ON and off (part 11)

Vision goes down and up a little, just to be sure the inflammation in the eye has not returned: back to Urgencias 🙄.  

This time a doctor at urgencias who seems to be more experienced with eyes, she looked into the eye herself, and said there was no inflammation, and she would call Oftalmologia. She spoke with one of them, and said: you have chronic optic neuritis, you are on Nurane, capsules with ginkgo leaf extract + magnesium, which has vasodilatory properties to stimulate nerve repair, it is well possible what you experience is due to Nurane. There will be good and there will be worse days. 

Well, the good news is that there is no inflammation, but the "chronic" bit is really not good news.  New appointment with Oftalmologia for revision, OCT scan and field of vision. The OCT scan shows that indeed part of the optic nerve is no longer functioning. This means 40% of vision in the left eye has gone, and won't come back. General vision is still ok, as the missing bits are missing, they are not colored or flashing, and missing bits are filled in from the right eye. However, at the moment this condition is tiring, as it sort of feels like you have new glasses with a strong reading part.  And, reading with only the left eye is not possible any more.

Read a fellow patient idea: close your eyes, and sit in the sun. It helped her. Who knows.

(ON stands for Optic Neuritis.)  

Engineer Jansen calculates drips and avoids mansplaining (part 10)

The (precautional) second course of antibiotics now runs almost 1.5 weeks, so 5.5 weeks antibiotics in total, 1.5 weeks still to go. Last week another round of blood was extracted from the engineer, to see if Borrelia (Lyme) can now be detected (no), and to see if IGM toxoplasmosis is positive, meaning an active infection with that (no). Good.

The past few days engineer noticed a slight degradation in vision in the left eye, like there was a slight mist, so back to Urgencias, again. Passing on to Oftalmología did not take long. Fortunately the doctor that knows the whole history. Off to puerta 5 for CV test (campo visual, field of vision). The engineer thought the upper half of his eye sight had degraded, the doctor saw in the results that the lower half had deteriorated.

Thinking about that, the engineer thinks that both she and he are correct. The whole field of vision has slightly deteriorated, meaning the lower half indeed got worse. But the upper half too. Only, the machine does not detect that because the engineer could still see those small light flashes through the mist.

[Field of Vision test: the inside of a 40 cm white hollow half globe is in front of your eye, then randomly displays tiny white flashes in random places on the inside surface, and you must press a button when you see the flash. So they know if parts of your vision are missing.]

Anyway. Look into the eyes: we see no inflammation activity (good!). That was a relief, because one of the engineers’ worries was that the inflammation was back. That can happen if it’s not Lyme after all, but something else, like an autoimmune thing, a fungus, …  

So far the cause is undetermined. Lyme, toxoplasmosis, rick-ettsia (ha ha ha) all negative, according to last week’s serologia. That is good too. (Lyme and rickettsia both are tick borne diseases.) A negative lyme test does not mean much, nor does it when positive, as they are insensitive and indecisive.]

Losing one eye is bad enough, the other eye may not go down that path (please), that would be catastrophic, hence this repeated visit to Oftalmologia via Urgencias. 

Verdict

“No inflammation, but we are going to give you 3 days of prednisolone intravenous 1 gram per day to try and speed up recovery” (Big single or a few doses of prednison or antibiotics are called “pulse treatment”)

“Come back in 10 days for revision, with OCT and CV” (an eye scan and field of vision)

Mansplaining in the Sala de Sillones 

Off to Urgencias, and the Sala de Sillones again, for the IV drip.

This time no pump, just an intravenous 500 ml bottle, with 1 gram written on it. Good. 

“No pump?”

“No”

“How long will it take?” (So engineer De Waal can plan his trip home and back)

“1.5 to 2 hours”

Drip

Drip

Drip

Engineer Jansen wondered after about 45 minutes that not much had been dripped into him. The first marker was reached, indicating that 100 ml had been used. Even though the bottle is sucked a bit hollow-ish. Hm. Remembering (chemistry lessons, titration) that one drop is about 0.05 ml he started counting and timing. 10 drops in 15 seconds. So, 40 in a minute, which is 40 x 0.05 = 2 ml per minute. 500 : 2 = 250 minutes, is 4 hours+. Hmpf.

Not wanting to be the mansplainer in the Sala, the engineer wondered what to do. 

As innocently and casually as he could manage, he asked the nurse, when she was near, how much time left?

“Are you in a hurry?”

“No, but it’s for the planning the return trip, else they have to wait a long time outside”

“1.5 to 2 hours left”

That is not the correct answer.

Certainly not after 45 minutes.

