In Belgium to see Dr de Meirleir
- Thread starter Valentijn
- Start date
I think this is week 15 of oral antibiotics. I haven't had any fevers for a while, though seem to still have bouts of daily hypotension. I'd been visiting family in the US for a few weeks, so hadn't been checking since I didn't have my blood pressure monitor. But now I'm home, with a lot less social requirements, and should probably get back to testing that before my next doctor visit in a week or two.
Everything went very well on vacation, regarding meds. I had no problem taking the 4ME and B12 onto the airplane as a carryon. I had the boxes in a rigid clear plastic box, with the letter from my doctor which described my treatments. We kept my digestive enzymes with my fiance's insulin, in a cold-pack, and that also did fine during the trip.
It was pretty nice getting home-cooked food every day, aside from just a few trips to restaurants which were mostly while staying at a hotel in downtown Seattle for a couple days of shopping. I barely even needed my enzymes, since we were eating very safe foods most of the time. I wish they had a soy-free egg-free mayonnaise in the Netherlands - I'm going to miss that!
It was also great not having to walk up or down stairs at all, since my parents' house has an elevator installed by the previous owners for medical reasons. We also figured out how to get parked near an elevator while taking the 65-90 minute ferry trip to and from the island they live on. Basically we just let them know we need to park near an elevator while paying for the ticket or getting directed to a lane, and we ended up in a special lane or parked off to the side. Then when the ferry loaded, the loader would signal us when it was time to get on, and have us turn our flashers on so that the loaders on the ship knew that we need elevator access.
So we'd then get parked right in front of the ship's elevator, usually along with two or three other cars. No handicapped permit or anything was needed. Anyhow, it's great being able to get to the elevators very easily, especially in the middle of winter for a long ride - it's not fun being stuck in the car! Though that did happen once when the elevator was out of service, so they parked us near the bathroom on the bottom car deck instead. Of course, one of the other disabled cars parked right in front of it and blocked wheelchair access, but luckily no one needed that. Though the door was seriously stuck and required tackling it to get it open and closed - not nice for frail handicapped, and impossible to keep it warm, since the door was open a few inches most of the time. So I froze my butt off for an hour in the car. But at least the view was nice
Everything went very well on vacation, regarding meds. I had no problem taking the 4ME and B12 onto the airplane as a carryon. I had the boxes in a rigid clear plastic box, with the letter from my doctor which described my treatments. We kept my digestive enzymes with my fiance's insulin, in a cold-pack, and that also did fine during the trip.
It was pretty nice getting home-cooked food every day, aside from just a few trips to restaurants which were mostly while staying at a hotel in downtown Seattle for a couple days of shopping. I barely even needed my enzymes, since we were eating very safe foods most of the time. I wish they had a soy-free egg-free mayonnaise in the Netherlands - I'm going to miss that!
It was also great not having to walk up or down stairs at all, since my parents' house has an elevator installed by the previous owners for medical reasons. We also figured out how to get parked near an elevator while taking the 65-90 minute ferry trip to and from the island they live on. Basically we just let them know we need to park near an elevator while paying for the ticket or getting directed to a lane, and we ended up in a special lane or parked off to the side. Then when the ferry loaded, the loader would signal us when it was time to get on, and have us turn our flashers on so that the loaders on the ship knew that we need elevator access.
So we'd then get parked right in front of the ship's elevator, usually along with two or three other cars. No handicapped permit or anything was needed. Anyhow, it's great being able to get to the elevators very easily, especially in the middle of winter for a long ride - it's not fun being stuck in the car! Though that did happen once when the elevator was out of service, so they parked us near the bathroom on the bottom car deck instead. Of course, one of the other disabled cars parked right in front of it and blocked wheelchair access, but luckily no one needed that. Though the door was seriously stuck and required tackling it to get it open and closed - not nice for frail handicapped, and impossible to keep it warm, since the door was open a few inches most of the time. So I froze my butt off for an hour in the car. But at least the view was nice
Happy to hear that you managed the trip so well!
More specifically ( @justy ), only if you would like to share, would you say that you have or haven´t had improvements from all the treatment so far? Is you activity level better e.g.? Are you able to walk better- longer?
