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In Belgium to see Dr de Meirleir

Daffodil

Senior Member
Messages
5,875
i couldnt tolerate doxy due to severe diarrhea so i had to be put on minocycline instead :-/
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I spent a month on Doxy and found it very had going. Dry retching and constant nausea. For me it was white toast or orange juice with the bits in (so not smooth) that helped. Also coca cola for some bizarre reason.
 
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Messages
15,786
Fish oil on an empty stomach? :wide-eyed: :vomit:
My stomach is very difficult to upset. Even when very sick and badly needing to throw up, I just can't do it :p It had been years since I previously vomited, if not decades.

Anyhow, my nausea while taking the doxycycline seems to be more neurological than gut-related. Watching TV or doing much of anything on my laptop makes me feel pukey, but staring out the window or laying down with my eyes closed resolves it pretty well.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Anyhow, my nausea while taking the doxycycline seems to be more neurological than gut-related. Watching TV or doing much of anything on my laptop makes me feel pukey, but staring out the window or laying down with my eyes closed resolves it pretty well.

Like motion sickness?
 
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15,786
I'm into week 2 of the doxycycline and clarithromycine now. I've discovered that if I wake up early (6-6:30), swallow the dissolved doxy in a little water, and drink a cup of plain water, I can lay back down and rest/doze/sleep for a couple hours and not getting any motion sickness at all. My stomach itself seems to have no problem with the doxy - just my brain, from 30-120 minutes after taking it.

Still feverish and having low blood pressure and/or pulse pressure every day. It hits worst in the late afternoon and early evening, so I need to do my showering pretty soon after my doxy nap. Yesterday my heart rate was 100-110 sitting with my feet up, 90-95 laying down, and hit 130 when I walked 20 feet to the kitchen to refill my water jug :cautious: Fortunately it only lasted a few hours, and I was able to get some sleep when the time came around.

My mother's going to try to come and visit to take care of me again, since I really can't even cook. My in-laws are closer and also very helpful, but they have a nasty cold or flu currently, so are feeling pretty poorly themselves, and I really don't want to catch a virus right now.

I'm scheduled to go back to see Dr de Meirleir on November 17th, when these antibiotics are done.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Glad you've found a way of taking the doxy.........its a long course until 17th Nov:(
You're doing so well getting through this.
I presume the clarith is not causing the same problems.
Then its onto the herbals.
Mum to the rescue again, good on her. Did she get to see a LLMD in the US?
 
Messages
15,786
I presume the clarith is not causing the same problems.
No nausea with the clarithromycine, but I do think that one's having the bigger impact on my orthostatic hypotension, since it would mean a pretty huge delay for the doxycycline to be causing my problems in the afternoon.
Mum to the rescue again, good on her. Did she get to see a LLMD in the US?
Yup, she's very happy with her. She's taking 2 months of oral Rifampin now for Bartonella and Lyme. She got a bit sick the first day (fever, exhaustion) but has been fine since then.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Its fateful to say anything positive:rolleyes: I've become so superstitious since getting sick. Another ME/Lyme symptom:lol:
Hope it soon passes for her.
 
Messages
15,786
I've finished my fourth week of oral doxycycline + clarithromycin. Just 4 weeks left to go!

I'm still getting fevers daily, though usually just lasting several hours per day. Until yesterday when it started in the afternoon as usual, then lasted all evening, all night, and now all morning. Meh! :depressed:

Nausea is still adequately solved. I just take the doxy when I wake up to pee between 3:30 and 6:30 am, then go sleep it off with no problems. I'm also getting less of a sucking-lemon pucker reaction when I chug it now. Maybe because I've managed to go so long without throwing up due to it :D

I'm still doing 4ME (Nexavir) injections once per day, and a really high dose of hydroxoB12 twice per week, intramuscularly. I tried the Choline-DHA but felt crappier after taking it. And I've felt consistently crappy the past several weeks, so it's difficult to try it again and discern if I feel crappy due to it versus everything else which is making me feel crappy.

Still no diarrhea, except intermittently after I eat too much gluten and/or egg whites. I seem to be having less of a reaction to gluten, dairy, and soy now. Very little swelling from them, if any, and my usual "base" level of swelling even seems to be diminishing. I'm also still taking probiotics and digestive enzymes.

I haven't been able to cook much for a while, since starting the new antibiotics pretty much. The hypotension is quite a killer in the evenings. So either I start something early in the afternoon, like a slow-cooking stew, or we order food to be delivered.

We're going to call or email for my tests results from last month in the next day or two, and are back in Belgium to see Dr de Meirleir on November 17th. Then hopefully off to Seattle to visit family in December, though no idea what sort of shape I'll be in!
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
She actually started reacting again last night ... chills and fever for a bit :thumbsup:

I hope it all goes well for her... how are YOU doing? any major or even minor improvements since starting the treatment?
 
Messages
15,786
I hope it all goes well for her... how are YOU doing? any major or even minor improvements since starting the treatment?
Mostly just herxing and feeling like crap :p It makes it hard to tell if there's been any improvement. OI is bad due to the herxing, though in slightly different ways - I'm fine sitting up all day, never struggling with that at all, but after a minute of standing I'm in really bad shape. Plus my feet are turning dark red and itching like bastards when standing up, something which doesn't happen with my normal OI.

Still little or no pain usually. Food tolerances have improved. Sleep seems better than usual, but was never particularly bad for me as long as I took NAC anyhow. Sinuses still produce some mucus, but it hasn't been yellow since the first week or so of starting the oral antibiotics. Prior to that it was yellow on a daily basis. I've got cognitive difficulties again, but that's probably due to the herxheimer reaction and frequent fevers.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Mostly just herxing and feeling like crap :p It makes it hard to tell if there's been any improvement. OI is bad due to the herxing, though in slightly different ways - I'm fine sitting up all day, never struggling with that at all, but after a minute of standing I'm in really bad shape. Plus my feet are turning dark red and itching like bastards when standing up, something which doesn't happen with my normal OI.

Still little or no pain usually. Food tolerances have improved. Sleep seems better than usual, but was never particularly bad for me as long as I took NAC anyhow. Sinuses still produce some mucus, but it hasn't been yellow since the first week or so of starting the oral antibiotics. Prior to that it was yellow on a daily basis. I've got cognitive difficulties again, but that's probably due to the herxheimer reaction and frequent fevers.
How long can you expect a herx to go on for?