PURPLE?? (part 6)

Angiogram with contrast 

08:00

Angiogram. First thought they wanted to draw more blood (these people must be vampires!), but no, it is an eye scan with a dye for contrast to visualize the arteries.  Not the elusive gadolinium this time, but a bright purple substance.  

Puerta 8 for the preparation. The engineer about now knows how this goes, first the machine to measure your eye, and make you read the letters. He asked for the eye drop himself, to avoid them thinking of this after half an hour, administering the drop, and having to wait yet another half an hour, giving them the chance to lose track.

The angiogram machine. Needle inserted into the engineer. A vial with purple stuff on the table.

"Is fluorescente?"
"Si!"

"Will make your pee bright yellow for a day (ha ha ha)"

Hm.

Look into the lens. Right, up, down, left, far left, a bit up, a bt down etc.

100 flashes later, all done. Lights on. Everything is purple! Nice.

We leave the needle in, in case the doctor wants another scan, with a different color (yellow).

The engineer almost asked if that will make you pee purple, but he held that back.

About 12:00 now. Engineer de Waal went for a box of cookies.

Busy day. The doctor could be seen whizzing about, and was sitting in her office while foraging for cookies.  

"I am awaiting the MRI results, expect them... soon"

The word "patient" obviously has something to do with the word "patience".

By 14:00, doctor appeared.

"X-ray all good"
"Serologia all negative"
"MRI all good"

"You have sinusitis on the right, does that not hurt?"

"no?"

"We will give you an appointment with the Otorringología for that"

"Continue with the antibiotics, come back in two weeks"

Unique!

Gave her two articles the engineer encountered while reseaching lyme and optic neuritis. Apparently oftalmologists are not usually aware that Lyme can cause Optic Neuritis. 

1. Unusual Presentation of Unilateral Isolated Probable Lyme Optic Neuritis

"Lyme ON is an exceedingly rare ocular manifestation of Lyme disease (LD) and only a few cases have been published in the literature. Lyme ON is very rare but should be included in the differential diagnosis in unexplained cases, particularly in Lyme endemic areas."

2. A Rare Cause of Optic Neuropathy:

"The diagnosis of Lyme disease requires a high level of suspicion and only a minority of patients recall tick bites or cutaneous lesions."

"Although only a few cases of optic neuritis caused by Borreliosis have been described, Kubová et al. showed that, in patients with confirmed neuroborreliosis, 42% reported blurred vision or diplopia and 27% had delayed visual evoked potentials, meaning that optic nerve involvement in Lyme disease is probably more common than previously thought"

That engineer Jansen is quite unique is not news, but he must be an interesting casus, as they have an eye scan of him from March this year, and a quick Lyme suspicion after less than 6 months since that scan.  Maybe she can write an article!

(NB that is quick Lyme, not quick lime)

What next

Hopefully a few quiet weeks, and an improvement of vision.

In two weeks the course of antibiotics runs out, and the next appointment is due. Also for the sinusitis with the Otorringología. If they decide to treat that sinusitis they may use an antibiotic that is also often used as the followup second course of antibiotics for Lyme: amoxicillin

PS

Yellow pee? That, is, an, understatement.

PPS

Strange the Nobel prize committee has not yet phoned.

GADOLINIUM??? (part 5)

It's a good thing we dropped by Radiología on Friday for information on how and what, because the MRI is at 12:30, but you can not have breakfast. Or, nothing after 08:00. The clever engineer prepared a muesli breakfast the night before, set his alarm to 06:00, and survived that part of the ordeal.

Gadolinium

They make you sign a waiver, especially for the contrast dye. "Gadolinium" it said in the papers. Gadolinium? That's a rare earth metal. What..? 

Apparently gadolinium is the most paramagnetic substance on Earth, and is used as a contrast dye in MRI imaging. 

Still, eh.. gadolinium? Wiki has this to say:

"Gadolinium(III) ions in water-soluble salts are highly toxic to mammals."

ow. The engineer definitely IS a mammal, despite everything.

“However, chelated gadolinium(III) compounds prevent the gadolinium(III) from being exposed to the organism, and the majority is excreted by healthy^[9] kidneys before it can deposit in tissues. Because of its paramagnetic properties, solutions of chelated organicgadolinium complexes are used as intravenously administered gadolinium-based MRI contrast agents in medical magnetic resonance imaging.”

That's all good, then.

Wait what is this “majority” that is excreted?? What about the rest?

MRI

The RM (Resonancia Magnetica) is located in the cellar, down 1 floor, very atmospheric dungeon.

