If you had a 100.000 dollar gift card for testing & treatments what would you do?

vision blue

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Sk2018 was a British citizen working in Hong Kong when he contracted HSV1 encephalitis. He flew home to the UK where doctors were unwilling)unable to diagnose him or treat him, so he returned to China, where he found a helpful immunologist at a hospital in Shanghai who properly diagnosed him and treated him with a number of things including Rituximab and Bortezimub to remove the antibodies that were producing his symptoms.

I'm not exactly sure where he went after that, but he ended up in a German hospital where they failed to understand his previous medical history or follow up appropriately. It seems that his autoimmune antibodies returned and that plasmapharesis, Bortezimub or Rituximab may have removed the antibodies again, yet the hospital just left him to rot and he died, tragically, at 38.

Running around the globe and getting care piecemeal in different languages is not optimal.
We must be talking about Sean? Still haunts me. The thing is, if it really was HSV1 encephalitis, he would need IV antivirals. Giving those meds that wipe out antibodies would make a person feel better in the short run but would make condition worse as the virus flourishes. Im not sure he had evidence if it was autoimmune encephalitis vs viral encephalitis. Ad if he had both, thats especially challenging. . Also haunts me because especIally because i had so many of the sane things as him. One of my takeways was that pursuing every possible treatment in whatever country will treat you (and many young, eapecially men try one treatment after another relentlessly) may not be the best approach to this beast either- give body more tine. If i reached the wrong takeaway and misapprehending what happened with sean over his years on the list, someone please correct me .

ive been debating whether or not to Give answer in this interesting thread premise . I assume with the 100K we’d also get A prescription pad and All ordering privileges? Thats the big constraint for me.

On rest of learners post, i doNt see why a smart well read person shold have to convince MDs of anything to get the care they need. Id like if the med system had an “opt ou” clause where you can be ykur own PCP. These folks have all contributed to killing me because they arent as knowlegeble or smart as I am. One of my internist misi trepreted law and accused me of trying to practice medicine without a liscence whereas i i am just trying to save my own life.
 

Learner1

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We must be talking about Sean? Still haunts me. The thing is, if it really was HSV1 encephalitis, he would need IV antivirals. Giving those meds that wipe out antibodies would make a person feel better in the short run but would make condition worse as the virus flourishes. Im not sure he had evidence if it was autoimmune encephalitis vs viral encephalitis. Ad if he had both, thats especially challenging. . Also haunts me because especIally because i had so many of the sane things as him. One of my takeways was that pursuing every possible treatment in whatever country will treat you (and many young, eapecially men try one treatment after another relentlessly) may not be the best approach to this beast either- give body more tine. If i reached the wrong takeaway and misapprehending what happened with sean over his years on the list, someone please correct me .
Yes, that was who I was referring to. I think we would have to reread his many posts following the trajectory of his illness. What I understood from them was that he did contract HSV1 which triggered neurological autoimmune antibodies. What I understand the treatment to be is to beat back the virus with antivirals, support the immune system, then get rid of the antibodies with plasmapharesis, Rituximab and/or Bortezimub. This video described some of this - it gets interesting around minute 58:


None of this is easy, and antibodies can return. Unfortunately, we will never know all the details of Sean's illness.

I do think one of the lessons to be learned is that it's ideal to have a coordinated team of doctors who can provide continuous care over a lengthy, complex illness, but honestly, I think that this is currently beyond the realm of any current medical system, except perhaps Nancy Klimas' clinic.
On rest of learners post, i doNt see why a smart well read person shold have to convince MDs of anything to get the care they need. Id like if the med system had an “opt ou” clause where you can be ykur own PCP. These folks have all contributed to killing me because they arent as knowlegeble or smart as I am. One of my internist misi trepreted law and accused me of trying to practice medicine without a liscence whereas i i am just trying to save my own life.
Unfortunately, there used to be the "Wild West" of medicine where anything went and patients died. Charlatans sold snake oil, or worse, poison, and care was not based in science. Then there was the era of standardization in the US, in the era of the Flexner Report and its aftermath, which then got exported to many other countries. Laws were encoded and medical boards empowered to protect patients from themselves and those would prey upon them, so that we could only be treated by those with 8 years of medical education.

