Strange bruises on my thighs

I have these strange bruises on my thighs — they’re almost in the exact same spot on each thigh (on the outside), but one is much bigger than the other.

I can’t remember bumping into anything…my sister is worried about my liver or kidneys, so I’ll go the lab and check all that stuff out…

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Remind me I need to talk to you about my swallowing

Remind me I need to talk to you about my swallowing — I feel like the muscles I use to swallow aren’t working right, like they’re snoozing on the job, which is causing choking like sensations sometimes.

The best guess I have what’s causing this is actually might be related to Scholerderma, but I’m not sure so I want to run it by you…

I always spend so much time yaking I sometimes forget the important stuff, lol…

(And the strange bruises on my thighs — I have one on each thigh on the outside, almost in the exact same spot on each thigh, but the left one is much bigger—like I bumped into something hard but I don’t remember doing that…it’s very possible I did though…I’m kinda klutzy 😜👍.)

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If you don’t ‘believe’ in Vaccines, *don’t* read my blog. You’re hop eless.

I’ve learned the hard way in life, some people will never be able to see, understand and/or accept the truth.

If you’re one of them, don’t waste your time reading my blog because you will never get it. Hocus pocus medicine won’t cure me. I need the hardcore slam it down strong type of medicine.

It pisses me off deeply into the core of my soul when normally healthy people risk their lives—and others lives—and their children’s lives—unnecessarily, as if being sick with an infection was some kind of joke…

https://www.yahoo.com/lifestyle/whooping-cough-making-comeback-heres-need-know-195336764.html

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Great analogy for explaining how limiting and bad current imaging studies are—and how future generat ions will see our current technology

Just as I was drifting to sleep, I thought of a good way to help non medical people understand how limited current imaging studies are in telling us what’s really going on inside the human body.

If the human body was the English language (keep going with me—it’s good :),

if the human body was the English language,

Then ***all*** the medical tests in the world are maybe 6 or 7 letters of our 26 letter alphabet.

So if a doctor is trying to figure out what’s going on — the doctor is trying to figure out how to read the sentence, so the speak —

A lot of how clearly and easily the doctor can read the sentence is based on where those 6 or 7 letters land in your sentence.

Maybe you got lucky, and got the first letter of every word, a vowel or two, and the doctor is able to read the sentence fairly easily.

But maybe your medical problem is missing all the letters entirely? Or maybe only shows one? Then what?

That’s why we all talk about doctors having ‘talent’. We feel it when we meet a doctor with ‘talent’, they see it in each other when they meet a colleague who has ‘talent’,

And that’s because consciously or not,

we know some doctors need fewer letters to be able to complete a sentence and thus get the meaning then other doctors.

If our medical tests were so great — and as good as companies and insurance companies want us to believe —

Then doctors wouldn’t even need talent, because the tests would all spell out the sentence directly for itself.

So what are these letters in my analogy? Biomarkers. Our current medical tests available to use don’t use enough biomarkers inside the body. In fact, there are hundreds (thousands?) of biomarkers we haven’t even discovered yet, let alone be able to add it into a medical test.

6 or 7 letters — that’s it. And some words form more easily with those letters, hence why these imaging studies are more accurate for certain things then others (like seeing a swallowed penny for example).

But asking our doctors — and insurance companies trying to push doctors in practice by this ‘evidence based medicine’ when the ‘evidence’ can only show us 6 or 7 letters of a 26 letter alphabet is ludicrous.

Doctors must continue to practice medicine the old fashioned way, then look to see if the 6 or 7 letters that pop up fit within the sentence they had already begun to form in their mind,

but basing or evaluating human healthcare on such limitations and calling it ‘the evidence’ causes more harm then good.

It doesn’t take someone with an impaired immune system to have a false negative MRI — it happens all the time. ‘Tumors get missed’ or ‘when the surgeon got in there it was much worse or much different than expected’.

Our current medical system sinks good healthcare by trying to wrap doctors minds around the million dollar ‘evidence’ machines,

when all they really should be doing is just listening to their patients —

There simply too many words that can’t even be formed by these tests, because the tests don’t have enough letters yet…

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Example — how to help Noah with his immune deficiency

Luke,

So Noah has been battling this cold for the last two weeks. He got a fever on Sunday March 18th, was very sick for a few days after that (so he spent most of spring break in bed), and he’s been sick ever since.

