In Belgium to see Dr de Meirleir

[heapsreal]

Lymecycline is supposed to be much better absorbed than the other tetracyclines. And it doesn't make me puke if I have my eyes open after taking it

So does that mean its more effective?

I thought there was only tetracycline mino and doxy. Didnt realize there were more tetracycline type abx and theres a few?

Cheers

 

[Valentijn]

So does that mean its more effective?

Yup. Compared to normal Lymecycline, normal Tetracycline needs to be taken in a much higher dose and several times per day.

I thought there was only tetracycline mino and doxy. Didnt realize there were more tetracycline type abx and theres a few?

There's 9 or 10 tetracyclines. "Tetracycline" is one of them, which is a little confusing

 

[RML]

Thank you @Thinktank , funny enough Super 8's Udo Choice were the probiotics I was taking before I even started seeing KDm and had someone to recommend anything. I will buy more when I get home again. I'll use up the one I bought last weekend, It was recommended at the health food store in Brussels, I can't work out what is in it them not in English.

 

[heapsreal]

Yup. Compared to normal Lymecycline, normal Tetracycline needs to be taken in a much higher dose and several times per day.

There'life tetracyclines. "Tetracycline" is one of tch is a little confusing

Yep. Tetracycline itself has short half life and not very good penetration especially through BBB. I believe mino has the better penetration than doxy but doxy has a longer half life and can be taken once a day??

i think in australia we only have the 3 tetracyclines.

have you read that high doses of doxy above 400mg are bacteriocidal? I know it effects l-form bacteria but do you know if it can kill spirochetes???

 

[Valentijn]

I'm nearly done with my 8 weeks of tetralysal (lymecycline) + azithromycin. Shortly after starting those, I got a new set of "stretch marks", this time on my left arm. They're short and going in every direction, and aren't on my right arm at all.

I like the tetralysal a helleva lot better than the doxycycline. The mild headaches were only during the first week or two, then none at all. Much better than having to get up at 3am to take doxycycline so I could sleep it off during the period where it was triggering intense motion sickness every day!

I don't like the Bififlor nearly as much as the VLS#3, but I guess it's better than nothing. Probably It seems to annoy my stomach a bit, maybe because of the extra flavoring or whatever they throw into it. I've been getting some diarrhea and loose stools on a regular basis.

Food intolerances seem to be doing better. With the digestive enzymes, I seem to get a lot less swelling than I used to. Though eating eggs for breakfast a few days in a row resulted in some pretty intense diarrhea, so maybe those still aren't safe. I'll try them again after being off the eggs for a week or so.

I haven't had any fevers for a while, apart from a bonafide flu I got from my fiance We were both out of commission for nearly a week with the same symptoms. It was pretty odd seeing him get OI and tachycardia - that's supposed to be my gig! Fortunately he's fully recovered, and I'm back to my usual ME self.

I do still get some hypotension 3-4 hours after taking tetralysal. But it seems to be milder and it's getting less frequent. Some days I'm not having that lie-down period at all now.

Sinuses are still gooey. And the flu triggered some green stuff, followed by some yellow stuff, and that still isn't quite gone despite being up to my eyeballs in antibiotics.

 

[Valentijn]

My original appointment was for last week, but that got cancelled due to Dr Meirleir giving a presentation in Nevada, I think. So it got rescheduled for today at 9:15am, which meant we had to get up hella early to make a two-hour drive during rush hour Fortunately there was no traffic, but that meant we missed out on sleeping in a bit, and had to wait a while for the appointment. I'd hoped that a morning appointment would mean it wasn't delayed, but no luck ... it still managed to be 45 minutes late. It was a bit odd, because a woman and her mother arrived 15 minutes after my appointment should've started, and still got called in before us! Maybe the receptionist hates me.

Dr de Meirleir was impressed with my new stretch marks on one arm, but not the other, took a look, and seemed quite certain that it's more Bartonella marks. I've had them appear suddenly before: in 2006 on my underbelly right after antibiotics for a sinus infection, followed immediately by a hemiplegic migraine - so maybe that was something neurological from the Bartonella. And about 2 years ago on my upper belly, before I started Lyme treatment, but shortly after taking a week of doxycycline for a sinus infection. And now, shortly after starting tetralysal for the first time. Anyhow, new antibiotics frequently seem to result in the Bartonella doing Something Naughty.

I tested negative for Babesia, Brucella, Midichloria mitichondrii (there go my Jedi dreams), Tularemia, Pseudomonas aeruginosa, Citrobacter koseri, Hafnia alvei, Klebsiella pneumonia, Morganella morganii, and Pseudomonas putida.

A few things have gone from being elevated down to being in normal range from the end of October to the end of February: IL-1b, IL-6, MIP-1b, and Perforin.

And a few things are less elevated than before, over the same time period: PGE2 has dropped from 12.06 to 8.47 (normal 0.10 - 2.81), IL-8 has dropped from 178 to 103 (normal 0 - 15), and MCP1 has dropped from 633 to 225 (normal range 0 - 165).

