MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
Hope things improve for you soon, and that the positive tone of your messages is reflected in your 'real life'.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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In Belgium to see Dr de Meirleir
- Thread starter Valentijn
- Start date
Hope things improve for you soon, and that the positive tone of your messages is reflected in your 'real life'.
Gingergrrl
Senior Member
- Messages
- 16,171
@Valentijn I am always so impressed with how well you handle all of the IV's and treatments and herx symptoms. I know it has been a long road and your positive attitude helps me a lot to not give up when I feel discouraged. If I understood correctly, in four weeks you are totally done with your treatment?!!! If so, that is great news. Will you be planning your wedding soon after that (don't answer if that is too personal question.)
Yup, it should be done in 4 weeks. Though we'll see how symptoms and lab results are doing.
Regarding the herxheimer symptoms ... they really suck, but aren't much worse than my usual ME/CFS issues. With the difference that now at least the symptoms are an indication of progress. It does require adapting, just like we had to do when first getting ME/CFS. Except now my adaption is chugging doxy at the crack of dawn so I don't throw up, getting all of my "activity" slowly done between about 9am and 1pm, being prepared to be feverish and brain-dead for the rest of the day, and keeping the local delivery restaurants in business
Honestly, it's better than the OI episodes that would leave me bed-bound for weeks. As long as I can get online, play stupid games, watch the goofy birds in the garden, and watch TV, I'm not too annoyed about life. Though definitely looking forward to being able to do more!
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I'm now into week 6 of the oral antibiotics, with less than two weeks left If counting the entire time I've been on antibiotics, I'm on week 18 out of 20. More than 90% done!
Everything is going pretty much the same. I get less fevers and brain fog in the afternoon and evening (none the past two days), but still hypotension during that time. So maybe I'm finally running out of spirochetes to kill.
If counting the entire time I've been on antibiotics, I'm on week 18 out of 20. More than 90% done!Everything is going pretty much the same. I get less fevers and brain fog in the afternoon and evening (none the past two days), but still hypotension during that time. So maybe I'm finally running out of spirochetes to kill.
Little Bluestem
All Good Things Must Come to an End
- Messages
- 4,930
Kill those spirochetes! Kill those spirochetes!
and the biofilms and the cysts!!!Kill those spirochetes! Kill those spirochetes!
The last weeks or so has been more hypotension and fevers, though the time of day for both seems to be shifting. Sometimes overnight, or in the morning, instead of just in the afternoons and evenings.
We went to Brussels for my appointment today. After waiting for 90 minutes, we chatted with the doctor for about 15 minutes, and since I'm still having some Herxheimer symptoms (and maybe because I still have sinus issues), I'm taking the doxycyline and clarithromycin for another 2 months. So that will be 7 months of antibiotics when that's done.
I got prescriptions renewed, and got some lab results from blood taken two months ago as well. On the basic blood stuff, eosinophils are a little elevated, and liver enzymes are higher than they were 5 months ago, but still nicely in range. For the inflammatory and Lyme-related markers, I have some stuff elevated now which was normal before - possibly due to my immune system being screwed after 20 years of untreated infection. I'll try to post those results tomorrow.
The drive down there and back went pretty well, even if they delay at the office meant we were driving home during rush hour. Fortunately the congested traffic was always going in a different direction I'm also getting used to the 2 hour drive, and breaking it down into 30 minute segments which makes it seem to go faster ... Brussels to Antwerp, Antwerp to Breda, Breda to Utrecht, and then Utrecht to Amersfoort - home!
I'm traveling to the US in about a month, so will be on antibiotics at that time and probably hypotensive. We're going to try to extend the time that we get to keep the freebie wheelchair. It's scheduled to be returned on January 3rd, and might not be possible to extend - basically you either need a short-term wheelchair and get in from one source, or you need a permanent wheelchair which comes from a completely different source. But maybe they'll be okay with just giving me an extra couple weeks, or start a new 6 month "temporary" period.
