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. Eye 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. 

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 lumbar punctions (“spinal taps”).

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. 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. 

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?!