This info session was recorded on January 12, 2023, so some of the information has been updated since then after we got the grant from Balvi.
RemissionBiome – Info Session – Transcript
Tess: Okay I guess we might as well get started. I guess you can see, you know Tamara, and I’m Tess and we’re just gonna be doing a quick overview of our project, a little bit of our backstories and the protocol we’re working on and a little bit of the science but we’re not going to really go into many details in this first part. We’re actually going to record a podcast next week where we’ll go into more details so you can watch that later and then I figure during the conversation part, you know if people have questions, we can just discuss anything that comes up.
Meder we just met last night and he already put together a website for us so you can see it at the bottom remissionbiome.org. That Google doc that I had put together, that information is now on the website and it’s easier to navigate through.
Meder: yeah it’s a pleasure to help out yeah yeah
Tess: he’s like hey I can do a website for you and then like an hour later he had something up.
Tess: So, I think I was on the path to become an astronaut. I was a three-sport athlete in high school. I was valedictorian and got a full ride to study aerospace engineering at the University of Michigan so I was doing really well before I got sick. I went to do a summer internship at NASA JPL in Pasadena and I just started having really weird symptoms. I had red spots on my arms and then I started getting hives and swelling every day. I went to the ER and was told that I had valley fever (that’s a fungal infection that comes from the soil and you breathe it in and it’s common in that area in California.) I’m still not sure if that’s actually the right diagnosis but whatever it was that hit me then it hit me like a brick wall.
I went back to school and I still continued to have everyday hives. It was so bad my eyes would swell shut I couldn’t see anything. I got exhausted. I could barely get out of bed. I had a really hard time going to my classes. I somehow still graduated. I just kind of kept getting worse. I went back to work full time at JPL. Then my brain wasn’t working so I was like, oh I just need to learn more, so I went to do a PhD at Berkeley (side note not a good idea to do that. That’s a whole other story.)
I just continued to get worse throughout grad school and I got to the point in like January of 2009 where I was nearly bed bound. I was in constant pain. I had major brain fog like. I was hardly able to do anything on my PhD. When I tried to stand up I would nearly pass out or or I would pass out. I was in bed like 18 to 23 hours a day and when I wasn’t in bed I was laying on the couch because my orthostatic intolerance was so bad. I was going to all kinds of doctors. I ended up taking getting prescribed antibiotics and I went on a gluten-free diet at the same time because I knew Celiac ran in my family and two days later I had the remission event.
I went to bed in that really bad State one night and then I woke up in the morning at 6am and, before that I couldn’t get up before 11 am. I woke up at 6am I it was like disorienting because my chronic pain was gone and so it was almost like I didn’t even feel like I was in my body anymore. It was like I couldn’t feel the boundaries of my body because I didn’t have that pain throughout my whole body anymore and my brain started working. I had a bunch of memories come back that I hadn’t thought about in years. I started having ideas for my PhD project and so this is all happening while I’m laying in bed and like this is bizarre what is going on.
I then jumped out of bed and my body was like light. I didn’t have any pain, my muscles didn’t have the burning feeling that they constantly had before. Colors seemed brighter and fragrances like food seemed more intense. I just felt like profound gratitude and I remember it was raining that day and I went outside and I could like feel the raindrops on my face. It was almost like they’re in slow motion, like I just noticed all the raindrops. It was like the most bizarre experience of my life and it’s really hard to explain or describe if you haven’t felt it.
So that lasted for two days for me and on the second night I accidentally ate gluten and I woke up the next morning and I was back in my sick body I felt everything again and so I just assumed that it was going gluten-free that had caused my remission and I’m actually still gluten-free 13 years later because of that. I still think I might have Celiac because it runs in my family and I have the genes, but I now think the antibiotics were the main cause, because of meeting Tamara and meeting the other people that had this happen, some of them are at this meeting and can quickly describe their experience at the end of this.
