Join us for another joyous installment with the incomparable Sascha Alexander. Remember that time she thought she had toxic mold, in addition to interstitial cystitis, candida, and Hashimoto’s disease? Well, guess what? That toxic mold ain’t so moldy…it’s Lyme! Lauren sits down with Sascha to find out how she was ultimately diagnosed, and how she’s increasing her detox protocol to rid her body of one of the most insidious of invisible diseases: the tick-born illness, Lyme.
Key links mentioned in this episode:
Listen in as Sascha shares…
- that the detox protocols she had begun 5 years ago to treat toxic mold have actually given her a leg up on Lyme treatment, as some of these protocols overlap (infrared saunas, antibacterials/antimicrobials, coffee enemas)
- that she is now working with the same doctor Lauren works with for her thyroid: Dr. Lisa Hunt at Holtorf Medical Group
- that the more updated protocol for treating Lyme is to boost one’s immune system, rather than to deplete it entirely with long-term IV antibiotics
- that Sascha’s current treatment regimen includes ozone therapy, peptide therapy, and FMT (fecal microbiota transplantation)
- how Lyme works: it survives by destroying the inter- and extra-cellular nervous systems
- that Lyme and syphilis are both spirochetes, and can look similar under a microscope
- the different tests used to diagnose Lyme
- the gold standard for Lyme testing in the US: iGeneX, which is even more accurate and detailed than the Western blot test
- that Lyme thickens blood cells with biofilms (almost like an exoskeleton around the cells), and the biofilms need to be dissolved before treating the infection; this thickening of the blood is similar to HIV infection, as well
- Lyme is known as the “great imposter” because its symptoms can mimic, and it is often misdiagnosed as, one of the following: rheumatoid arthritis, lupus, MS, ALS, Parkinson’s, fibromyalgia, and CFS/ME
- her recommendation that anyone with symptoms related to RA, lupus, MS, ALS, Parkinson’s, fibromyalgia, or CFS/ME also seeks out the assistance of an LLD, or Lyme Literate Doctor, to be thoroughly tested and rule out Lyme as a root cause
- that band 58 of her Lyme testing was the definitive indicator of her infection
- the relief and vindication that came with her definitive Lyme diagnosis
- that Lyme may be one of the worst diseases of all time, BUT it’s curable
- that Lyme causes autoimmune diseases – which may include her Hashimoto’s disease diagnosis
- that her current protocol is being undertaken in steps. First, she has to kill the Lyme in her system; next, she has to repair the damage the Lyme has done to her immune system
- that her doctor recommended stem cell treatment, but it’s very expensive and she finds her current regimen is working well
- what a fecal transplant (FMT) is, how donors are selected, and how it works – including all the dirty details!
- that C. diff (Clostridium difficile) is the only infection for which FMTs are currently FDA-approved; so FMTs are difficult to get a hold of otherwise, unless you find a doctor willing to help
- what distinguishes Bartonella and Babesia co-infections in Lyme
- how ozone therapy works: using O3, it kills pathogens in your blood on contact
- the healing process of Lyme: patients tend to get worse before they get better, and the die-off period during which they feel worse (generally flu-like symptoms, because the die-off releases toxins in the body) is called a “Herxhiemer reaction”, or Herx
- the process of being more “seen” by others since she got her Lyme diagnosis – because her network understands this diagnosis more than they did the previous ones
- how she has allowed her illness experience to change her for the better: she has learned self-compassion, and to ask for support with acceptance and grace
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Lauren: All right guys, thanks so much for joining us again today. I am here with an old favorite of ours, the lovely Sascha Alexander.
Sascha: Can’t get enough!
Lauren: Oh, we can’t! Sascha, thanks so much for coming back and talking with us. You have an update for us, which we posted with the episodes that we already have put up for you. But why don’t you tell us what’s going on? You’ve got some updates!
Sascha: Well … !
Lauren: Drum roll, please!
Sascha: I have Lyme disease! One of the worst diseases in the world, and I have it! (laughs)
Lauren: And FYI, we’re havin’ a little dance party! (laughs) So, do you still have all the stuff you were dealing with before?
Sascha: I don’t have toxic mold.
Lauren: So you were mistaking Lyme disease for toxic mold?
Sascha: That’s exactly right. And they often come together, but I don’t have both — which is a huge relief. Because I’m actually recovering really quickly compared to a lot of Lyme patients. And it’s partially because of everything I had already done for the past five years; and it’s partially because I don’t actually have as many of what they call co-infections as other people, and toxic mold is an example of a co-infection. Apparently ticks are filthy … who knew?!
Lauren: Well, they are disease-carriers. So I feel like yeah, they’re probably pretty filthy!
Sascha: Yeah, they’re repulsive.
And so when you get bitten by one — if it has Lyme (and not every tick does, thank God) — it usually also has some combination of other infections. And in the tick-borne illness world, we call those co-infections. And the reason people are starting to call Lyme a tick-borne illness instead of Lyme, is because that’s actually more specific. Because generally when people get really sick with “Lyme”, it’s because they were given multiple infections by this tick. So it’s not like you just have Borrelia, which is the Lyme bacteria, you also have some parasites and some fungal infections and all of this stuff.
So what they found in me is just Lyme and candida.
Lauren: We knew you had candida. We knew you were pretty yeasty in your gut, right?
