life if I can go at my own pace. When not active and getting sun, I get pain and all kinds of problems.

Not knowing what is wrong is the worst. I can't help speculate if I have some hidden cancer or something. A friend of mine had [redacted] for years before being diagnosed. He was also dead tired,but he did lose weight first.

I really want to attack this thing, but how can I do that when I don't know what it is and can't get a proper answer from doctors? If it is [redacted], then I need to get [redacted] and various things. If it is [redacted], then there are things to do for that.
 
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#6
It sounds very much like "M.E." from what you have said - but I do agree that seeking alternative diagnosis and looking into other options may help. I also suffer from the "hit by a truck" feeling some mornings, but that usually has to do with the amount I am snoring and my wife gets pissed off and wakes me up. Broken sleep, even without me being fully aware, is something that can really pull you down over time. Also something worth looking into.

I also have a friend who had an invasive and terminal brain tumour, tried a few open skull operations to no avail and was looking at 3 months max. He used cannabis oil (CBD) to treat himself and the tumour vanished.

As with all these things, I am assuming that coincidence plays a heavy role here too - but seeking other options is important.

I assume you have already read this sort of information?
 
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#7
Head up, chin up.

Getting a medical diagnosis like this can be scary. I was diagnosed with Bells Palsy years ago but I got lucky and beat it.

I'm not comparing it with what you have. I'm not saying that what I have is worse than what you have or as bad as what you have. When you get a diagnosis like this, it can either eat you up or it can be a life changing moment for you.

I am the same age as you OP. I would tell you this. For business, even if you are operating at 25% - which is much less than 100% - it's still greater percentage than effort most people put into a business, which is 0%.

For your health, yes look into alternative treatments. See if there is support groups and learn as much as you can about it so you can minimize your symptoms. Maybe there is a food you can cut out of your diet that might let you operate at 30%.

Good luck bro.
 
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#8
You have gotten a lot of good advice here, I would just add that if it was me I think I would want to become very mindful of what I spent those stronger hours doing. If you are mindful you can accomplish more in that time than most people will in a full day with none of the restrictions you have. That doesn't mean though over exerting yourself, it just means being a master time manager. Ruthlessly pruning your task list down to the most important things will give you a competitive edge. Delegating when possible and creatively finding the shortest distance from A to B (because you have to) means you can create incredibly efficient processes.

The discipline required to succeed in spite of your limitations could just well make you a force to be reckoned with in your industry. I recommend the book: David and Goliath: Underdogs, Misfits, and the Art of Battling Giants by Malcolm Gladwell. I read it after it was discovered that my oldest daughter has irreparable brain damage. This means she is dyslexic, epileptic, has short term memory problems and developmental delays. I was devastated for her, for what I thought it meant for her future. It meant she might never read fluidly, it meant she could never live alone. But because of her language delays and her dyslexia, she took up drawing pictures as a form of communication as a toddler. She is incredibly talented, shocking to me as I have zero artistic ability and neither did my late husband. She also plays the piano beautifully, again.. shocking. She got a full scholarship to an arts based private elementary school here based on her contributions to local youth art shows. She's happy, bright, has lots of friends and loves her life. What was I worried about?

That's not to minimize what you are facing, not one bit. And it's not to say that you should not take the advice given here about getting second opinions, doing your homework and trying different things to improve the outcome. I just wanted to say even in the worst case scenario, even if it is 25% for the long haul, there is still a whole hell of a lot of potential for growth, success and happiness. It's not game over.
 
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#9
cannabis oil (CBD) to treat himself and the tumour vanished.
I've seen in person and on various independent documentaries the power of cannabis, totally reversing or blocking/redirecting/re-mapping brain diseases. I'd 100% look seriously into this. You have nothing to lose trying.

Also you may want to try changing your diet to increase brain function and physical/mental energy.

Try a trial month on plant based diet or 80:20 plant/meat at least. Include fresh juiced (blended not centrifugal) fruit and veg daily. Cut out caffeine and sugar as they give you lows too.

When your energy really drops do you rest up immediately? If you do, try forcing yourself to walk for 30mins to try to reprogram your energy boundary.
 