So after that my baseline increased a lot. You can see in this picture at the bottom left was me when I was really sick. Oh you know this is bad lighting but that’s how I felt I just felt exhausted. I think that’s my husband’s arm in the the bottom so I thought that was appropriate. I felt like he was holding me up in this picture.
The middle one is a few months after I had my remission. I just felt so much better. I just felt like I could do so much. This period lasted like 11 years where I was way better I was never back in bed until phase four which I’ll get into um and I would I would kind of I would go up and down I would have some points where I felt exhausted and I just thought every time that it was because I was accidentally eating gluten.
I still didn’t have any real diagnoses at this point then in the fall of 2020 I started having a lot of symptoms come back and I ended up nearly bed bound again and that’s when I learned about ME/CFS and I looked at the diagnostic criteria and I was like this is me. I think back to those 11 years. I was trying to train for triathlons and do all these things and pushing myself to get my PhD. Now that I look back I was like wow I was crashing. I was having post-exertional malaise. So in 2020 I finally I also got diagnosed with hypermobility spectrum disorder, Mast Cell Activation, dysautonomia, all the things. That’s when I joined Twitter to try to learn more about ME/CFS. I went anonymous because I didn’t want people knowing about my health issues, which now everybody’s going to know about but that’s okay because I think it will help other people.
Tamara: I’m going to run through mine a little bit quicker. I was a grad student when I got Dengue. I was working on tropical Rock pools in Jamaica and got bitten by an Aedes aegypti mosquito. I had an acute case of dengue. The locals knew exactly what was going on they they brought me medicine, bush medicine. I ended up having about a two-year uh long Dengue period and luckily I was just finishing my PhD.
I’d almost finished up my dissertation, and I just started my postdoc and I was actually able to take it relatively easy, so in two years I mostly recovered. Fast forward to 2012. I went on sabbatical. I was a tenured professor of biology at Dalhousie. My life was insanely busy as you can imagine just receiving tenure. I went down to Panama and the picture of me walking through the swamp and on the boat that’s Panama right at the beginning of 2013.
By the end of that year I had gone on disability leave. I got sick very very fast but it was relatively mild and I tried to keep up. I was a professor. There was no way that I was going to drop my PhD students, so I struggled through until 2016 and finally I was completely bed bound and went on disability leave three years after that. After two years of being completely bed bound in a dark room, I was absolutely heading in the tube feed direction.
I got a very severe mouth ulcer abscess and I had quite a few of them. This time they prescribed me AmoxiClav. I had always fought it because my family had a history of problems with that specific antibiotic, but this time I was so sick and my regular doctor wasn’t around that I just took it. On day four of the AmoxClav, within a couple hours I ended up having this miraculous remission event. Mine only lasted for four hours so it was very quick.
I think it was quite unique because I felt it come on and I felt it fade away and it came on in about 20 minutes. I went from being bed bound to twirling around outside carrying my sister’s dog doing angels in the grass. I thought it was a spiritual awakening. I had started meditating a while before this and so I filmed it. It was miraculous, the colors being brighter was incredible but the Gratitude was overwhelming and the sense never really knowing before how sick I was was so profound.
If anything sticks with me from that day it’s that I just had no idea that I was that sick. I had no idea that life could be so different from what it was before. So it was truly a miracle and in about three and a half hours I did nothing during that time but just enjoyed the sun, just enjoyed the world I just looked at and I loved the world. My sister came home and I told her what was going on and you know she’s I’m sure thought I was having a psychotic break and I said to her you know what the veil is starting to come down, and it did.
It was indescribable, but the veil slowly descended over a period of about 20 minutes and the hat came back on, the earphones came back on, the lights went down in the room and I was back in bed. In that period when I was completely bed-bound, I’d lost the ability to walk and I had thought it was possibly a stroke. My face fell at the same time. So I was slowly able to actually start retraining myself to walk again and it was really like it took a very long time but within about six months I was up and I even went to a meditation conference in Malta. I had a lot of help there but I did it. I went from severe to moderate and I was stable and improving until I got my second vaccine and at that time that hit kind of pushed me down. I’m not severe anymore but I am back in bed most of the time so it’s pretty tough.