The waiver I had received apparently has a list of questions, but was printed so small that it was not legible for the engineer's current state of his eyes. Nor for the other engineer's state of his eyes. It's a list about metal in your body, and if you work in a metal workshop, if you have piercings, pacemakers, implants, etc. No, and his piercings the engineer already removed, as he's not that daft.

You have to undress, only keep your underpants on. The engineer had expected that and was prepared. And he had to wear a negligee. (ooh)

It's a huge machine, big vertical ring, with a plank that you have to lay down on. Bzzz! Into the machine, with a needle in his arm. No idea what they connected, or what the gadolinium looks like.  Fantasised about bright green, or purple.  Probably just colorless.

Cage over your head, a squeeze ball switch to alarm the technians in case you get unwell, pads next to your ears, to dampen the noise and fix your head in place.

"Can you say now and then how many more minutes?" (it was supposed to be sort of 20 minutes)

"Just relax"

Well and noise it makes. A whole symphony of sirens, clicks, sawing machines, drills, whooping sounds, drones, ... Some parts were like a bad house track, some parts were almost Kraftwerk.

The engineer just stared up at a text on the cage he could not read. What do you do, can you breathe normally? Can I move my eyes? Better not. There are two minute holes, with a prism, so you can see the ring of the machine, and the technicians walking by. Not much for them to do, but watch engineer Jansen.

And engineer Jansen just stared up. The arm with the needle started to get stiff. Aha, they are administering the contrast now, apparently. 

On and on... drone, click, BZZ...

Started counting the "sweeps"

Lost count.

"This must be another 5 minutes"

"Or 2?"

“15?"

And how many times have I thought that?

Lost count.

Aargh, a beginning itch. Ignore ignore ignore!

They could have sedated the engineer, if the engineer was not such an adversary towards sedation.

How long is a minute, actually?

Well, inside an MRI machine time is different.

Just concentrate on staring up, and breathing slowly. 

I dared flex one finger of the hurting arm, making sure the head stayed still.

..

"Ready!"

The noise stopped and plank rolled out of the machine.

"Careful, you may feel slightly dizzy"

Slightly dizzy was a bit of an understatement, they needed to support the engineer walking back to the changing closet.

Let's ask dr. Google (Ad Interim) for an explanation:

Even read somewhere that the better your vestibular system is, the dizzier you are. 
The engineer has a very healthy vestibular system.

"You must drink lots of water to flush out the contrast"

"The results will be sent to your doctor in 2-3 days"

The engineer sat on the chair a few minutes before taking off the negligee (ooh!), and be taken home. 

Still dizzy.

And the machine time was not 20 minutes, but about an hour. Not one of the engineer’s finest ones.

Patientce (part 4)

Today (August 20, Wed)

Today we have another appointment at Oftalmologia, at 08:30. You must come in, before the appointment, at 08:00, no breakfast, to the Sala de Extraciones to give blood.” 

Sala de Extraciones

"I have an appointment..."

"Please enter your Salud Andalucia card in the machine"

Nothing.

"Nothing"

"I'll check"

The common denominator with all this is: waiting. 

The word "patience" obviously has something to do with the word "patient".

Ticket "MDY", Box 1.

6 or 7 vials blood. 

"Estoy vacio"

Oftalmologia

09:15 The whole circus, again: eye drops, the machine to measure field of vision, the machine to make a scan of the inside of your eye, the machine to make another scan of your eye, and the machine that goes "bzzz!". They have a lot of machines.

Three doctors.  Interesting case, obviously. 

Serologia: negativo.

All done, come back in two days.

Left home at 7:15, home by 15:00. These are long days.

Next (22 August, Friday)

08:30 

"ahh, mr. Jansen"

They already know me now.

Again, the circus with eye drops, machines, etc.

"Please go to planta 0 for a radiografia. To rule out TBC"

WE ARE BORG

RESISTANCE IS FUTILE

"Arriba!"

"Huh, what?"

I was supposed to step on the platform.

Bzz click

Bzz click

LIsto.

Up to planta 1 again.

All done, come back on Monday, no breakfast, for an MRI with contrast. 

And Tuesday for an angiogram, with contrast.

An MRI?? 

Contrast?? 

They want a scan of the whole head, plus a scan of the optic area. 

The engineer suspects two things:

- they want to see more of the optic nerve, and whether it is affected

- they want to rule out things like brain tumors

"Have a good weekend!"