Anyhow, that means we definitely need to arrange wheelchair transport through the airports, and possibly taking it on the airplane as well. Most flights can take one or two folding wheelchairs in the cabin, and that way we don't have to screw around with random passengers spontaneously deciding they want to ride in the wheelchair I reserved at the destination airport, leaving me sitting on the ground while waiting for another one to arrive
I'm still looking forward to the trip though. We'll just be staying on a small island with just a couple towns, so it should be pretty quiet and non-busy. And my mommy will be cooking lots of healthy food
We went to Brussels for my appointment today. After waiting for 90 minutes, we chatted with the doctor for about 15 minutes, and since I'm still having some Herxheimer symptoms (and maybe because I still have sinus issues), I'm taking the doxycyline and clarithromycin for another 2 months. So that will be 7 months of antibiotics when that's done.
I got prescriptions renewed, and got some lab results from blood taken two months ago as well. On the basic blood stuff, eosinophils are a little elevated, and liver enzymes are higher than they were 5 months ago, but still nicely in range. For the inflammatory and Lyme-related markers, I have some stuff elevated now which was normal before - possibly due to my immune system being screwed after 20 years of untreated infection. I'll try to post those results tomorrow.
The drive down there and back went pretty well, even if they delay at the office meant we were driving home during rush hour. Fortunately the congested traffic was always going in a different direction
I'm also getting used to the 2 hour drive, and breaking it down into 30 minute segments which makes it seem to go faster ... Brussels to Antwerp, Antwerp to Breda, Breda to Utrecht, and then Utrecht to Amersfoort - home!I'm traveling to the US in about a month, so will be on antibiotics at that time and probably hypotensive. We're going to try to extend the time that we get to keep the freebie wheelchair. It's scheduled to be returned on January 3rd, and might not be possible to extend - basically you either need a short-term wheelchair and get in from one source, or you need a permanent wheelchair which comes from a completely different source. But maybe they'll be okay with just giving me an extra couple weeks, or start a new 6 month "temporary" period.
Anyhow, that means we definitely need to arrange wheelchair transport through the airports, and possibly taking it on the airplane as well. Most flights can take one or two folding wheelchairs in the cabin, and that way we don't have to screw around with random passengers spontaneously deciding they want to ride in the wheelchair I reserved at the destination airport, leaving me sitting on the ground while waiting for another one to arrive
I'm still looking forward to the trip though. We'll just be staying on a small island with just a couple towns, so it should be pretty quiet and non-busy. And my mommy will be cooking lots of healthy food
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Basic blood labs:
The first column of results are from 2 months ago (after 3 months of treatment), and the second column is from 11 months ago (pre-treatment).
New inflammatory and Lyme-related results from 2 months ago (after 3 months of treatment):
And the same lab results from 11 months ago (pre-treatment):
So IL-10, IL-12p70, and TNFS didn't change and are still in range. TGF-b1 went down a little, and sCD14 stayed about the same.
IL-1b and IL-6 doubled, and are now elevated. IL-8 is still high, but went down a lot - that one's associated with inflammation, and I've had a helluva lot less swelling since starting antibiotics.
MCP1 started out high 11 months ago, and tripled. PGE2 was also already high, and has now more than doubled. PERF is now ever higher above the normal range.
MIP-1b started out nicely in range, but is now elevated.
Now to figure out what it all means
The first column of results are from 2 months ago (after 3 months of treatment), and the second column is from 11 months ago (pre-treatment).
New inflammatory and Lyme-related results from 2 months ago (after 3 months of treatment):
And the same lab results from 11 months ago (pre-treatment):
So IL-10, IL-12p70, and TNFS didn't change and are still in range. TGF-b1 went down a little, and sCD14 stayed about the same.
IL-1b and IL-6 doubled, and are now elevated. IL-8 is still high, but went down a lot - that one's associated with inflammation, and I've had a helluva lot less swelling since starting antibiotics.
