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Bedridden for 11 years, he discovered a surgery for his adrenal condition

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Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#71

Post by sjg007 »

vimy wrote: post #67
sjg007 wrote: post #65

Earlier quoted context omitted.

You can't treat lyme disease years after the initial infection. So they really only test if you see the bulls eye rash and prescribed antibiotics. I think they might just prescribe the antibiotics if they see the rash. The knee swelling and pain comes much later. So what the doctors said was in fact correct. https://www.mayoclinic.org/diseases-conditions/lyme-disease/...

This is incorrect and based on outdated research. The research that shows persistent Lyme is real is piling up but the medical community seems slow to accept this fact.

Citation? The CDC and NIH disagree with you.

https://www.cdc.gov/lyme/postlds/index.html

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#72

Post by mkagenius »

nullwasamistake wrote: post #68

This guy seems crazy. There's a million things they can give you for energy so you don't lay in bed all day. Also, the hell is he choosing to lay in bed over sitting in a nice comfy chair? The only reason bedridden people are in beds is to make it easy to roll them over and hook them up to machines. This guy didn't need either. It doesn't take a decade to discover adrenal gland issues, I think this guy is a basket ca…

> The only reason bedridden people are in beds is to make it easy to roll them

Not sure if you have ever fallen ill and had fever. That thing will make you want to lie on the bed.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#73

Post by dreamcompiler »

Related: A great article on HN member mattmight a few days ago. Matt's a brilliant computer scientist and teacher who was inspired by his son's condition to switch careers and investigate rare diseases full-time.

https://www.statnews.com/2019/07/25/ai-expert-writing-code-s...

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#74

Post by asveikau »

sjg007 wrote: post #71
vimy wrote: post #67

Earlier quoted context omitted.

This is incorrect and based on outdated research. The research that shows persistent Lyme is real is piling up but the medical community seems slow to accept this fact.

Citation? The CDC and NIH disagree with you. https://www.cdc.gov/lyme/postlds/index.html

Both this article and the mayo clinic one say that post Lyme disease syndrome is real and without a cure. So if she did have PLDS and the commenter is correct and that the doctors simply called her "hysterical" and left it at that then it cannot be said that they were correct.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#75

Post by h2odragon »

Mc_Big_G wrote: post #55

Doctors were baffled. Treatments didn't help. And Lindsay eventually realized that if he wanted his life back, he would have to do it himself. This applies to almost any health problem you might encounter in the US. It's rare to find a doctor who actually cares and even more rare to find one that will dig deep to help you. One of the greatest lies ever told is that you can trust your doctor and that there isn't more…

You probably can trust your doctor, but look at his situation. You're one of how many patients he's seeing today? You're a valued customer and the Doctor even likes you, and still he cannot give your problems a fraction of the attention you do.

I find it puzzling that so many people's first (and often only) reaction to health problems is "see what the doctor says," never granting themselves agency or permission to conclude they're actually sick or try a treatment that someone else didn't recommend.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#76

Post by DangitBobby »

sjg007 wrote: post #64
fiblye wrote: post #61

Earlier quoted context omitted.

I’ve got a relevant experience to back this up. I had a urinary tract infection that I felt progress up to my bladder and eventually into one kidney and then the next. I would’ve liked to visit a doctor immediately, but with American medical costs being what they are and hospitals advising me to hold out a few more days until a doctor in my insurance network was available, I’d hoped that small stinging pain down ther…

That sounds weird. If he really thought kidney stones then why not order an ultrasound? Also why not go to the ER? Your insurance has to cover it.. I guess it would depend on your coinsurance/copay though..

Not necessarily. If it turns out it wasn't an emergency after all (just appeared to be), or if the insurance company decides that the remedy wasn't medically necessary (but the doctor treating you at the ER did), some states allow insurance companies to deny claims. They are slowly trying to unravel all of the protections created by the ACA, and they are succeeding.

https://www.vox.com/policy-and-politics/2018/1/29/16906558/a...