The engineer researches optical nerve inflammation and optical discs, and finds Lyme (part 3)

Recap

- With an inflamed optical nerve you usually have a headache when moving your eyes, I did not;
- Inflamed optical disc: “unilateral presentation is extremely rare”. I have that.
- Inflamed optical nerves are often caused by things like MS. That is: people with MS often have an inflamed optical nerve. I’m too old to start having MS, I think. The target group is women 20-40 years old. The engineer definitely is not that. (See impressive hairy chest photo in blog before previous blog.)
- “Unilateral papilledema can suggest a disease in the eye itself”.  Well, Lyme quite possibly.

An “optical disc” is a good thing to have as an engineer, no? He was not aware.

Monday August 18, 09:00 Oftalmologia for revision(!) of the past days. And interesting days they were. Fortunately the same doctor as last Thursday, and not the “lady” we experienced in March (different story).

“How are you?”

“Regular” (that means: not great)

Explained the hiccups with the prednisolone treatment, wondered why 40 mg was administered and not 1 gram, and if they had discussed that with him (no), and that I may have determined the cause (Lyme), not a virus, asked for a blood test, taking another week, and that antibiotics treatment was started as a precaution. 

“Was it the doctor at Urgencias who determined that?”

“No, me. (sorry)”

“Please give me the papers and wait outside”

“And room 5 for eye scan”

“Please come in again”. Two doctors, I think the department head, as she seemed to have the bigger authority, and the bigger office. Both eyes were thoroughly examined again with bright light, prisms, lenses, and atropine, then they sat behind the screen to happily browse through the CT scan images, discussing in their jargon. 

Jansen Test

Then they giggled, haha, the Jansen test! There appears to be a test for Lyme that is called the Jansen test:

Verdict

Anyway. The verdict: “we see activity in the scans that is consistent with Lyme, protocol determines:”

- standard treatment 2x100 mg doxycycline per day for 4 weeks

- lumbar punction to determine how far the infection has gone, to see if the treatment can be shortened to two weeks

- if severe: intravenous antibiotics 

Well, the engineer is over 65 and is not into lumbar punctions in general, so he declined. 

“Are you ok with that”

“Half”

“Stop the other antibiotics” (4 pills of 20 down)

“3 weeks doxycycline 100 mg 2x day” (should be 4 for late disseminated Lyme)

“Two hours after meals”

“Temperature reading 3x day, you must write those down”

“Come back this Wednesday for further consult”

Back home

We were on the way home around 16:30, almost home at 17:00, still in the car. 

Phone. 

Huercal Overa. 

“You must come back for giving blood for analisis, today!”

“We just got home…”

At 17:45 we left for the hospital again, arriving 18:30. Consulta 8. 

“There is nothing in the computer”

After some phone calls I suggested to just draw some blood and see what you do with it later.

“Ok”

That took more than 3 hours, and not without pressure from engineer De Waal, who had had more than enough by then.

We were home at 22:00. Poor dogs, all alone, and without light. 

Sandwich, to have before first pill, temperature readings for the report. 

Luckily the engineer had bought a new 7€ electronic thermometer (not the expensive 34€ infrared gadget), because the battery of the old trusted Philips thermometer ran out the next day. The Philips has a digit more after the decimal point, the engineer likes that. 

Tomorrow

Tomorrow we have another appointment at Oftalmologia, at 08:30. While typing this: call from Huercal Overa: “we don’t have sufficient blood from you. You must come in tomorrow, before the appointment, at 08:00, no breakfast, to the Sala de Extracciones to give blood.” 

Engineer De Waal almost exploded, engineer Jansen had a laugh.

🙄

PS

The engineer’s decision to skip that 1 gram prednisolone treatment and leave was correct, as is his Lyme self diagnosis, and everything else, in fact. (Can the engineer please have the telephone number of the Norwegian Minister for Health?)

PPS

What’s this about no breakfast then?!

Detective Eminent Doctor Engineer Jansen-Watson (part 2)

Well, today for 3rd and last dosis prenisolone.  While in the car on the way the engineer was pondering his latest blog entry, and wondered again about why they administered 40 mg prednisolone as an injection in the bum, and not 1 gram intravenously.

Also he remembered the phone conversation the doctor had with the neurologist, after the CT scan.

"No headaches?"
"No" 

I could sense their suprise.

The engineer researches optical nerve inflammation and optical discs, and finds Lyme

Reading up on optical nerve inflammation and optical discs:

The oftalmologist suspected: inflamed optical nerve, or Optic Neuritis, and prescribed the 3 days of 1 g prednisolone per day, intravenously. That is a wellknown treatment, to preserve the optical nerve prior to treating the cause.

