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In Belgium to see Dr de Meirleir

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
That's exactly what i've been feeling for months but it has subsided with excercise.
I have RBTB.

I'm guessing RBTB doesn't stand for "Rob Beadle Triangle Band." That was the first english hit on google.:)

However I also came across this: Rechterbundeltakblok - ECG-clopedia. Seeing as it end in "blok" I'm thinking heart block. Is this correct?

Mine started acting up about 5 years ago and has slowly progressed. It's certainly worse with oxidative stress, and far worse with borrelia die-off. So I'm thinking my original guess of Lyme carditis might actually be right.
 
Messages
233
Thanks for posting your tests and progress, Valentijn. I am glad your cognitive function has gotten better after some of the treatment so far. It feels like such a victory.
 

Folk

Senior Member
Messages
217
Call the scepticism 'healthy cynicism' and I think it may be a good combination. Desperation with nothing to add a little caution can be a very bad thing.

Yeah, funnily enough desperation without skepticism is probably gentler on the individual but might be a even worse combination in terms of results.

Just should be a way to know if the doctor isn't a psychopat
 

Valentijn

Senior Member
Messages
15,786
I've now been off antibiotics for two weeks while waiting for the pharmacy to get the Tetralysal. I'm still doing much better than usual.

Basically I can handle a lot more easy physical activities throughout the day, without any repercussions. I am still resting between activities however - I'm being careful! Going up and down the stairs has become a lot easier, and my heart rate is still recovering very quickly during and after sit-down showers.

Prior activities like making coffee are now easier and a lot less painful. Usually I get intense back and leg pain when making coffee or unloading the top tray of the dishwasher, especially if I had to lean a bit to the side while doing it. Now there's little or no pain, and I can keep doing those for a lot longer.

I've also reintroduced some activities I haven't done for months or years:
  • emptying all of the dishwasher, not just the top row
  • folding my laundry
  • retrieving the trash bin
  • washing laundry
  • cleaning the coffee machine
  • yard work while bending over
And so far it's all going well! I hope to give dusting a try tomorrow :D
 

Folk

Senior Member
Messages
217
Hey @Valentijn that's amazing... I'm glad you improved. When it's a constant like this, it surely is there to stay.

Do you think you're done with the herxing??

Did Dr. De Meirleir told you what will be the next steps??
 

Valentijn

Senior Member
Messages
15,786
Do you think you're done with the herxing??

Did Dr. De Meirleir told you what will be the next steps??
Nope, I was still herxing on the antibiotics. I should be on them now, but the pharmacy is taking a while :p So for now, the plan is more antibiotics.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Wow - that's wonderful @Valentijn

Emptying the dishwasher top and bottom! Folding and now on to try dusting. All very important activities to test how the body is coping.

These are all things that really bring out my POTs and then the PEM.

I'm guessing that it is maybe your heart that is stronger (or something that regulates your HR)?
 

Valentijn

Senior Member
Messages
15,786
So I finally started on the Lymecycline and Azithromycin, about 10 days ago. It took a while to import the Lymecycline, which is pretty funny considering it's manufactured in this country! The Dutch medical system has some serious dysfunction when it comes to the variety of meds available here.

Anyhow, I'm getting less hypotension now, but mild headaches usually a few times per week. That's also a Herxheimer symptoms, but also might just be a neurological side effect. I had a pretty strong side effect from Doxycycline as well previously, which is in the same family of antibiotics. The doxycycline gave me intense vertigo, so I'm pretty happy with mild headaches a few days per week instead. I also get some feverish periods, but again it seems milder. And a little flushing a few times.

So I'm not really sure if I'm still herxing or if I've killed of the Lyme as thoroughly as these classes of antibiotics can, or if they aren't as effective as the last antibiotics I was taking. I guess I'll just see how it goes over the next 6 weeks :rolleyes:

I'm still on 4ME and hydroxoB12 injections, and Creon digestive enzymes. But VSL#3 wasn't available, apparently due to production issues, so I'm on Bififlor Fos Forte instead as a probiotic. I'm not as happy with it, and need to take it twice per day, which is difficult to arrange around taking antibiotics three times per day and eating three times per day :p

I also got my basic blood labs back, and generally it looks pretty good. Total white blood cells are down slightly, which is good because they were at the very high end of the normal range last time. My ALT is a bit elevated at 46 (normal 0-33), but other liver enzymes are well still within range, though they are steadily rising a bit over the past 7 months. I'll definitely ask to get it checked again next time though - it's good to keep a close eye on it when it's been a bit high.
 

RML

Senior Member
Messages
403
Hi @Valentijn ,

Glad you finally got your new oral abx sorted and started. Hopefully, the less herxing is a good sign!

About the VSL alternative, did you choose that one yourself or did KDM prescribe it since VSL isn't available lately?

Just curious, I have been out of VSL since the week before Xmas, I tried to buy it then at Brussels airport and was told not in til January, I mentioned this at my consult to KDM, he mentioned a re-branding or something and also said early January would be available again. Well, I've tried mid January, then told late Jan, tried then again, told early Feb would definitely be back, so again tried first week of Feb, no luck either and no answer on time frame now. I have not tried since. but kept meaning to go to pharmacy across the road every day this week, but far too wrecked.

I am pretty anxious to get it again, cos last 2 weeks my gut has gone haywire again, massively bloated, after nearly 6 months on VSL and having it near sorted or so much better at least.

Perhaps it is because I started the Plaquenil in last few weeks and it is not agreeing with me.

I have tried picking alternative probiotics myself but having no effect so far. i have not heard of that Bififlor Fos forte though, but then you are not happy with it, perhaps it will be like the other 4 alternatives I've tried.
 

Valentijn

Senior Member
Messages
15,786
About the VSL alternative, did you choose that one yourself or did KDM prescribe it since VSL isn't available lately?
I think the clinic recommended it twice per day as an alternative to VSL. I'm not completely sure, since my Dutch fiance had to handle most of the communications due to our pharmacists not speaking English.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
@RML and @Valentijn , super-8 from Udo's Choice is also recommended if VSL #3 is not available.
http://www.iherb.com/flora-udo-s-choice-super-8-hi-potency-probiotic-30-capsules/3060

It's also available in Dutch stores.

Minimum 42 billion viable cells per capsule. Unfortunately the bacterial count is a lot less than VSL #3.

Lactobacillus acidophilus HA-122 45%**
Lactobacillus rhamnosus HA-111 25%**
Lactobacillus rhamnosus HA-114 10%**
Lactobacillus plantarum HA-119 7%**
Bifidobacterium bifidum HA-132 6%**
Lactobacillus casei HA-108 3%**
Bifidobacterium longum HA-135 3%**
Lactobacillus salivarius HA-118 1%**