D-lactate was tested for the first time, and is high at 2.55 (normal 0.00 - 1.66).

Dr de Meirleir wanted to try and get a little blood sample from one of the marks, since that's the easiest place to find Bartonella, and testing positive could help with getting insurance dealt with and even medical cooperation from the Dutch system. I had tested negative an intake using several methods, since the older marks were already rather suspicious - but apparently it can be quite hard to get a sample with Bartonella in it, even when an infection is present. He came into the nurse's area to give drawing a bit of blood from a mark a try himself, but not even a drop of blood was forthcoming Pretty typical for my veins and blood vessels I guess.

Anyhow, treatment for Bartonella will proceed, due to pretty specific symptoms. So I'll be continuing with the tetralysal/lymecycline, stopping the azithromycin, and adding rifampicin. Folavit is also being added, which I think is just a high dose folic acid. I don't have any MTHFR mutations, so shouldn't have a problem making use of it. And continuing 4ME, digestive enzymes, probiotics, a biofilm buster, and high dose hydroxoB12 injections.

I'm also getting poo tested again, for inflammatory indications and flora. It should be interesting to see how the flora has changed, after being on antibiotics and probiotics for so long. My fiance volunteered to drive the sample down next week, so of course I started referring to him as my "poo courier" Which caused him to respond that maybe he shouldn't ferry my poo down after all, and I should take it myself on the train. So now he's my "poo ferry/fairy" Anyhow, we're supposed to keep the sample cool and get it delivered within two days. We got a portable electric cooler a year ago for our meds, so he can use that to ferry my poo in a cool environment.

I'll be going back on June 11th, at 2:15pm.

 

[MeSci]

I'm also getting poo tested again, for inflammatory indications and flora. It should be interesting to see how the flora has changed, after being on antibiotics and probiotics for so long. My fiance volunteered to drive the sample down next week, so of course I started referring to him as my "poo courier" Which caused him to respond that maybe he shouldn't ferry my poo down after all, and I should take it myself on the train. So now he's my "poo ferry/fairy" Anyhow, we're supposed to keep the sample cool and get it delivered within two days. We got a portable electric cooler a year ago for our meds, so he can use that to ferry my poo in a cool environment.

Poo fairy! Do they give you anything, like the tooth fairy? (I guess it's not best to leave the poo under your pillow...)

 

[MeSci]

Sinuses are still gooey. And the flu triggered some green stuff, followed by some yellow stuff, and that still isn't quite gone despite being up to my eyeballs in antibiotics.

I have some sort of allergy or infection creating green and yellow snot too. Maybe there is something going round, but the fact that I seem to have caught something that raised my temperature as well as snottifying my nose may be a good sign!

Sorry - mustn't hijack your thread...

 

[Valentijn]

I've been on Bartonella treatment (tetralysal + rifampicin + biofilm buster) for about two weeks now. Basically I'm back to feeling fairly crappy on a daily basis, getting feverish most nights and with OI acting up during the day. So similar to the herxheimer reaction I had with Lyme treatment, but definitely less intense. I also had some nasty headaches the first week or so, but those have cleared up.

My Bartonella "stretch" marks are also clearing up My fiance noticed it on my belly when I was putting on my pyjamas, but the ones on my left arm are also fading. Instead of being bright red and fairly wide, they now look more like wavy clusters of tiny red petechiae dots. We then had a look at my lower-abdomen marks from 6 years ago, and most had disappeared entirely. That was quite shocking, because I've had them for, well, 6 years! I'd assumed I was stuck with those.

I finally took some photos of them, while they're still somewhat visible, in case I need documentation for figuratively stabbing my health insurance company and/or the Dutch health care system in the face some day.

So, we're both feeling quite optimistic, even though I still feel cruddy on the antibiotics. My heart rate continues to recover pretty quickly, though it started doing that prior to Bartonella treatment, while I was still doing only Lyme treatment.

Though now I'm wondering how to determine when Bartonella treatment ends, since there isn't the classic herxheimer reaction to use as a guide, like there is with Lyme

 

[Valentijn]

I had another appointment with Dr de Meirleir yesterday. I've been having an OI flare which started about two weeks ago, so that made the trip down (2+ hours each way) pretty rough. Electrolytes seem to be helping, compared to past flares, but that mostly means I can sit up most of the day. Anything more than that is seriously wiping me out.

Anyhow, there wasn't any wait at the office this time ... the person called prior to me wasn't in the waiting room, so I was called in on time! Dr de Meirleir had my poo results back, and it was looking pretty bad. My bacteroides had gone from a nice 1.5% 18 months ago to 40%. Bacteroides aren't a problem when behaving themselves in the gut, but can huge problems (sepsis) if they escape the gut and get into the blood stream.

This might be a concern if there's a leaky gut going on, maybe especially if they've taken over the gut. Basically they're resistant to most antibiotics, which is why it's particular concern for sepsis, and the immune response in to form abscesses which might result in problems themselves. They might be especially able to take advantage of other gut bacteria being killed off by oral antibiotics, since bacteroides are relatively unaffected.