After the CT scan the "efermedad actual" is: Papiledema, swelling of the optical disc (very typical for an engineer to have, an optic disc), which has a different course of treatment. 

Let's ask dr. Google AI, I guess that is dr. Google Ad Interim? Must be him (or her):

This suggests that 1 gram for papiledema is NOT the required treatment.

- With an inflamed optical nerve you usually have a headache when moving your eyes, I did not;

- Inflamed optical disc: “unilateral presentation is extremely rare”. I have that.

- Inflamed optical nerves are often caused by things like MS. That is: people with MS often have an inflamed optical nerve. I’m too old to start having MS, I think. The target group is women 20-40 years old. The engineer definitely is not that. (See impressive hairy chest photo in previous blog.)

- “Unilateral papilledema can suggest a disease in the eye itself”. 

Well, Lyme quite possibly.

Elementary dr. Watson

What (possibly) happened: 

- The "enfermedad actual" now is not neuritis optica but papiledema. 

- I think they established that after the CT scan, in that phone conversation with the neurologist.

- They decided to give 40 mg prednisolone in the bum.

- The paper still had 1 gram prednisolone per day, as prescribed by the oftalmologist.

- But, the oftalmologist was never informed of the new "enfermedad actual'.

- The day after the CT scan, first day 1 gram treatment was a holiday, so oftalmologia was closed, and they did not communicate about engineer Jansen

- And so they never changed or deleted the 1 gram per day.

- They blindly follow what is on the paper.

- Every step has another person, and they make mistakes because they don't think.

- Luckily Engineer Jansen still has a brain.

So there was dr. engineer Jansen in the chair awaiting the needle, but asked if he could discuss.

Doctor came, another one. (They have a lot of doctors here.) 

"My enfermedad actual is papiledema, not neuritis optica"

"But the oftalmologist says"

"But after the CT scan it says papiledema, and 1 gram is not for papiledema"

"But the oftalmologist says"

“I think they did not tell the oftalmologist”

"And why else did they change to 40 mg after the CT scan?"

"I don't know. Did you not talk to the oftalmologist after?"

"No, but I have another appointment there tomorrow. We were supposed to see him Friday, but they were closed for Maria Ascension Day"

"Dr. Google Ad Interim says: 1 gram is not for papiledema"

"But the oftalmologist.."

"1 gram is a very heavy treatment, can we skip a day and see tomorrow?"

"Yes that is possible"

"Is skipping a day problematic?"

"3 days consecutive is standard"

"But will it harm to skip a day?" 

"I dont think so"

"I'll skip treatment today and talk to oftalmologist tomorrow"

"OK" 

And what does she write on the Informe de Alta (release form):

"Patiente acude para continuar con tratamiento de prednisolona 1 gram (era dosis)  refere que no quiere poneria hasta hablar con oftalmologia porque no considera tener edema papilloma"

or:

"Patient comes to continue treatment with 1 gram of prednisolone (was the dose) and says he does not want to put it until he speaks with an ophthalmologist because he does not consider having papilloma edema."

She has swapped the enfermedades.

I don't have neuritis optica, I do have edema, and I don't need 1 gram for that.

I'm apalled. I understand now how medical mistakes come to be.

Tomorrow the oftalmologist.

If they would not have been closed Friday we would have spoken with the oftalmologist, and he probably would have cancelled the 1 gram treatment.  Now that has cost me two 1 gram sessions!

Doctor Engineer Jansen (part 1)

Now engineer De Waal has fully recovered it’s engineer Jansen’s turn for the medical mill. Eye trouble. Left eye has a sudden darker area in the left corner, and weird light sensitivity in strong light, like the sky. As if you have looked into the sun, or a strong lamp. The engineer normally avoids such behaviors, so this is strange.

After a few days: lets go to Urgencias at the hospital. Passed on to Oftalmologia after an hour and a half. An hour later first consult, eye drops and eye sharpness machine. An hour after that consult: sent off to the lab for an eye scan. Ah, your optic disc is swollen, can be your optical nerve is inflamed. Off to the waiting room downstairs, for a CT scan of the skull, to make sure there is no tumor in your brain causing this. Not a settling message. New appointment armband.

The scan turned out fine. 

Anyway, the oftalmologist called for the treatment for acute neuritis optica: 3 days intravenous: 1 gram prednisolone.

That is a very heavy treatment that they are not used to. After the scan result they sent me back for a new appointment to oftalmologia.