Tess: So I was on Twitter. I love science and after I found out about ME/CFS. I just dove into the literature and started learning as much as I could. I came across things like Navioux’s cell danger response hypothesis and Phair’s metabolic traps. During the 11 years after my remission, I really got into evolutionary medicine and thought a lot about the evolutionary perspective and so I came across sickness behavior, which is evolutionary adaptive after acute infection. I was thinking about all these things and with my background in engineering I had done systems engineering and so I was trying to put the pieces together and think about it as a systems problem.
I did this post you can see on the left there about some of the evolutionary medicine that I was thinking about and then I saw someone retweeted this, who ended up being Tamara, Dr T. She said that she had a similar model in mind and so we started talking on that thread and I was just like I was so excited. I was like this person understands where I’m going. She knows more about the science that I do, so I’m so excited to talk to her. Then she mentioned she had this remission event and I was just like wait a minute, I had a weird mission event too. I think I still didn’t quite understand how similar our events were and didn’t quite make that connection yet until we started talking more and she mentioned the colors were brighter. I was like whoa wait a minute. She started describing what happened and I was like in 13 years nobody else has ever really understood what I went through and she did. I was 100% sure she understood what this was like. We became really good friends almost instantly. Do you want to add anything here Tamara?
Tamara: I’ll probably cry if I do
Tess: That was September of last year, so we’ve only known each other for a few months but we started talking almost every day and sharing ideas and that led to RemissionBiome. Tamara came up with most of the ideas for our project. She was the one that said, I’m thinking about taking antibiotics again and seeing what happens and she said, maybe you know you should do it at the same time and I was like sure this sounds like an interesting experiment.
She had a BiomeSight kit on hand so she suggested that I should get one too. I bought one and so that’s how it all started and it was just small then. I think Tamara had the idea to reach out to companies and just see if we could get any other tests. She started emailing people and the response was amazing, like quickly we had more BiomeSight tests. We had ProdromeScan blood tests and so all of a sudden it was like whoa this could be something more. Around that time we also started posting about this on Facebook groups and on Twitter. and we started finding other people who experienced this, so that just sort of added to this idea that there’s something to this. We need to figure this out and so you know.
Tamara: Could you mention how Phair came in? The incredible process at this point because I think it’s really rounds it out
Tess: Yeah so you know Tamara had, we had both had read about his ideas his metabolic traps and itaconate shunt and Tamara had actually emailed him back right after her event. He thought it could make sense and so we thought oh we should reach out to him again and tell him that we have found more people, and so we did and he actually agreed to do a Zoom meeting with us. We had an amazing meeting where we were just bouncing ideas off of each other. We didn’t mention that our baselines improved until right at the end of the meeting, Tamara brought it up, and it was like we had already had this amazing meeting and then he just lit up and he’s like wait a minute your baseline’s approved? Okay this is really something, there’s something to this and do you want to add to that Tamara?
Tamara: Well, then Tess actually flew out to Stanford and met with him. So we we actually are really dialed into that research community, which is extremely exciting. We actually have a real working systems model that could explain what’s going on here. In a way the science is actually really far along on this problem and if we can bring the anecdotes to meet the science here I think that’s what’s incredibly exciting is that we actually we already have the model we just need to find more people who’ve had the event and we need to track their biochemistry.
Tess: So the photo there is actually my notes during my face-to-face meeting with Rob Phair. I was sitting there at a coffee shop and I just started writing things down that I wanted to talk to him about and I had all this stuff. He came into the coffee shop and he saw my notes. I mentioned I have all these ideas but they’re kind of chaotic and he was like it’s really cool that a patient is able to do this.