More specifically (
@justy ), only if you would like to share, would you say that you have or haven´t had improvements from all the treatment so far? Is you activity level better e.g.? Are you able to walk better- longer?It seems like I'm not crashing now, or crashing much more mildly, even after fairly intense activities by my standards. I still get wiped out, but it seems to pass after a few hours.
No idea regarding walking. It's not something I make a point of doing, since I need to focus on basic living activities instead. But yes, definitely some improvements.More specifically (
I took a shower today before taking my 2nd antibiotic, and it went pretty well, even though I was totally wiped out from not sleeping well last night due to jet lag.
Most interesting was that while my heart rate would still get high (100-110) after a minute or so of washing myself, it only took 10-15 seconds to drop to 85-90 after pausing to rest. Usually it would take at least a couple minutes. It was pretty weird to see it drop so very fast.
So I do seem to be recovering much faster from at least some activities. Though my OI does still seem to get a bit nasty after taking the clarithromycin in the afternoon and evening, presumably due to the Herxheimer reaction.
Most interesting was that while my heart rate would still get high (100-110) after a minute or so of washing myself, it only took 10-15 seconds to drop to 85-90 after pausing to rest. Usually it would take at least a couple minutes. It was pretty weird to see it drop so very fast.
So I do seem to be recovering much faster from at least some activities. Though my OI does still seem to get a bit nasty after taking the clarithromycin in the afternoon and evening, presumably due to the Herxheimer reaction.
Do you know why KDM prescribes Choline? I got it too but haven´t had the chance to ask him yet.
So I had another appointment a week ago. I was still reacting to the antibiotics (typical Herxheimer), so I'm on antibiotics for another two months. But Dr de Meirleir seemed a bit concerned that I'm still reacting, so more tests for co-infections are being run, and I'm prescribed oral Tetralysal (Lymecycline) and Azithromycin now. Labs for liver function and white blood cells are also being run, since those can become elevated when on antibiotics for a while.
Tetralysal is a tetrycycline like Doxycycline. And I've been on azithromycin before, albeit in IV form. So nothing too new. I'm also on Biofilm Defense, which is supposed to be a good biofilm destroyer. They've got a paper published regarding at it, though I haven't looked closely at it yet.
Tetralysal isn't available in the Netherlands, which seems to be pretty normal for drugs in this country The pharmacy asked if a similar dose of tetracycline is a suitable substitute for tetralysal, and the clinic initially said yes, but I think due to the question not being phrased very well. I looked at it when it arrived, and the dose was waaaay too low for tetracycline, so I emailed the clinic again asking for clarification, and they said that it isn't a suitable substitute, so we'll be asking the pharmacy to import the Tetralysal.
So more delays, but I can't say I really mind. It's been a very nice week off of antibiotics! I'm in better shape now than I was before I started antibiotics, so that's been enjoyable. Basically I'm cognitively doing MUCH better. I can stay focused on things all day, though I still struggle with making the "I really don't give a damn" type of decisions, and multi-step planning for doing something new. Even Dutch understanding went pretty well when family visited on Sunday, though I did get wiped out after a while.
My heart rate has been doing great. I took a shower today and only went over 100bpm a couple times. And it very quickly dropped again as soon as I stopped what I was doing and rested for a few seconds. I was even able to shave my legs for the first time in months!
It's been a while since I've had anything which I'd term as a crash. More commonly I get some OI hitting at the end of the day, or am just wiped out for a few hours after excessive activity. Much nicer!
Current labs being run:
Hemoglobine
Hematocrit + RBC
WBC
Thrombocytes
AST
ALS
GGT
Inflammatory cytokines
Perforin
Prostaglandin E2
D-lactate
Brucella
Midichloria Mitochondrii
Tularemia
Babesia FISH (new way to test for Babesia)
IgA/IgM of: Klebsiella pneumoniae, Pseudomonas aeruginosa, Citrobacter koseri, Pseudomonas putida, Morganella morganii, and Hafnia alvei.
So another 750 euros
Tetralysal is a tetrycycline like Doxycycline. And I've been on azithromycin before, albeit in IV form. So nothing too new. I'm also on Biofilm Defense, which is supposed to be a good biofilm destroyer. They've got a paper published regarding at it, though I haven't looked closely at it yet.