(None of this is particularly abnormal — this cold virus can take awhile to recover.)

However, the one thing I’m trying to teach Noah,

is that he has to balance his life in a way that accounts for his immune deficiency to try and maximize his health.

If he makes adjustments, it will help sustain him longer in life close to a normal functioning level for more years, then me, my father, my uncle, had etc.

(When I look back in my own life before I turned 30 (after 30 it was all downhill) but before 30, as long as I wasn’t working full time I was somewhat okay, because I was sleeping in, taking naps when I could, etc.)

Noah has a big paper due for English tomorrow (different from his other big English project due next week), but he’s still sick.

He’s been working all week, not gaming, etc,

but because he’s still sick I’ve been making sure he’s in bed at a certain time.

So tonight 10pm rolls around — and he’s still coughing, still blowing his nose, and after working all night on his Geometry and other English assessment,

I sat Noah down and we discussed a plan—

Basically what we decided, was that if he stayed up late to finish this English assignment, then turned around and had to go to school early, that it was too risky — his cold is still lingering (and might have even gotten worse a little over the last two days), and pushing it too hard tonight could set him back even more.

So we decided it would be best if he goes to bed at 10pm —still wake up for school at 7am—but instead of going to school, finish his English paper in the morning,

then hopefully Noah make it to school on time before the day is over so he can still turn in the paper, as well as go and see the Geometry teacher and take the quiz he’s going to miss by not going to school for 1st period.

This is a great example of what Dr. Crosby’s note to the school is for—I don’t believe Noah so sick he can’t go to school at all, but if Noah stays up late and doesn’t get enough sleep it’s too risky for him.

As much as the world may not believe him at times— because he looks so healthy—Noah needs to be smart and make adjustments. Then if makes smart adjustments, he will be okay much longer than I was.

This is the way to parent Noah — you have to be smart about it. Trust me, we’ve already pushed the limits with Noah many times and we’ve learned the hard way.

(Remember his back to back to back sinus infections back in pre-school, always turned into bronchitis unless it was treated? None of that has gone away, it’s just more under control because he’s in daily antibiotics. Take the daily antibiotics away, 100% he’ll be sick with a few weeks.

The reason I know?

Because we’re not the most complaint patients in the city of Los Angeles and whenever we’ve had relapses in picking up Noah’s medicines (or Noah not taking them and lying to me, then confessing when he’s sick that he didn’t actually take them—when I firmly stare. ‘I need to know if this is a TRUE breakthrough infection or you just STOPPED taking your antibiotics because it EFFECTS THE POTENTIAL COURSE OF TREATMENT’, then he’ll confess if he hadn’t actually been taking them…

Anyhow,

there’s been enough of these lapses in treatment then Noah getting sick, to know Noah still is extremely prone to infections.

I’ve started to pay more attention to the day to day symptoms, because Dr. Butte asked a very smart question a few weeks ago—he asked how long it took Noah to get over the flu he had on Dec 23, and when Dr. Butte asked that questionedX Noah and I just looked at each other — we honestly didn’t know —

( When you’re feeling like crap and sick to some degree every day, you don’t always pay attention to little details, one infection tends to roll right over to the next one.)

But when Noah and I got home after the appointment, we thought about it, and I remembered he was still really sick Jan 5-7, which was two weeks later, because I remember thinking Noah was supposed to be going on a trip with some students, and that I was glad the trip got canceled because Noah couldn’t have gone on it anyway.

So—I’m trying to keep better track of these things, which also means it’s making me more aware that Noah needs to build into his life his limitations, in order to minimize them—with the goal of keeping him as strong as possible, for as long as possible—

(Noah’s trip over the weekend for Acadeca he was in rough shape, but the team was sympathetic and supportive, but I also think it’s part of the reason why now Noah’s still sick—)

You have to manage Noah’s health carefully, and you have to help Noah manage his time carefully as well.

Hopefully tomorrow he will make it to school before the final bell with his paper in his hand, if not he can just turn it in next week. It’s better for Noah to rest then pull an all nighter right now…too risky.

Tara

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Finally! An article about bacterial resistance that mentions the real problem — that pharmaceutical companies don’t want to make new antibiotics because it’s not as profitable as other medicat ions

Finally an article that talks about bacterial resistance and mentions the *real* reason bacteria are becoming more and more resistant to known medications — because it’s not profitable to develop new ones!