That’s sort of how I feel. I think the patient Community coming together sharing ideas and making this happen helping us with funding is amazing – helping us with our website. Thank you to all of you who have helped even you know sharing stories. It’s super helpful getting these anecdotes.
So, Tamara and I started talking about this. It quickly blew up into a much larger project than we expected and then Tamara came up with the hashtag RemissionBiome, so we started using that. I won’t go into the details of the science but this is the model thatTamara is talking about. We continually add to this as we learn more and talk to other scientists, but these are you know possible pathways to lead from taking antibiotics to having something happen in the brain that can cause this spontaneous remission. We still don’t quite understand that there’s still questions but one of our ideas is like a mass homeostatic event that happens to the microglia. The microglia are really important cells in the brain. They’re the immune cells and they are related to the evolutionary adaptive sickness behavior where a lot of the symptoms of ME/CFS overlap with. A lot of our ideas are like something happens in the gut that then changes inflammation in the body, changes inflammation in the microglia, and that sort of causes a quick event to happen. Do you want to add anything Tamara?
Tamara: yes. This diagram is the Wizardry of Dr Tess Falor who put this together by hand, so every single link. There’s a couple different elements that I think are really key here. One is gut prep and gut prep is important both because we want to protect ourselves from the consequences of the antibiotics, but we also want to prepare the system for having the type of response that we want to have. Ken Lassesen from microbiome prescription and CFS remission helped a lot here.
What he did is he went into his database and he found out which resident bacteria were not affected by AmoxiClav, but were also probiotics and we could actually harness those to maintain a functional microbiome during the course of the antibiotic treatment. He suggested that we use clostridium and the probiotic 3 had a couple of species that were also appropriate. The Align you can replace that with other brands but the probiotic 3 was really interesting because it’s also a butyrate producer. The Tributyrin-X also helps increase butyrate directly.
So the gut prep is really Step One is protecting the system from the antibiotics and maintaining a microbiome. The worst thing that we can possibly do to ourselves as ME/CFS people and this actually happened to Whitney is his entire gut microbiome was destroyed at one point, and this was at his lowest health point, and getting that started required a massive effort from microbiome experts. So we really need to protect people from having any adverse consequences of destroying the gut microbiome but also prep the system to have the type of response that we’re looking for.
Tess: These we’ve had donated, we’ve had companies sponsor us, so like we said BiomeSight, the stool testing, ProdromeScan gave us their kits for free. Siphox health is how you pronounce Siphox Health are at-home blood tests. ImYoo is a really cool Immunology company that has these at-home collection devices too. Genova we’re thinking about the Organix test for organic acids. We have the blood lactate monitors, which are like the finger prick ones so we can do it as much as we want as often. Those were actually, those were made possible by our very first donor before we even started a GoFundMe. He offered a thousand dollars towards these lactate monitors and some of our other products so that sort of opened our mind to like, wow this community is amazing and people will actually help this happen and see our vision. Right after that is when we started our GoFundMe. The Dutch test that’s the one that Ciara really knows about. There’s a lot of interesting information that comes from that and she taught me all about it in our Zoom meeting. Doo you want to just quickly mention some of the things you can make?
Ciara: like what it covers? It’s a hormonal test primarily because we know that ME/CFS is more common in women and we don’t exactly know why. It also covers cortisol measurements and then it has a bunch of organic acids on it, so one of my questions was uh you know do we also need the do you also need the organic acids on top of this? If there was a choice between tests there because I actually don’t know what’s in the Siphox what is it??