Anyhow, Dr de Meirleir has been looking into the problem a bit, but doesn't have a treatment ready yet. He's going to read some papers about it over the weekend, then I'll get the test results, prescriptions, etc in the mail, probably next week. Based on what I've gleaned from the research, quinolones are one of the antibiotic classes most likely to kill it, but I did poorly when taking one pre-ME, so hopefully something else will work as well.

Blood was drawn for more testing: bartonella (PCR), blood antibodies against gut bacteria which could indicate leaky gut, serology "zoonosis screening" (bartonella, lyme, coxiella, rickettsia), D-latate and L-lactate (one of those indicates leaky gut when elevated), and checking up on PGE2 and VEGF again. I'll also be sending another poo sample down to be tested for H. Pylori. My veins were hiding due to my OI issues, so Nurse Jan ended up drawing the blood out of the back of my hand

So I think the current concern and/or theory might be that some of my problems are coming from pathogens going where they shouldn't be going. I'm also going to try to get back on VSL#3, since my gut felt waaaay better on that than it does on the Bififlor. Hopefully it's available again!

 

[justy]

Hi Val, so sorry to have missed you yesterday! I ended up being there earlier than planned and was finished by 11am and then have been wiped out every afternoon and in bed.

Sorry to hear about the bacteroides and the problem with treating this. Did KDM say this was caused by the anbx to kill the Lyme etc?

I really hope you find something to fix this. My D lactate was raised but he didn't say anything about it - we had so much else to talk about, you know how it is you cant remember everything even if you write it down!

 

[Valentijn]

Sorry to hear about the bacteroides and the problem with treating this. Did KDM say this was caused by the anbx to kill the Lyme etc?

He didn't say. But since they were normal pre-treatment, it seems likely to be a factor.

 

[MeSci]

Ouch re blood from back of hand.

Sorry to hear about the gut probs. I have had some of that lately, but have put mine down to an intolerance of Vitamin D3 and then to the consequent probable gallstones.

I wonder whether you have picked up a summer gut bug - norovirus? I reckon that would deplete electrolytes and disrupt the gut microbiome, and the rest could arise from those.

 

[Valentijn]

I wonder whether you have picked up a summer gut bug - norovirus? I reckon that would deplete electrolytes and disrupt the gut microbiome, and the rest could arise from those.

Maybe ... but I didn't have any vomiting or serious diarrhea, or any other acute symptoms. Mostly it's been mild diarrhea at times, and pretty consistent moderate gut pain for a month or two. Though the diarrhea seemed to stop when I started making electrolyte drinks.

 

[Vojta]

My Bacteroides went up from 1.5% to 60% after his treatments. D-lactate increased too. I'm wondering if it could be reason why I'm worse and my inflammation went up. I didn't know that they could so dangerous. Now I have one more thing to worry about.

 

[Daffodil]

i think you get worse before u get better. my inflammation went way up mid treatment

 

[Solstice]

How are things now Valentijn?

 

[Valentijn]

How are things now Valentijn?

I saw KDM yesterday, and am now off antibiotics He's testing inflammatory cytokines and a couple other things, then he'll mail me a new treatment plan.

My gut's doing much better ... the extra antibiotic sorted it out quite well, and switching back to VSL#3 (now marketed as Vivomixx in Europe) seems to have helped as well. My cognitive function is still very good, and the aching chronic background pain is gone - though using my muscles still hurts. OI and PEM don't seem to have improved, but I typically have to be off antibiotics for a week or two before those get a bit better, so hopefully that will happen again now.

 

[Solstice]

I saw KDM yesterday, and am now off antibiotics He's testing inflammatory cytokines and a couple other things, then he'll mail me a new treatment plan.

My gut's doing much better ... the extra antibiotic sorted it out quite well, and switching back to VSL#3 (now marketed as Vivomixx in Europe) seems to have helped as well. My cognitive function is still very good, and the aching chronic background pain is gone - though using my muscles still hurts. OI and PEM don't seem to have improved, but I typically have to be off antibiotics for a week or two before those get a bit better, so hopefully that will happen again now.

Good to hear. I'm struggling with the same problem, 37% overgrowth of bacteroides, and an overgrowth of streptococcus. So i was wondering how you were doing. Starting treatment as soon as the antibiotics get in. What's an Ol flare btw? And how long did it take for symptoms to lessen? I wish you best of luck with the treatment. Thanks for your reply.

 

[Valentijn]

What's an Ol flare btw?

OI is Orthostatic Intolerance. I have the version with low pulse pressure.

And how long did it take for symptoms to lessen?

Cognitive problems largely disappeared during my first course of IV antibiotics. I think my gut problems were mostly gone again by the time I finished my 2nd 10-day course of the antibiotic for it. Pain has receded more gradually during the entire course of treatment, but has been gone for the past 3-4 months I think.