MCP1 started out high 11 months ago, and tripled. PGE2 was also already high, and has now more than doubled. PERF is now ever higher above the normal range.
MIP-1b started out nicely in range, but is now elevated.
Now to figure out what it all means
good luck with figuring it all out @Valentijn , let me know when you do, mine are very similar, whackingly higher than yours on some and slightly better on others. On the other hand, haven't ever shown any of my results to my UK GP, do you think he'd understand them and explain it to me? hahaha.
Sorry to hear you have to continue with the abx, bit of a blow I'm sure but you've taken it with the right attitude.
Where is the island, I need to come
Sorry to hear you have to continue with the abx, bit of a blow I'm sure but you've taken it with the right attitude.
Where is the island, I need to come
Your GP's response:
From https://constantfuckingshit.wordpress.com/mecfs-explained/
That list always cracks me up.
I'm now into week 11 of oral antibiotics. They still suck. Hypotensions, fevers, lots of ordering delivery for dinner Still no new side effects, including diarrhea.
My mother's doctor started her on doxycycline too, which she takes twice a day in addition to taking rifampin once per day. She has the same motion sickness problem I get, so takes her morning dose before getting up for the day, though the afternoon dose does cause her some nausea. She's also feeling the effects more now - wiped out a lot.
It's just 9 days until I travel, which involves 9-10 hours of flying, and an airport (Amsterdam Schipol) which is pretty bad at dealing with disabled passengers. Fun! I also couldn't get seats on the plane which has a nice layout for the toilets, so instead of sitting very close to the front of the plane, near a toilet, and in a seat where I can put my feet up, we're sitting at the very back of the plane near a bathroom. Better to have to walk a long distance getting there from the entrance, rather than a long distance (and maybe standing to wait) every time I need to pee.
Still no new side effects, including diarrhea.My mother's doctor started her on doxycycline too, which she takes twice a day in addition to taking rifampin once per day. She has the same motion sickness problem I get, so takes her morning dose before getting up for the day, though the afternoon dose does cause her some nausea. She's also feeling the effects more now - wiped out a lot.
It's just 9 days until I travel, which involves 9-10 hours of flying, and an airport (Amsterdam Schipol) which is pretty bad at dealing with disabled passengers. Fun! I also couldn't get seats on the plane which has a nice layout for the toilets, so instead of sitting very close to the front of the plane, near a toilet, and in a seat where I can put my feet up, we're sitting at the very back of the plane near a bathroom. Better to have to walk a long distance getting there from the entrance, rather than a long distance (and maybe standing to wait) every time I need to pee.
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- Messages
- 28
Hi Valentijn. It's interesting that your Prostoglandine E2 has more than doubled since starting treatment. Prostolgalandine E2 is a measure of neurological inflammation. I imagine the antibiotics are causing herx within the brain itself. KDM has prescribed Diclofenac to keep mine under control. Diclofenac belongs to a classification of drugs known as non-steroidal anti-inflammatory drugs. They work by blocking certain prostaglandins. I've found them very useful for brain fog but they are not recommended in people with major gut problems.
MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
I have a couple of blogposts on natural alternatives for lowering PGE-2, IL-1 and other inflammatory cytokines. I haven't had much success, but others have, with the supplements I refer to and/or others. This is my first blogpost on the subject.
Actually, it's halved, Valentjin just posted her results the other way round. It's interesting that this and Il-8 have fallen the most, these are the two that were raised in me, so hopefully I can get my results looking more normal if I do the same! I only hope I tolerate the treatment as well as you seem to, Valentjin.
Oh, and I know that the idea of getting treatment is not to get better results, but they are reassuring all the same (more reassuring than doctors telling you it will probably be okay).
Oh, and I know that the idea of getting treatment is not to get better results, but they are reassuring all the same (more reassuring than doctors telling you it will probably be okay).
