Hanna
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Well done Val !
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In Belgium to see Dr de Meirleir
- Thread starter Valentijn
- Start date
I had my visit with KDM today. Basically I said that I'm doing a lot better cognitively, and pain is gone, but that it took me about a week after stopping the first antibiotic that I started feeling much better with regards to activity and PEM, and it's still too soon to see if that's happening again. I also mentioned that I'm still having chronic sinus congestion and that my abdominal stretch marks turned bright red during the last couple weeks of the azithromycin. He said the stretch marks doing that are a sign of bartonella infection reacting to the antibiotics.
They drew 5 vials of blood ... testing for liver function and basic blood stuff, to make sure the antibiotics haven't messed me up much. Also rechecking the various things which were elevated in the first round of tests or are associated with Lyme activity - inflammatory cytokines, perforin, sCD14, and PGE2. Infections aren't being directly tested this time, so the cost will probably just be around 500 euros.
So the next stage is 2 months of two different oral antibiotics, each one taken every day. It's going to be doxycycline in the mornings and clarithromycine around noon. Clarithromycine is another one used for Lyme, though useful for many other things as well. And Doxycycline is commonly used in lyme, even as a short term just-in-case treatment immediately after tick bites sometimes. And still taking the B12, 4ME, digestive enzymes, and probiotics, plus now starting choline-with-DHA.
The drive down to Brussels went well, and we went to lunch at Fenikshof in Grimbergen after the appointment. We sat on the edge of the outside area, where we had an amazing view of the old abbey/church, and the weather was just perfect. I was able to sit with my feet up on a chair, and it was very relaxing ... we had cappucinos with whipped cream, and hammetjes. Then lots of traffic driving home, but I survived!
They drew 5 vials of blood ... testing for liver function and basic blood stuff, to make sure the antibiotics haven't messed me up much. Also rechecking the various things which were elevated in the first round of tests or are associated with Lyme activity - inflammatory cytokines, perforin, sCD14, and PGE2. Infections aren't being directly tested this time, so the cost will probably just be around 500 euros.
So the next stage is 2 months of two different oral antibiotics, each one taken every day. It's going to be doxycycline in the mornings and clarithromycine around noon. Clarithromycine is another one used for Lyme, though useful for many other things as well. And Doxycycline is commonly used in lyme, even as a short term just-in-case treatment immediately after tick bites sometimes. And still taking the B12, 4ME, digestive enzymes, and probiotics, plus now starting choline-with-DHA.
The drive down to Brussels went well, and we went to lunch at Fenikshof in Grimbergen after the appointment. We sat on the edge of the outside area, where we had an amazing view of the old abbey/church, and the weather was just perfect. I was able to sit with my feet up on a chair, and it was very relaxing ... we had cappucinos with whipped cream, and hammetjes. Then lots of traffic driving home, but I survived!
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It was great seeing you again too! And we really hope you're feeling better soonNice to see you again today, glad to hear of your improvements
Are you going to take a short break or start on the orals straight off?
I'll be starting on the oral antibiotics as soon as we can get them from the pharmacy!
We had a slight delay in getting the oral antibiotics, because we hadn't been given the proper prescription for it. So we called the clinic and they sent it via air mail, and it arrived Saturday. My fiance took the prescription in this morning, and they had both the doxycycline and the clarithromycin in stock, so I was able to start them this morning. Though it's only enough for a couple weeks, so we have to go back to the pharmacy for more soon.
I take 200mg doxycycline in the morning. It's one I had before for a week, and it makes pretty nauseated for most of the day. Not enough to stop me from usual activities, but enough that I don't want to eat solid foods. The usual advice is to eat right before taking it, but that just makes me feel like I'm really going to throw up. Whereas if I take it on an empty stomach I feel pretty queasy but not on the verge of vomiting. My hemp protein powder + almond milk went down okay, though still doesn't feel great. But probably the best option I'll have for the next couple months.
At noon I take 500mg of clarithromycin. I don't think it made the nausea any worse, but it might be extending the duration. Hopefully I'll be doing good enough in the evenings to get a proper meal in.
Due to the doxycycline causing a rash in some people when exposed to sunlight (hell, I can get rashes from the sun without the drugs!), I'm supposed to stay away from the sun.
I take 200mg doxycycline in the morning. It's one I had before for a week, and it makes pretty nauseated for most of the day. Not enough to stop me from usual activities, but enough that I don't want to eat solid foods. The usual advice is to eat right before taking it, but that just makes me feel like I'm really going to throw up. Whereas if I take it on an empty stomach I feel pretty queasy but not on the verge of vomiting. My hemp protein powder + almond milk went down okay, though still doesn't feel great. But probably the best option I'll have for the next couple months.
At noon I take 500mg of clarithromycin. I don't think it made the nausea any worse, but it might be extending the duration. Hopefully I'll be doing good enough in the evenings to get a proper meal in.
Due to the doxycycline causing a rash in some people when exposed to sunlight (hell, I can get rashes from the sun without the drugs!), I'm supposed to stay away from the sun.
@Valentijn
I hope the nausea will be over soon as it was for me every time on Doxy. I was told not to take calcium or other 2+ minerals 2 hours close to Doxy intake. At least my almond milk is fortified with calcium. I don´t know if it is enough to affect the uptake of Doxy. You might be aware of this already- sure you are. Best of luck!