>His company uses Anthem, one of the country’s largest health insurance plans. In recent years, Anthem has begun denying coverage for emergency room visits that it deems “inappropriate” because they aren’t, in the insurance plan’s view, true emergencies.

>The problem: These denials are made after patients visit the ER, sometimes based on the diagnosis after seeing a doctor, not on the symptoms that sent them, like in Cloyd’s case.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#77

Post by dahauns »

isseu wrote: post #42
RealityVoid wrote: post #25

Earlier quoted context omitted.

Reminded me of this comment I encountered on HN [1]. Leo Szilard invented his own Cobalt 60 treatment and cured himself [2] [1] https://news.ycombinator.com/item?id=11334660 [2] https://en.wikipedia.org/wiki/Leo_Szilard#Cancer_diagnosis_a...

Cure himself and discover a new cancer treatment? Wow

Well, We're talking about Léo "I built the first nuclear reactor with Enrico Fermi" Szilárd here... :)

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#78

Post by mistermann »

joshgel wrote: post #59

> Lindsay suspected his body was producing too much adrenaline. He knew of a drug called Levophed, which is approved by the US Food and Drug Administration to raise blood pressure in some critically ill patients. Levophed is basically an injection of noradrenaline, which counters the symptoms created by excess adrenaline. This is incorrect. norADRENALINE is a more specific version of ADRENALINE made in different part…

If ~every doctor is familiar with his condition, and there are no problems with the medical establishment that contributed to this situation, how did it come about that he was never treated for it, and he had to (allegedly) propose a new surgery in order to treat it? And the whole process took over a decade? And doctors (allegedly) now voluntarily consult with him on obscure cases?

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#79

Post by trollied »

If anyone else reading this thread has ever felt, or is currently feeling, utterly dog shit, it could just be stress.

I had kidney pain, chest pain, migraines, felt sick constantly, fatigued... I look after myself. I run, rock climb, eat ok, not overweight. The doctor was very worried, gave me anti-sickness tablets as a first thought, ordered every single test imaginable.

It was just stress, I didn’t think work was doing that to me.

Had some conversations with HR, top management listened, unrealistic dates shifted. I got better almost overnight.

I’ve read a number of comments here that possibly could be the same, so I hope this helps somebody.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#80

Post by vimy »

sjg007 wrote: post #71
vimy wrote: post #67

Earlier quoted context omitted.

This is incorrect and based on outdated research. The research that shows persistent Lyme is real is piling up but the medical community seems slow to accept this fact.

Citation? The CDC and NIH disagree with you. https://www.cdc.gov/lyme/postlds/index.html

They are wrong and are severely mismanaging Lyme. For example, the blood test endorsed by the CDC shows a 53 % sensitivity yet they claim testing is adequate. In reality, it's not much better than flipping a coin. They also claim there is no persisent Lyme. Here are two recent studies that contradict what they are saying. And that's just the tip of the iceberg.

The Emerging Role of Microbial Biofilm in Lyme Neuroborreliosis[1]: "The early treatment with oral antimicrobials is effective in the majority of patients with LNB. Nevertheless, persistent forms of LNB are relatively common, despite targeted antibiotic therapy. It has been observed that the antibiotic resistance and the reoccurrence of Lyme disease are associated with biofilm-like aggregates in B. burgdorferi, B. afzelii, and B. garinii, both in vitro and in vivo, allowing Borrelia spp. to resist to adverse environmental conditions. Indeed, the increased tolerance to antibiotics described in the persisting forms of Borrelia spp., is strongly reminiscent of biofilm growing bacteria, suggesting a possible role of biofilm aggregates in the development of the different manifestations of Lyme disease including LNB."

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease[2]: "Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined."

If you want to know more, here's a thorough critique of the current Lyme policies.[3]

[1]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6287027/ [2]https://www.ncbi.nlm.nih.gov/pubmed/29662016 [3]https://waset.org/Publications/obstruction-to-treatments-mee...

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