I’m so tired of doctors getting thrown under the bus for ‘over prescribing’ antibiotics — hog wash! Any good doctor knows that if a patient is very ill with a respiratory infection, there’s *no way* to be 100% sure if it’s viral or bacterial until cultures come back—and even then cultures don’t alway catch the pathogen in question, for various reasons.

So if a doctor has a very sick patient, and they decide it’s a virus — which is a guess — and it might be the right guess 80% or 90% or even 99% of the time —

But the problem is when it’s the wrong guess, and now the patient has sepsis where a simple course of Zithromax or Levoquin might have prevented that problem —

How can a good doctor live with that?! It’s not just a simple ‘opps’, it’s a major failure of what basic medical care could have cured, but what, the doctor didn’t prescribe it, because maybe, might, one day develop a super bug?

What about the value of taking care of the patient in front of you?

I am **living proof** that a patient can be on *long term* antibiotic therapy and *not* develop a super bug.

And me—with a compromised immune system—if I’m not developing a super bug, then super bugs are not being created by doctors over prescribing antibiotics as some people want the public to believe.

(It doesn’t mean that I won’t develop a super bug one day, but after mostly an entire lifetime of antibiotics, to one degree or another, and 13+ years of iv antibiotics (for different reasons), if I develop a super bug now it definitely wouldn’t be any doctor’s fault. I’ve been a Petri dish in motion for a long time, and god knows if doctors hadn’t prescribed all of these antibiotics I would have been long time ago dead.)

Even if a patient only has a severe viral infection — antibiotics are *still* warranted to prevent the patient from developing a secondary bacterial infection while they’re fighting the virus and their immune system is down.

(Which is *exactly* what they think made the 1918 flu virus so deadly—it wasn’t the virus itself, it was the secondary bacterial infections that went along with it. Infections now that could be ‘treated’—but they can only be ‘treated’ if the physician understands (and isn’t shamed) into prescribing preventive antibiotics when a patient has a serious respiratory viral infection — and shaming is happening dangerously too often these days.)

Well, finally an article that nailed the problem — that it isn’t profitable to develop new antibiotics, so we the tax payers need to start government programs to do it for us.

We shouldn’t be letting people suffer unnecessarily — and encouraging doctors into forcing patients to suffer unnecessarily —- because of a problem that needs to be solved by new advances in medicine — and if we have to step up and fund it, then we need to step up and find it before these super bugs become common place.

But risking people’s lives for what a simple course of oral antibiotics could have solved?

That’s sociopathic. And cruel. And a failure of the basic code of medical ethics.

And we should be ashamed for every once promoting the philosophy of ‘overprescribing’ into the minds of the people who are supposed to be helping us — our physicians.

***

A man in the U.K. got a case of ‘super-gonorrhea’ — are you at risk too?

https://www.yahoo.com/lifestyle/man-uk-got-worlds-first-super-gonorrhea-risk-164950393.html

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Something I forgot to mention—I once had a positive blood test for IBS (IBS panel), the lab diagnose d Crohn’s, but clinically of course I don’t have Crohn’s

Dr. Kachru,

I don’t think I ever told you, but at Cedars I once did a IBS panel blood test, and the lab sent it back with a diagnosis of Crohn’s.

What’s particularly interesting, is that when you look at the breakdown of the blood tests, some of them were abnormal (IgE (?)

This test was done a few years ago, before I started IVIg on a regular basis. When I showed the results to one doctor (I can’t remember his name…somewhere on Wilshire), he was really fascinated by my results when clinically I don’t have the symptoms of Crohn’s, and I actually have the opposite problem — constipation.

He said there was something definitely usual going on with my results…I forgot about it, because I don’t have Crohn’s and he didn’t know what the results meant instead, but now that we’re trying to figure out what’s going on it might hold a clue.

I’m going for get a disc of my records from Cedars for Dr. Butte, it will be somewhere in those pages, but I’ll try and get just those results to send you as well.

Thanks again for everything.

Warmly,

Tara

(Noah is still very sick with his cold, it’s now been a week. He didn’t take his eye drops for a few days and his eyes are very glassy red again, so he jumped back on them today. Even though most of what he’s fighting is a virus, whatever is infecting eye is definitely bacterial.)

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