Asked the male nurse when the female nurse was away.

“I have no idea”

That is an honest answer, though meaningless.

Drip 

Drip

The engineer tried again. 

“This will take more than 3 hours still”

“Hmm”

“We can set it quicker”

She turned up the speed a bit, but that would still take 2 hours more, from this moment.

Half an hour later: Up! to 33 drops per 15 seconds, 132 per minute, is 6.6 ml per minute, meaning 25 minutes more.

That was the correct answer.

All in all the session took 2 hours 45 minutes. Without the engineer interfering (again!) it would have been 4 hours 10 minutes.

How can these people have no idea how long a drip takes? They do this every day!

PS

According to dr. Google Ad Interim, prednison and doxycycline do not interfere. Good.

The engineer quite agreed with himself.

PPS

They still have not called!

3 More Weeks (part 9)

Revision. Appointment at 12:40. We were there 2 hours before. Normally you are attended to sooner, but today is very busy. First a look with just the doctor headgear. Pupil widening drop, and another hour waiting for the drop to work. 

“Jansen”

Another man stood up and entered the room. Huh?

Engineer Jansen followed him and expressed surprise.

“Sanchez, not Jansen”

Ah. Sorry.

Patience.

Time passes.

More time passes.

“Jansen”

“Not Sanchez?”

“No”

More looking into the eyes. Up, down, left, right, etc etc

“Disc is much paler, inflammation is down.”

“We will stop treatment, as we see no more activity”

3 More Weeks

Engineer Jansen expected that attitude, and came prepared. His big goal for today was: obtaining the extra 3 weeks of antibiotics, as with the article patient. The article “Unusual presentation” has a quite similar patient, who gets 6 weeks of doxycycline in total, sees some improvement after 3 weeks, and more improvement after 6 weeks. Yet another article has a patient with 12 weeks antibiotics. 

Standard protocol in Spain is 2 weeks when Lyme is detected early, 4 weeks if later and the blood test detects Lyme.  The Lyme blood tests however, are very insensitive. Literature describes so many cases with negative tests, also with negative lumbar punctions (“spinal taps”). So far engineer Jansen’s Jansen tests were all negative.

The engineer now has had 3 weeks of doxycycline, and after that sneaked in the remaining 8 days of Cefuroxime that he got the very first day in Urgencias, so he was under treatment every day since, with just one day of that Cefuroxime remaining today. So, 4 weeks in total, though without visual improvement. 

“I really think it’s not necessary”

“I understand that completely, but borrelia/Lyme really is a nasty bacteria, it can hide and come back..”

“I lost one eye, that is quite a disaster, losing another eye would be a catastrophy.”

“3 more weeks of antibiotics probably will not kill me, but losing another eye would be, a catastrophy”

“We could do vitamins..”

The engineer looked really unhappy.

“This article…, they do 6 weeks, the other article 28 days IV Ceftraxione”

She gave in, even though she disgreed.

3 more weeks.

I wonder if they see many patients that interfere with their treatment like this.

(Sorry!)

Tomorrow Centro Salud in home village for extracting blood for the serologia tests. 

Together with engineer De Waal, for his followup blood tests.

Yes, toxoplasmosis IgG and IgM are both listed. Jolly!

Status

4 weeks in, the bad news is that there currently is substantial vision loss in one eye, the good news is that the inflammation has stopped.  Now hoping that vision improves in weeks or months to come, as with the article patients. 

Currently it means that more than 50% of the left eye's vision is blurred or gray. Reading with the left eye is no longer possible. Total vision still is more or less ok, as the missing bits are missing, don't have a color, and are not interfering. They're simply not there. The total image still is reasonably ok.  It’s not great, but I may have to accept it. It’s life. It could have been worse.

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, Cefuroxime)

“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?!

*) if you understand this reference you have won A BIG PRIZE! A VERY BIGLY PRIZE!

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. (Many people witn affected optical nerves experience pain when moving their eyes.)

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, because the optical nerve may not be affected.
• They decided to give 40 mg prednisolone in the bum.
• The paper still had 1 gram prednisolone per day, as prescribed by the ophthalmologist
• But, the ophthalmologist 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
• It now is the weekend, so no ophthalmologist around to discuss.
• 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 ophthalmologist says"

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

"But the ophthalmologist says"

“I think they did not tell the ophthalmologist”

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

"I don't know. Did you not talk to the ophthalmologist 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 ophthalmologist.."

"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 ophthalmologist 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 ophthalmologist.

If they would not have been closed Friday we would have spoken with the ophthalmologist, 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 ophthalmologist 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 15 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, 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.