Tamara: the Siphox is basic bloods (cbc)
Ciara: The other option was intestinal permeability you know markers. The BiomeSight is bacterial, looks great right, so the whole bacterial genome but it doesn’t cover intestinal permeability or inflammatory markers or anything in the gut. I was saying to Tess that maybe to get a panel of those and one of the ones we use is looks at Secretory IGA, β-defensins, and protection digestive markers things like that, bile acids. I have reached out to Invivo Healthcare to see what they could do. They are a b Corp, they don’t tend to run on big profits and things like that so they never volunteered to give away free tests, but at the same time I kind of went well if it was like three tests each it’s six is there any kind of bulk order discount you could do or whatever. I’m still waiting for them to come back I imagine the person I asked has gone off to ask someone else and has not got back to me yet but that would be a lovely add-on for the gut element, because obviously there’s a huge part of this
Tess: yeah this is another one I didn’t put on here they’re considering was Cyrex intestinal permeability. We have a lot of tests that we’re going to be able to do if this happens. We’re gonna be able to get good data from it and I imagine sharing it with a lot of different researchers seeing what people can find in the data and hopefully help us start to kind of narrow down the possible mechanisms and hypotheses. So yeah we’ll do a lot of these tests right before we take the antibiotics and then see what happens during, if we have an event and then after. During the acute phase. Tamara do you wanna?
Tamara: yeah I’m just gonna go back just for a second because a lot of people are asking questions. We absolutely will do some additional organic acids and we won’t use Great Planes but uh there’s a reason for that. We absolutely will do additional GI so the zonulin what Ciara is saying absolutely. We will incorporate either from Genova or from another company so those are absolutely key. The reason I’m really excited about the Genova Organix s isn’t isn’t because of the organic acids per se, they have a new version out of that test which actually tracks only the bacterial metabolites using Organix which is really unique. No one else does it and it hits exactly what we want to look at here which is the metabolic byproducts of the bacteria.
So if we go into the acute test, so acute phase of the experiment, we also added inulin as a great general prebiotic for the prep. During the acute phase of the experiment, we are going to take AmoxiClav and the choice of the antibiotic is very specific. Dr Phair mentioned specifically that uh that clavulanate seems to be a key in people feeling better following that antibiotic, so the antibiotic is really key. I had actually done some research previously which suggested that we didn’t need to do a 10 day or even a seven day course, so I think we’re gonna stick with a six day course here, but of course I had actually had a three-day course and I had stopped after three days on mine.
We’re going to continue with the prep phase of probiotics and prebiotics for the first three days and then on day four we’re going to start trying to shock the system into having this metabolic event, microglial event. We’re going to do this with a couple different things and we’re going to kind of add them on subsequent days, so that we can track if they actually trigger an event. On day four. we’re going to add the d-lactate free probiotic powder from Custom probiotic and they sponsored that, which was amazing. We chose species there specifically that didn’t produce histamine because we wanted to make this as MCAS friendly as possible. We also chose specific species or strains because they increase or they’re involved in tryptophan metabolism.
There’s some amazing online databases that we were able to use and sort of nail down specific strains of bacteria that were involved in creating propionate and other different metabolic byproducts. That’s why we’re using the d-lactate free probiotic powder. We’re also going to be adding in on a different day ketones. We’re not sure whether we’re going to go with Esters or salts yet but we want to create a ketosis environment. When I had my remission event I had taken this. I was taking this disgusting drink of ghee and MCT oil and BCAAs, because I couldn’t eat anything and so I was taking this like super high fat amino acid, you know medical food. I think that might have played a role so we’re going to try to recreate that a little bit.
The Akkermansia was a really great coup and having Pendulum along as a sponsor is just amazing. They have a their Akkermansia, I think there’s only one other company in the world that you can get it from right now and it seems to be a keystone species in humans and is also a butyrate producer and has a whole bunch of other potential positives and is really key for tryptophan metabolism, which is amazing.
Then we’re on another day we’re going to add in the L. reuteri. Now this one is a histamine producer so there’s definitely a caveat here that if someone has MCAS there could be a slight problem, but we chose L. reuteri specifically because Simon Spichek is that how you say his name? Tess I’m not sure how to pronounce it actually but also David Esteban.