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#10
Thanks guys, you remind me why I love(d) this business. There's no lying down and rotting away with you lot or kind, but ineffective suggestions :smile:

I think my next step has to be to get some specialized blood samples done, from the link Tao gave me, there was some very specific diseases I need to rule out. I am already set for the hormone panel. If all these samples check out ok then I will do a month of [redacted] (I tested positive for this too). If that works great, if not I will work with the [redacted] theory and look into every treatment there is. It would also be easier to get some stimulants if that is confirmed.

As an aside, I was picking up a [redacted] yesterday and had to stop after a while cause I got really [redacted] and uncomfortable driving in the dark with sharp lights. Does suggest to me something with the [redacted].
 
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Andrey

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#11
Look into fasting, dry fasting, juice fasting. Check out Dr. Robert Morse and Master Fast System. MFS is a comprehensive system that incorporates, intermitent dry fasting and juice fasting for an exteneded periods of time (40-108 days). Many people have dealt with their neurological issues and various fatigue/slugishness/tiredness issues using this system.

Our bodies can heal anything if you allow them to do it, if you free them up from digesting food, give them a good rest and open up elimination channels. Once lifetime worth of mucus, toxins, acids, molds, parasites and other crap leave the body, the body can regenerate any tissue. Miracles can happen.

I would not go to "white jackets", they have no clue about real healing and are among the leading causes of death worldwide.
 

Syrinj

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#12
If you're at a point where you're willing to try anything, I would start with Chekd. Recommend looking up Dr. Aaron Grossman. He does mainly preventive medicine not covered by insurance (his practice is rather "outside the box"). Especially if it's a hormone issue (thyroid or test), he holds himself out as an expert on the topic. Just brace for recurring payments because, again, he's outside the box and generally not covered by insurance. Also, I should add that I've never tried him myself, so recommend researching on your own first.
 

ks1905

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#13
I would explore the Lyme Disease angle. You could still have some Lyme symptoms and they are now finding a link between Lyme's with both Chronic Fatigue Syndrome & Epstein Barr.

The dizziness and problems with lights at night could also be lymes.

I'd look for some advice on lymes forum like at http://www.healingwell.com/community/default.aspx?f=30 . It looks like it is very active.

My father was a still dealing with Lymes symptoms after treating it 2 years ago.
 
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#15
I need some smart thinking and tough love again.

I had some good months since last I posted, but since December I felt like absolute shit. I mean, [redacted]. Seriously bad, had to go to ER with [redacted] even. Diagnosis, [redacted] (had that months ago). In any case, not doing well over the winter. I got a Vit D test which was significantly low, like half the normal range.Began taking Vit D supplements.

I just realized it's been 3 years now since my accident.

I still don't know if my illness is accident related or some yet to be discovered illness. Or a combination of accident and something else.

What I do know is that I need to make some kind of effort at a more conclusive diagnosis.

I need closure on this.

What I can do:

1) Try to lobby government healthcare for even more tests (which?)

2) Try to earn enough to go to [redacted] for cheaper private health care

3) Move to the country where I have the most family and at least get some emotional support (will be difficult as long as I'm ill and on government financial support).

I don't like to whine, but I've been feeling like shit for a month and a half. I wake up smashed every day. My [redacted] hurts. I feel very [redacted] in the morning (they say it's [redacted], but I don't know). Even more [redacted] than normal.

A neurologists diagnosed me with [redacted], but what the f... does that help me? I don't even tell doctors I have that diagnosis since I know it is an easily abused (for financial benefits) diagnosis.

I wish I was still in [redacted] and could just go to [redacted] for testing. I can't shake the feeling that 2 weeks of testing there would solve this :(

Thanks for reading.
 
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Ryuzaki

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#16
I've started taking Vitamin D on a whim about a year ago. Within 24 hours my disposition towards life in general and my temperament in general changed positively in a big way. I had read that we're all Vitamin D deficient at this point. We work inside, hang out inside most of the time, and when we're outside we have clothes covering us. It was a huge help. I was taking 2000 IU's at first and then bought some 1000 IU pills and it seems just as good.