I hope the nausea will be over soon as it was for me every time on Doxy. I was told not to take calcium or other 2+ minerals 2 hours close to Doxy intake. At least my almond milk is fortified with calcium. I don´t know if it is enough to affect the uptake of Doxy. You might be aware of this already- sure you are
. Best of luck!@Helen - I didn't know about the calcium (and magnesium) issues with doxycycline, and my almond milk is indeed fortified with calcium. I drank the almond milk a few hours after taking the antibiotic, so that was probably safe, but did have some almond milk in my morning espresso, so I should probably avoid that in the future
PS - My Dutch in-laws were over here a couple days ago, and looking at the prescription. They were confident that "Meirleir" is pronounced very much like "Meyer liar" (they rhyme), though with the vowels being a bit less distinct from each other.
I'd been wondering about how it's pronounced, so it's nice to know They also mentioned that it's a very odd name - but this is coming from inhabitants of a country where their ancestors came up with a bunch of ridiculous last names when forced to choose something
I'd been wondering about how it's pronounced, so it's nice to know
They also mentioned that it's a very odd name - but this is coming from inhabitants of a country where their ancestors came up with a bunch of ridiculous last names when forced to choose something 
Sushi
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PS - My Dutch in-laws were over here a couple days ago, and looking at the prescription. They were confident that "Meirleir" is pronounced very much like "Meyer liar" (they rhyme), though with the vowels being a bit less distinct from each other.
I'd been wondering about how it's pronounced, so it's nice to know
I wimp out in the clinic and just called him "the Professor." My attempts at his name probably mean something even more odd than the real meaning.
Sushi
Gingergrrl
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When I called WPI trying to see KDM in Reno (before I ended up going to OMI instead) the woman on phone called him Professor De Mer Li Yeh (from a phonetic perspective) but she was American and probably just guessing!
They just call him "The Professor" at his clinic in Brussels. It's a tough name even for the Dutch
I always go with mer (as in French for the sea) and lair( as in in a wolves lair). It probably comes off sounding too French this way. Alternatively I also wimp out and call him 'The Proffessor', but then that's what the clinic staff call him also.
I am so used to calling him KDM online and when discussing things about consultation or treatment with my Mum, I really have to get into the habit of calling him 'the Professor' now I am at the clinic. I won't mention publicly here what name just slipped out accidentally, but at least it was in the IV room with a small select group of friends, not the staff, or especially the man himself. I am happy to stick with the Professor, since that is what the staff use, and a whole easier then trying to pronounce his surname wrongly.
So the 2nd day went better - the nausea faded after a couple hours, and was less intense to start with. Then feverish again in the evening.
Day 3 was also better again with regards to nausea, and I had almost none. Hence I think that completely avoiding food when taking the doxycycline was helpful for me. But then I got weak and feverish a lot earlier, in the early afternoon, and lasting until I went to sleep.
Today is Day 4, and I just took my morning dose of doxycycline about an hour ago. I didn't feel nauseated at all, so I took my NAC and fish oil half an hour later. And 5 minutes after that I was worshiping the porcelain god, as the saying goes. I spent about 5 minutes throwing up somewhat violently. Throat and jaw muscles were painfully clenched during the process, and still sore now and will probably ache like a bastard later.
Doxycycline in the form I have (tablet which dissolves in a glass of water) should be getting absorbed pretty fast, so I probably got some of it into my system. And I'm keeping down lots of water without any problem now, so that's good at least
Day 3 was also better again with regards to nausea, and I had almost none. Hence I think that completely avoiding food when taking the doxycycline was helpful for me. But then I got weak and feverish a lot earlier, in the early afternoon, and lasting until I went to sleep.
Today is Day 4, and I just took my morning dose of doxycycline about an hour ago. I didn't feel nauseated at all, so I took my NAC and fish oil half an hour later. And 5 minutes after that I was worshiping the porcelain god, as the saying goes. I spent about 5 minutes throwing up somewhat violently. Throat and jaw muscles were painfully clenched during the process, and still sore now and will probably ache like a bastard later.
Doxycycline in the form I have (tablet which dissolves in a glass of water) should be getting absorbed pretty fast, so I probably got some of it into my system. And I'm keeping down lots of water without any problem now, so that's good at least
MeSci
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Today is Day 4, and I just took my morning dose of doxycycline about an hour ago. I didn't feel nauseated at all, so I took my NAC and fish oil half an hour later. And 5 minutes after that I was worshiping the porcelain god, as the saying goes. I spent about 5 minutes throwing up somewhat violently. Throat and jaw muscles were painfully clenched during the process, and still sore now and will probably ache like a bastard later.
Doxycycline in the form I have (tablet which dissolves in a glass of water) should be getting absorbed pretty fast, so I probably got some of it into my system. And I'm keeping down lots of water without any problem now, so that's good at least
Oh dear - what's the solution for the NAC and omegas then - take them at a different time?
Hope the throat and jaw recover soon!
Yeah, I tried the fish oil again this afternoon, after sleeping for 3 hours
, and had no problem. So I think I just need a water-only tummy for the doxycycline. I don't know if I need the NAC currently anyhow ... I take it primarily for sleep, but I've been getting a lot of sleep anyhow the past few days - like, where I literally can't keep my eyes open and just drift off.