Tamara: A number of our microbial experts suggested reuteri specifically, because it really really upregulates tryptophan bacteria.
Tess: So there’s ProdromeGlia. I’m just still sort of trying to think of what else we could put into shock the system
Tamara: So then we’re going to hit the system with as many microglial sensitive herbs and potions as we possibly can at this point. This is kind of like opening it up to just doing everything. There’s some new recommendations from Jarred Younger that might work and the Prodromeglia – anything that is involved in dampening down the microglial activation in the brain which may be the key behind the sickness behavior. I will stop there.
Then we go into a repopulation. It’s really complex mostly because we have really really done a number on our microbiomes, but we’re going to be using some amazing products. The one I’m most excited about using is Nella. I really messed up initially because I thought that Nella contained Veillonella, which was the species that massively increased in my own microbiome results, but it supposedly doesn’t. Fitbiomics is actually going to have a Veillonella strain available in about a year or two, so we’re really excited about that.
The reason I’m excited about Nella is that the three strains of lacto that are actually in it were taken from extreme athletes who do athletics in high altitude conditions. There’s some really good evidence suggesting that well not good evidence we know that strain is incredibly important in repopulating the microbiome. There’s even some really good evidence that sort of substrain is really key. The microbiome itself is gene transferring with the resident microbiota so the strain is just as important and we’ve definitely learned that without obesity and FMT research.
Glucose control is fabulous because most of us have insulin problems secondary to ME/CFS, so we’re going to be using that. Equilibrium is a soil probiotic designed by one of the heads of the human microbiome project. So that’s our repopulation protocol and we’re going to be doing this for three months to really ensure that we don’t experience any adverse consequences from the antibiotics.
Tess: And then like we mentioned a few times, we’re not the only ones that this has happened to. We have come across quite a few people and it’s not clear who all had the same magnitude of the changes we did. There seems to be a wide variety. A lot of people just generally feel better after antibiotics, but then we do have these really extreme ones like Shelly. I’m trying to see if Shelley was able to make it on the meeting .
Tamara: One of the things that is a priority for me is to get somebody like OrganChecm involved in doing an online poll – somebody who has experience doing online polls, so we can actually tease this out. A lot of people that have contacted us have felt better or slightly better after antibiotics, but we found very few people who’ve had what we considered the same event that we’ve had. We want to try to tease those apart and so getting together with a psychologist who’s actually experienced in doing that type of psychometric testing would be really key, and then getting somebody who has the reach like OrganChem online to run a poll for us. If anyone knows of anyone in those areas that could potentially help us, because creating this, a number of people have helped sort of promote this so that we get anecdotes, but we really need to take that into quantitative data and a poll is really the only way we’re going to be able to do that.
Tess: You will notice that OrganChem also had one of these events. She said for 15 minutes she felt like she was normal. So fascinating to me that she happens to be one of the ones and it’s not clear if she had the like really intense experience that we did but still 15 minutes of feeling like she was in complete remission. Shelly, do you want to really quickly describe your son’s experience because I feel like she’s the one that I’m like, this is it, he had the same experience that we did. She said things like it was like the Awakenings movie. He was able to jump on a trampoline. Shelly, do you want to jump in here and just quickly describe it?
Shelly: hi I apologize that I’m in the dark here but it’s pretty early in the morning in Australia and also my son can’t really sort of speak to it himself, because he was around about 15 when this happened he’s now 20. His memory of it in fact his memory of that whole period is not great.
My son was a typical story. He was very athletic, very involved in every single club, very busy boy and then had glandular fever, but the the actual just slipping forward to that event that was just by way of saying that he had very many ups and downs.