Wait, the prednisolone. Oh yes. We’ll get you a pincha (injection). Not via intravenosa? Nono, pincha. Mas facil. Pants down, injection in the bum, off to home. 17:00, been here since 09:00. Hambre! (Hungry)

Next day

Next day, Friday 14 August. Oftalmologia. Closed, as it’s a holiday. (Maria Ascencion). Hm. Ok, then Urgencias. 

“I need a pincha prednisolone”

“No, 1 gram prednisolone is not possible in a pincha”

“What did they give me yesterday, then”

“We’ll find out”

Sala de Sillones, day 1

Off to the “sala de sillones”. A room with 10 sort of comfy chairs where they administer intravenous drips. Enigneer de Waal was here too, 2 months ago, before they sent him upstairs in his negligé for his gallbladder operation. 

Needle inserted in hand, nice. A big injection arrived. Whats that? Urbason. Is prednisolone. Ok. Odd, that’s not an IV drip. 

"Ok, all done, you can go home."

"Ehm, but the IV drip?"

"Nono, that was it."

"Eh, was that 1 gram?" 

"Ehhhh.. no, 100 mg."

"Nonono!"

A proper dose arrived, 900 mg was taken from an ampoule, injected in 500 ml salty water, and connected to the engineer, using a pump to spread the time to two hours.

"Two hours"

"Yes, to make you not die of shock"

"ok"

Engineer De Waal went home to feed the dogs. Whatsapp is nice to maintain contact on progress etc, unless your 2 years ago Apple replaced iPhone SE battery is bad again, and dies on you while there. 80% to 13% to 1% to …. blast!

Anyway, 500 grams more heavy the engineer was discharged, with a paper properly describing the next two days’ appointments.

Pump

Looks like a car?

The engineer researches optical nerve inflammation and optical discs, and finds Lyme

Back home, reading up on optical nerve inflammation and optical discs.

With an inflamed optical nerve you usually have a headache, I did not. 

Inflamed optical disc: “unilateral presentation is extremely rare”, but I have that.

Inflamed optical nerves are often caused by things like MS. That is: people with MS often have an inflamed optical nerve.

“Unilateral papilledema can suggest a disease in the eye itself”

One of the causes that caught the engineer’s good eye: Lyme Disease.

Curiously, May 13 the engineer had been mowing grass in Antas, and when changing clothes noticed two red rings that looked like a tick bite, close to eachother. Even took a photo.

Engineer Jansen's (impressive) hairy chest

Lyme has a few stages. 

Stage 1: Week 1: red rings that disappear within a week, and possibly a flu-like ilness, and or fever.  (Not me)

Stage 2:  Week 2-10: possible neurological problems, and eye tissue inflammation. Bingo! May 13 to now is 3 months , is 12 weeks.

Sala de Sillones, day 2

After take-in we were sent to the waiting room, and nothing happened for an hour. 

“Have you forgotten me?”

“ah, there he is”

“Is there a consult with a doctor prior to the drip?”

“I’m the doctor”

“Oh, good!“

“I may have Lyme disease”

Showed picture of the rings. 

“Did you have a fever?”. 

“No, but that does not always happen!"

"Could we do a blood test maybe?”

He was off to discuss.

“yes”

Needle inserted, elbow cavity this time, the hand yesterday has a nice blue bruise.

Commotion again about the 1 gram prednisolone. Do we have enough? Yes! No! Aaargh!

Pump and drip arrived, 3 hours. 

The IV connection has a 3-way valve. Very handy, they can turn it so they can extract blood. 3 vials. For the lab tests.

Lyme test takes 7 days. 

Doctor engineer Jansen

“Hmm.  Maybe, as a precaution, give me antibiotics?”

He was off to discuss.

Came back with a 10 day course of Cefuroxime, 2 x 500 mg per day. As dr. Wiki orders for early detected lyme. Late detected lyme requires 14-28 days, but that can always be done when the test results arrive, hopefully in 7 days.

2 hours later, iPhone battery died, but not before the chauffeur was informed of the end time of the treatment.

Off to the famacia for the pills, €1,90 please. Apparently you pay 10% of the actual price. Good!

All info on prescriptions is in the Andalucia Salud plastic card. Well done.

That was a well spent day. If this antibiotics treatment indeed works the engineer will add the “doctor” title to his name, and apply for the Nobel Prize in Medical Engineering.

Sala de Silones, day 3

That is today. Will report, if surviving.

Oh, ordered an iFixit battery replacement kit. €40. Not spending €1000 on a new iPhone, so Tim Apple can shove more gold up the orange troll extortionist in chief.