I know what you mean in terms of connecting your illness to your accident. It seems like an obvious connection but as we know, correlation doesn't imply causation. I'd get everything tested though, down to testosterone, magnesium, and whatever else. You never know. I need to do the same thing. I'm getting older and older and haven't had a general checkup my entire life.

There's always the angle of it being psychosomatic too, like residual trauma from the accident being acted out by your brain in an attempt to reconcile and assimilate the incident. I'd leave that as the last angle to explore, but it's a real one that happens.
 

Bastion

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#17
Sorry to hear all that man.

I'm 6 years down this rabbit hole myself, starting at age 27. I've bounced around so many allopathic, naturopathic, homeopathic, Chinese medicine, energy medicine, and natural diet and therapy modalities I've lost count. Tons of testing done. Tons of consultations, often laughed out of the offices of M.D.s that wrote me off as a head case or a malingerer since I'm young. Never really found anything conclusive other than elevated EBV (Epstein-Barr Virus), a few kind-of positive Lyme titers, and a high ANA marker but no actual auto immune disease identified. I went down the Lyme rabbit hole myself, tried Doxycyclin, saw a Lyme specialist and dropped a lot of money (all out of pocket), and didn't get any better. Actually just kept getting worse.

I wish I could say I'm all better now... but I'm still battling it out myself. HOWEVER, I really do feel I'm zeroing in on the cause and the cure. I'm rather convinced this is all viral, and particularly the ravages of an advanced and aggressive strain of the Epstein-Barr virus (EBV) and possibly a few opportunistic co-infections that may be taking advantage of my lowered immunity.

I'm learning that the vast majority of the population has some form of EBV, some get mono symptoms upon initial infection, but that the virus stays with you and can lay dormant until some kind of physical trauma (injury, insect bite, sleep deprivation, over working) or even emotional stress (death of loved one, really bad breakup, etc) where your immune system takes a hit. At this point it can very rapidly start attacking organs, tissues, and nerves throughout your body. That's one of its key characteristics -- it can move fast. New symptoms can come and go, fast. And the name "Chronic Fatigue Syndrome" does not do this virus any sort of justice. This is on the level of Lyme disease, MS, etc... and I question if most chronic Lyme diagnoses are really just EBV taking advantage of susceptible individual's compromised immunity from living on a poisoned planet.

So when I look at how you described your onset of symptoms starting with severe physical trauma and then you're magically beset with a chronic systemic inflammatory disease for years afterward... I tend to look at the EBV theory in your case as well.

How does this help you? Well, conventional medicine basically has nothing to offer for viral infections. But I'm finding that the natural world has plenty to offer. Basically, I've settled on a diet, herb, supplement, and fasting regimen that is anti-viral, anti-bacterial, anti-parasitic, anti-fungal, as well as detoxifying of heavy metals and other environmental chemicals and pollutants. From 6 years of looking into this stuff, I really think that's the best you can possibly do no matter what the actual pathogen, injury, or diagnosis really is. I think the bottom line is when you're dealing with chronic illness, you have to heal yourself rather than waiting for someone else to heal you.

What this looks like in practice is a mostly plant based diet with a very high amount of raw vegetables and fruits, vegetable juices, sprouts, sea vegetables, algae, culinary and medicinal herbs, and natural food based supplements. Keep in mind this is a diet to save your life, not a diet for life. You can of course relax into a less strict diet once you're better while still retaining the core of the disease preventative components.

Before you go down too many rabbit holes or risky protocols like long term antibiotics, I highly encourage you to give one of these "cure all that ails you" natural diet, supplement, and fasting regimens a real try for at least 6 months. Some have reported miracles from single courses of juice or water fasting alone (but especially water fasting) -- including the healing of injuries.

Everything I've written is, of course, massively controversial. There's at least a thousand contradictory opinions that the internet at large would love to challenge me with. That's the unfortunate nature of the corner of reality you've landed in: nobody agrees on anything. You have to be your own advocate, investigator, and test subject. I'm just offering what I've arrived at after being at this a few more years than you. PM me if you want more specifics or have any questions.