At his worst he was mostly bed bound and his brain fog was incredibly bad so around about the time that he had the antibiotics, he had his birthday. I’d bought him his favorite football jersey. He couldn’t sit up for it so we just put it on him while he was lying down and so just to give you a picture of how severe he was. We had been at that stage. He’d been diagnosed with POTS as well as the MCAS and he had recently started on some things for the brain fog and they said to me if anything goes you know if he has any thing that you’re worried about you know go straight to ED and he did have mouth ulcers, one of which got infected and we did he started getting a bit of tongue swelling so we took him into ED. It was a fairly regular place we had been for him and they just put him on standard antibiotics.
It was that week after that we saw this incredible difference in his ability to get up and move around. I have a little bit of difficulty looking at the timeline. He also, you know, went off gluten and definitely had a really big improvement at the time. He went gluten-free in the six months after that but I don’t think it’s near that week.
I can remember yeah being absolutely astounded about him, the activity level from where he was and said to him what’s going on? He said oh it just feels so much better and we talked about at the time we didn’t put it down to the antibiotics. We wondered if it was the immune challenge just that his system you know actually had something to distract it. We had heard of other people that had slight improvements after they caught a bug. He didn’t actually catch anything during this whole period of around about five years that Ethan was at his worst. He stopped catching any kind of infections so antibiotics was a fairly rare thing. But yes unfortunately I can’t pin an improvement of a baseline to him, but for that definitely my memory of the period was that you know that kind of whole first week he was much improved and he was smiling and he was moving about.
I was terribly more upset worried when he hopped on the trampoline, but you know he was actually okay for that period. It was like his PEM had disappeared,but you know just gradually he went back to normal. We didn’t really think that much of it, until you know it was kind of I did ask a doctor. I do remember mentioning it to a doctor and they you know, usual shrug the shoulders.
t I’ve been very active on Twitter obviously following all the research, Robert Phair and attending all the conferences and everything. I’m a journalist. I do a lot of research. I just wish I had a little bit more paperwork for you. I did a lot of note taking through lots of the period but it’s been over eight years for us now so and my son’s not that severe now but it was LDN that improved him that he’s moderate.
Tess: Isabel do you want to jump on?
Isabel: yeah sure, thank you. Hi everybody my name is Isabel Ramirez Burnett I am a board certified health coach. I met Tess about three years ago through the ancestral health and for me this remission events happened several times. The first time was with Levaquin and the first time it happened. I just chalked it off to you know being ill with the infection itself and that it got me better, so that’s what I thought that first time.
Then the second time was markedly different. That was with Augmentin and the reason why I started to think the two had a correlation was because they were close together. I’m always very keen on what happens to my body. I’m always paying attention, so I was like wait wait a minute I got you know better after the last antibiotic and with this particular event I had lots and lots of energy, way above my baseline, almost no pain. I don’t remember the colors being brighter and and that type of thing, but I used to be a person who really put those things in the back of my head, somebody who lived very much inside my body and not you know nothing esoteric or spiritual. I really didn’t pay attention to those things.
Then it happened several more times and each time my baseline was improved, but then I started to learn a lot about the microbiome. I started to learn a lot about antibiotic resistance, so I didn’t want to you know mess with antibiotics anymore, because of that. I went a very long period of time without any, but that had always been in the back of my mind going back and forth from oh did that have anything to do with it? Am I just crazy you know? Is it possible?
That’s until recently when I don’t know how Tess and I got on the conversation. I said wait a minute, that has happened to me before. Our events were slightly different but you know definitely a great improvement. It’s hard to think bad but they were at least a full day I remember a couple being more like two maybe three days and you know being able to do things like go down the stairs on a pillow with my kids and not feeling the the intense pain when somebody hugged me and and things of that nature so yeah it’s just this is just amazing and so interesting.
Tess: That just reminded me so we talked to a clinician and she said that she’s seen this happen a lot. She didn’t tell me like exactly how much but she was like this is well known. She’s also in a group of other ME/CFS clinicians and she said that people people talk about it. She said that she’s seen it happen with ME/CFS, Long covid, Gulf War syndrome, and traumatic brain injury, so question for you Isabel. I know you have hEDS but you don’t have any of those other conditions do you?