Like you, I have educated myself a lot, and have amassed a library of resources and an understanding of the human body and medicine that has been helpful in my quest for health. Unfortunately, we did not get a medical degree and are left to try to convince our doctors (and clinics, hospitals, insurance, the FDA, and drug companies) to order tests and treatments that we believe will better illuminate and fix what ails us, it at least give it a good try.

The people we deal with on this journey have their own goals and constraints which may be in conflict with what we and our doctors are trying to do. At worst, it costs us in money or risky outcomes, while our doctors may lose their jobs, medical licenses, or reputations if they help us do something that seems right at the time but later proved harmful. So, we need to arm them with information to give them confidence to help us without risking undesirable consequences.

I sure wish this were easier, but, unfortunately, some not so smart or lucky people preceded us in this system...

So gathering good scientific information and resources, and sharing them logically with our doctors to have successes, and then exchanging info within a community like this to help others will gradually normalize good things that seem like fringe actions right now.
 

vision blue

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I
I do think one of the lessons to be learned is that it's ideal to have a coordinated team of doctors who can provide continuous care over a lengthy, complex illness, but honestly, I think that this is currently beyond the realm of any current medical system, except perhaps Nancy Klimas' clinic.

Unfortunately, there used to be the "Wild West" of medicine where anything went and patients died. Charlatans sold snake oil, or worse, poison, and care was not based in science. Then there was the era of standardization in the US, in the era of the Flexner Report and its aftermath, which then got exported to many other countries. Laws were encoded and medical boards empowered to protect patients from themselves and those would prey upon them, so that we could only be treated by those with 8 years of medical education.

Like you, I have educated myself a lot, and have amassed a library of resources and an understanding of the human body and medicine that has been helpful in my quest for health. Unfortunately, we did not get a medical degree and are left to try to convince our doctors (and clinics, hospitals, insurance, the FDA, and drug companies) to order tests and treatments that we believe will better illuminate and fix what ails us, it at least give it a good try.

The people we deal with on this journey have their own goals and constraints which may be in conflict with what we and our doctors are trying to do. At worst, it costs us in money or risky outcomes, while our doctors may lose their jobs, medical licenses, or reputations if they help us do something that seems right at the time but later proved harmful. So, we need to arm them with information to give them confidence to help us without risking undesirable consequences.

I sure wish this were easier, but, unfortunately, some not so smart or lucky people preceded us in this system...

So gathering good scientific information and resources, and sharing them logically with our doctors to have successes, and then exchanging info within a community like this to help others will gradually normalize good things that seem like fringe actions right now.
I am glad this works for you. I no longer have the patience or time to suffer fools and play a role in a play. You're either a better team player or better actor than me.

So that all solidifies what i would do with that 100k gift card we were all given in this thread to test and treat our illness.

i would use 75K of it to get the ear of those who can change medical policy. If one now has the legal right to obtain med records and test results (once we did not) and the right to order our own blood tests (now possible in many states) then this shows there can be fiurther changes.

i would lobby to change what i started describing in last post. i.e. Every citizen has the right to “opt out” and act as their own "pcp". If they do so, they would have access to all things mds do includdng billing insurance and subject to the sane insurance rules as an MD. They can also like an MD request consults with specialists, order imaging and other tests, order meds. (if the drugs are from a restricted class like opiates then they go thru the same red tape that MDs go through to argue that be used for their patients). . In exchange for this, one gives up the right to sue any doctor and of course the “right” to get a pcps management of care. So there's no big brother here. No one gets to decide who is and isn't smart or knowledgeable enough to take control. It's up to each adult citizen. The agreement one makes to opt out f conventional medical care can be revoked in writing at any time at which point they would go back to standard conventional arrangement.

so that's how id spend 75K to help my health.

the other 25K i would use to look into the feasability of building a community where people can live with CFS (chronic complex illnesses orf other sorts may be let in as well) . Small non toxic quiet easy to mantain houses in a community of likeminded individuals where members pay a small monthly fee (if can afford) so the community can set up what it needs- transportation help, handymen help, help lifting packagesm google search help, whatever. We are ourselves a helpful bunch so no doubt most would volunteer what they are capable of: teaching classes, cooking when others cant , hanging pcitures, whatever ones expertise and i terest is. No obligation of course and no judgement; it would just be a nice added thing to the paid vetted employees poeple in community could hire.

so after much bought, i think this is the how i can best help my illness with a 100K gift card to play with - invest in changing policy and look into building a leper colony.
 