A few people to google / YouTube I think are closest to the mark: Dr. Robert Morse, Dr. Brian Clement, Dr. Joel Fuhrman, and Anthony William (my regimen is currently heavily inspired by him). Oh, and a really good chiropractor is probably going to be your best bet for non-surgical treatment of the actual injury site. There are a lot of quack chiropractors that just try to get you to come back 5 times a week forever and spend 3 minutes with you, but a real one that takes the time to really work on you and knows their shit can perform miracles. Try to find one that is very highly recommended. Surgery may still end up being the best option but you may as well see what can be done before you go there.
 
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#18
There's always the angle of it being psychosomatic too
I know, this is something that I would want to be true.

Here is the thing though, a part of my well being (lack of it) is definitely isolation and depression, I feel better when out and around talking to people. I get a definite boost.

The problem is, there's no amount of positive mindset that will change that I will wake up the next morning still feeling like a really bad hangover (without the drinking). If anything the endorphine rush just acts as a [redacted]. I was on an [redacted] for a while which I quit. It also elevated my mood (a side effect), but didn't give me more energy. It did take the pain away. I do wonder how much is pain related. Significant pain might play a large role in this in regards to sleep and stress levels. I did have headaches before my accident, but it could have been the beginning of the [redacted], just not diagnosed.

To conclude, it's not psychosomatic,it really isn't, even if I have hoped for it to be. I don't deny having certain psychological issues, though I doubt I could be diagnosed clinically with anything. It does make it worse for sure.

One thing I seem to recall is that I felt like was in fact recovering a month or so after the accident. I did a trip to [redacted] for a job position (online biz) for example, something I would feel hard to do know. It was only after I got the [redacted] - diagnosed), that I felt this [redacted] in the daytime:

"...[redacted] usually is characterized by the acute onset of [redacted]"

Yes that is what I remember, though the doctors told me basically that I just had "[redacted]". I wonder if that pain coupled with stress triggered some kind of overload of the nervous system.

In any case, I am apparantly having a "flare up" which I hope will pass like it has the other times.

A few people to google / YouTube I think are closest to the mark: Dr. Robert Morse, Dr. Brian Clement, Dr. Joel Fuhrman, and Anthony William (my regimen is currently heavily inspired by him). Oh, and a really good chiropractor is probably going to be your best bet for non-surgical treatment of the actual injury site. There are a lot of quack chiropractors that just try to get you to come back 5 times a week forever and spend 3 minutes with you, but a real one that takes the time to really work on you and knows their shit can perform miracles. Try to find one that is very highly recommended. Surgery may still end up being the best option but you may as well see what can be done before you go there.
I'm going to look into this.

I did physioterapy recently for my neck, which made it significantly worse, so I quit that.
 
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#19
I've started taking Vitamin D on a whim about a year ago. Within 24 hours my disposition towards life in general and my temperament in general changed positively in a big way. I had read that we're all Vitamin D deficient at this point. We work inside, hang out inside most of the time, and when we're outside we have clothes covering us. It was a huge help. I was taking 2000 IU's at first and then bought some 1000 IU pills and it seems just as good.
I've also had great results from taking a Vitamin D supp. Used to get sick in the winter at least once every year. Started taking 2000 IUs of D every day. My constitution has improved and my body is able to fight off colds and flu much better now. And if I feel something coming on, I immediately down some Sambucol (zinc) every 3 hours to help ward it off.

BTW...there have been studies done on Vitamin D and it's now thought that people who live in cold parts of the world are getting more types of illnesses. One, they aren't getting enough vitamin D in their diet. And two, they aren't getting it from the sun because it's too cold to go outside during the winter months. Therefore, the lack of the vitamin is contributing to their overall wellness.

You won't hear Big Pharma telling you to go take Vitamin D though because they can't monopolize the market on selling you that pill. They'd rather you not take it so they can sell you something else to fix that later on when you are actually sick.
 
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#20
The below as much for my further planning (dear diary), but feel free to weigh in.

[redacted]

The plot thickens.

[redacted]

Interesting.

[redacted]

It did take the pain away. I do wonder how much is pain related. Significant pain might play a large role in this in regards to sleep
mmmk

[redacted]

This is imo VERY interesting for me.
 
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