Tetralysal isn't available in the Netherlands, which seems to be pretty normal for drugs in this country
The pharmacy asked if a similar dose of tetracycline is a suitable substitute for tetralysal, and the clinic initially said yes, but I think due to the question not being phrased very well. I looked at it when it arrived, and the dose was waaaay too low for tetracycline, so I emailed the clinic again asking for clarification, and they said that it isn't a suitable substitute, so we'll be asking the pharmacy to import the Tetralysal.So more delays, but I can't say I really mind. It's been a very nice week off of antibiotics! I'm in better shape now than I was before I started antibiotics, so that's been enjoyable. Basically I'm cognitively doing MUCH better. I can stay focused on things all day, though I still struggle with making the "I really don't give a damn" type of decisions, and multi-step planning for doing something new. Even Dutch understanding went pretty well when family visited on Sunday, though I did get wiped out after a while.
My heart rate has been doing great. I took a shower today and only went over 100bpm a couple times. And it very quickly dropped again as soon as I stopped what I was doing and rested for a few seconds. I was even able to shave my legs for the first time in months!
It's been a while since I've had anything which I'd term as a crash. More commonly I get some OI hitting at the end of the day, or am just wiped out for a few hours after excessive activity. Much nicer!
Current labs being run:
Hemoglobine
Hematocrit + RBC
WBC
Thrombocytes
AST
ALS
GGT
Inflammatory cytokines
Perforin
Prostaglandin E2
D-lactate
Brucella
Midichloria Mitochondrii
Tularemia
Babesia FISH (new way to test for Babesia)
IgA/IgM of: Klebsiella pneumoniae, Pseudomonas aeruginosa, Citrobacter koseri, Pseudomonas putida, Morganella morganii, and Hafnia alvei.
So another 750 euros
Hanna
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Welcome to the Tetralysal Club Val ! (I joined the club 6 months ago and I am still in)
How's it been working for you?
Hanna
Senior Member
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So far so good I suppose.
Tetralysal seems to be a favorite abx in Belgium. I don't know why it is prescribed more than minocycline (which I love for its neuro-calming properties).
I am off Tetra for two weeks, trying to tackle babs with three courses of Riamet (= Co-Artem in the US). Then I am planned to return to my Tetra routine, in combo with Azythro or Cefuroxime.
The Midichloria Mitochondrii test is interesting. It could be (if the bug is found to be pathogenic) one of the missing pieces of our puzzle : PEM is linked to ME, not Lyme. But if there is a co-infection that attacks the mitochondria, this may be the link between tick born disease and PEM.
So fantastic to hear about your progress Val- really sounds like things are moving along for you - wonderful!!
I'm also really grateful to you for posting here about your experiences because it helps me to see that I could get better too - although still in a stalemate with treatment at the moment.
Take care,
Justy x
I'm also really grateful to you for posting here about your experiences because it helps me to see that I could get better too - although still in a stalemate with treatment at the moment.
Take care,
Justy x
Dufresne
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I think it depends on the ABX. I received an IV of Ancef and the herx was as bad as I've experienced. It was the same unmistakeable herx I get from eating garlic if I haven't had it in a while, only far more intense. Ancef and garlic are highly bactericidal, I think that's why the herx pops up within a few hours. Samento also brings on a herx within a few hours for me.
Dufresne
almost there...
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My "cardiac weirdness" is getting worse on samento. It feels like skipped beats. I get this tight feeling in my heart as if it didn't beat properly, followed by a massive, compensatory thump. It happens dozens of times throughout the day.
I learned back in 2009 I've a 2:1 a/v block (thanks to Dr Hyde). He suggested some people are just born with electrical problems of the heart. However I'd read this electrical problem could occur in Lyme carditis, and when I asked Hyde if I might have Lyme he answered, "you'd be in pain from head to foot if you did," which I'm not, so the diagnosis didn't come for another two and a half years.
Reading through the posts on this thread for the first time is really favourably disposing me to KDM. We need more like him.
That's exactly what i've been feeling for months but it has subsided with excercise.
I have RBTB.