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Learner1

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Every citizen has the right to “opt out” and act as their own "pcp". If they do so, they would have access to all things mds do includdng billing insurance and subject to the sane insurance rules as an MD. They can also like an MD request consults with specialists, order imaging and other tests, order meds. (if the drugs are from a restricted class like opiates then they go thru the same red tape that MDs go through to argue that be used for their patients). . In exchange for this, one gives up the right to sue any doctor and of course the “right” to get a pcps management of care. So there's no big brother here. No one gets to decide who is and isn't smart or knowledgeable enough to take control. It's up to each adult citizen. The agreement one makes to opt out f conventional medical care can be revoked in writing at any time at which point they would go back to standard conventional arrangement.
I have seen a lot of people do this in the cancer world, with mixed results. In it's best form, patients would educate themselves on the science, and the things they would choose to do would be based on their individual needs. I agree, and I sure would be for doing this, although some of the treatments that have helped me the most have been extremely expensive, and I've needed to have the support of either my insurance or the patient assistance program of a pharmaceutical company to help. Unfortunately, drug companies are charging outrageous sums because they can. And one thing that's happening right under our noses is that things that we have been able to buy as supplements are being quietly developed as "orphan drugs" For some rare indication so that the pharmaceutical company can charge an even more exorbitant price. So, having the knowledge and the will, but not a large amount of money, might prevent the strategy from being fully executable for most.
the other 25K i would use to look into the feasability of building a community where people can live with CFS (chronic complex illnesses orf other sorts may be let in as well) . Small non toxic quiet easy to mantain houses in a community of likeminded individuals where members pay a small monthly fee (if can afford) so the community can set up what it needs- transportation help, handymen help, help lifting packagesm google search help, whatever. We are ourselves a helpful bunch so no doubt most would volunteer what they are capable of: teaching classes, cooking when others cant , hanging pcitures, whatever ones expertise and i terest is. No obligation of course and no judgement; it would just be a nice added thing to the paid vetted employees poeple in community could hire.
I've very much thought the same over time. This is a really good idea! 😃
 

vision blue

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@Learner sais “ I agree, and I sure would be for doing this, although some of the treatments that have helped me the most have been extremely expensive, and I've needed to have the support of either my insurance or the patient assistance program of a pharmaceutical company to help. Unfortunately, drug companies are charging outrageous sums because they can. And one thing that's happening right under our noses is that things that we have been able to buy as supplements are being quietly developed as "orphan drugs" For some rare indication so that the pharmaceutical company can charge an even more exorbitant price. So, having the knowledge and the will, but not a large amount of money, might prevent the strategy from being fully executable for most.”

But part of the opt out deal im proposing allows one to keep the identical insurance benefits one had before. If theres so if a treatment is not affordable, then that would also be The same obstacle under conventional care.

Agree on how big pharma even trying to take over what weve enjoyed cheaply up to now on our own. I didnt know it was part of an orphan drug program. Sonehow reminds me of how whole foods keeps slowly and quietly removing familiar products and replacing them with Whole Foods and 365 branded versions . On big Pharma takeover, one exemple ive seen recently is a Neurologist suggested something I had never heard of and i looked it Up- it was a mixture of dexta..(cough syrup) and a drug that iNhibits Cytochrome p450 (To keep the drug in longer). One can just Then take cough syrup and grapefruit The latter of which is a P450 inhibitor. Im sure alot cheaper and less stressful than the big pharma version

(if this is off topic i wil have to put it in the off tplopic thread)
 

vision blue

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@Learner1 ”I've very much thought the same over time. This is a really good idea! 😃“

i bet there are quite a few. If it werethe 50s or even the 70s, id suggest a track of land in florida when they were practically giving it away. It might be possible to piggy back on programs in place- so tgeres The “village” thing i think its called. Problem i guess is it wont be ready rolight now, but id be ok with working on it for the next geneation of afflicted.