Isabel: No I don’t, I have Chiari and narcolepsy, but none of the others yeah.
Kathleen: I’ll just share my story really quickly and then I have a question. I’m also a mosquito born initiation of a disease. I’m West Nile Virus neuro-invasive West Nile Virus which I got in Toronto in my backyard, but I had worked in humanitarian aid all through Africa and Asia before that not gotten anything.
So I slightly recovered from the West Nile but you know still had these periods of great fatigue and after a couple of years I got terrible respiratory infection. That was the real downward sort of spiral into ME/CFS. I’ve been doing advocacy for West Nile a long time here in Canada during that time. I found a doctor who really searches out viruses and infections in people and I found out that I had chlamydia pneumonia in my lungs, also that I had H pylori. I haven’t been able to get rid of the H pylori and this is where the antibiotics came in, because from the West Nile I was on anti-virals for 18 months, but once I went on the antibiotics for the h pylori then I noticed that I felt better after them and my baseline was slightly higher than it was before.
It gradually dropped down and then my second round of antibiotics she added an anti-parasitic and I went up again. I was good for a month or so, it’s just slightly gone down. I just had DNA PCR done for h pylori and I have systemic. It’s throughout my body, so now I’m starting tomorrow on Amox and not Clav but Clarithromycin. Then I found you guys, so if I had known a bit earlier about this I could have sort of done the pre-stuff, but I need to start on this. So that’s my story.
My question is about the gut biome and the antibiotics. What about PPI’s with this whole protocol of yours? Have you considered those or no? Can you expand a little bit on what you think would be going on there? I’m just thinking that the for the antibiotics from what I understand and I’m a nurse I’m not a scientist, what I understand for h pylori is that the antibiotics are better absorbed through the gut when you have it when you also take a PPI half an hour beforehand.
Tamara: That is something I have not not considered. This is really why we need to get more clinicians on board in terms of our protocol. Tess and I do not have MDs and we do not have the training, so you know we are in touch with a few of those people, but it’s one of those things that they read the protocol and go oh that’s great all good yeah. We really need some clinicians who have experience to drive some of those specific decisions. We should be optimizing right and if a three-day course plus a PPI is safer than a 10-day course we need to know that.
Kathleen: I only know it in the terms of H pylori but I will flip you the studies that I’ve seen about adding in a PPI for antibiotics and H pylori just so you have an idea.
Tess: Anybody else want to jump on and ask any questions ?
Tamara: there’s a lot in the chat do you do you want to answer that afterwards or should we look at some of those now?
Kathleen: I have one more question. Tamara you’re in Canada are you? How are you doing any of the testing that has to go to the U.S.? Is is it okay? You’re able to forward it to the U.S all right?
Tamara: There’s actually no problem at all. You generally can send many tests back just through the regular mail. The BiomeSight goes back through the regular mail and blood tests go back through FedEx in a biological, so you have to Courier it. But yeah I’ve never had an issue and I’ve done that many times before.
Tess: We’ve gotten so much support from the community. It’s really been amazing. I would say I’m shocked. We’ve had people offer up their skills, donate to us, all the scientists that we have reached out to have been happy to do Zoom meetings with us. So for anybody else that does want to get involved and help us, we are still collecting money with our GoFundMe. Feel free to DM me on Twitter. They are open.
I’m always happy to talk to people and hear more anecdotes or ideas or you can email me if that’s easier. I just created an Instagram account. It’s the same @remissionbiome and I created a Facebook page. After this when I post the recording I’ll send out some links. I have everybody’s emails through the registration so I’ll include that Facebook page link.
Tamara: Is anyone an Instagram wizard? We would love somebody to take that Instagram page as their own and help us promote it. Social media actually takes an incredible amount of time, so this type of volunteering is key. I also am just I’m overwhelmed with gratitude
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