Sascha: Yeah, exactly. And then … and this is a little bit more confusing … but I think I also have Babesia, which is a co-infection that didn’t show up on my blood labs, but my doctor said: Negative doesn’t mean anything; positive means positive. And so she said, “Even though both of these Babesia tests were negative, from what you describe, you probably have that.”
Lauren: So they’re treating that as well, they’re treating what they’re seeing instead of just what the labs are telling them?
Sascha: Right. Luckily, I’m with a medical group that treats Lyme …
Lauren: You’re with the same doctor as me!
Sascha: Yeah, I’m at Lauren’s doctor! And they treat Lyme … I guess I was gonna say, holistically, in that they boost your immune response. So it’s going to kill any infection I have. As opposed to, ‘Here, take this anti-parasitic drug for Babesia, take this antibiotic for Lyme.’ That’s the old model for treating tick-borne illness. Although some people still do it. I don’t recommend it.
Most people that have Lyme are so sick by the time they get diagnosed, the idea of putting them on, like, two years of antibiotics that will just fu*k their gut up and make their immune system so much weaker, I think is a terrible idea.
My doctor doesn’t do that — which I appreciate. So basically what I’m doing is ozone therapy, peptide therapy, and a fecal microbiota transplant (FMT).
Lauren: I love when Sascha’s on the show, because we talk about butt stuff! (laughs)
Sascha: That sounds really sexy — but it’s not! Although actually, in a weird way, I get so, like, erotically excited about my treatments. I’m, like, ‘yes, yes!’ (laughs)
Lauren: (laughs) Because the idea of being well is so exciting!
Sascha: I get, like, a hot flash thinking about it! Those hot flashes from last time? Those are Babesia!
Lauren: Oh, my goodness. So it wasn’t related to your T3 dose, like we thought?
Lauren: You weren’t on T4? And you have Hashimoto’s? That’s cuckoo bananas. I’m so glad she put you on T4. Guys, for those of you who don’t know, T4 is Synthroid. So, if you have hypothyroidism in any form, whether it’s autoimmune or not, it’s very likely — 99.99 percent — that you’re going to end up on Synthroid, which is the synthetic thyroid hormone, or a compounded version of it.
Sascha: But it also isn’t the best for everybody.
Lauren: Well … but doesn’t everyone have to be on it?
Lauren: Oh! I thought everyone ended up on T4, and half of us end up on T3 as well to support the T4.
Sascha: Well, the reason I was taken off T4 was because I wasn’t tolerating it very well. It was plunging me more hypo. Because when you have Lyme, which I have, you also have something called a high reverse T3 usually — which means that your liver can’t convert T4 to T3. So if you take additional T4, you can actually become more hypo, which was happening to me. But I think in the interim, I healed enough that I was able to tolerate the T4, so my thyroid dose is now much more appropriate. But we’re also treating Babesia, so it’s hard to say. I think the T4 ended the hot flashes, and just really helps with my bloating. I’m now testing normal on the thyroid muscle reflex test, which is unbelievable. But I also think Babesia had something to do with it, because even once we changed my dosage when I was first getting ozone and killing a bunch of stuff, I would have sweat-it-out hot flashes in bed — and those have stopped.
Lauren: Amazing. It’s part of the progress through your body. Okay, so let’s step back a minute. Tell us what Babesia is. Tell us what Lyme is.
Sascha: Okay, so Lyme is named after a town in Connecticut called Lyme, where it was first discovered. People say Lyme’s disease a lot; it’s Lyme, like the town.
And it is a spirochete, which is spiral-shape bacteria that is very difficult to treat because it changes form.
There’s a cyst form, there’s a spirochete form, and then there’s some other form that honestly I haven’t even educated myself about — because I’m just treating it, we know what it is. Basically there are three forms, which is why it hides in your immune system really effectively. The reason it’s so destructive is because it survives by attacking your immune system, kind of like HIV. So people that have HIV, it’s a virus that starts to disable their white blood cells. Lyme is a virus that starts to destroy your inter- and extra cellular nervous system, meaning between the cells and within the cell. I’ve had Lyme for 25 years, so at the time mine was discovered, the reason I could never fight the candida — which is actually a pretty basic infection; candida is not difficult to treat …
Lauren: That’s a yeast gut infection, right?
Sascha: Exactly. It can be gut, it can be skin, it can be on your tongue and be thrush, it can be in your butthole and make your butt itchy.
Lauren: I told you we were going to talk about butt stuff! (laughs)
Sascha: (laughs) And the reason I couldn’t get off anti-fungals, we now understand … this was so exciting to discover … everything fit together once I figured out I had Lyme.
The Lyme had successfully disabled my natural killer cells — which is a really important part of your immune system.
That’s the basics about Lyme. The reason it’s so hard to diagnose is, there’s another spirochete infection, which is syphilis. So sometimes, if you have the spiral-shaped bacteria found in your blood, they’re going to assume it’s syphilis. That’s one reason.
Lauren: Which is a lot easier to treat.
Sascha: Totally. And also, the CDC has different guidelines for diagnosis than what most people clinically present. So for example, a Western blot is the Lyme test that confirms or denies that you have Lyme. It’s a blood test. It’s called the Western blot for whatever reason, and they test something like 13 different bands, which is what they call the different kinds of antibodies that you have against it. So they test for Lyme by seeing if your immune system has formed an antibody against Lyme.
You need to have formed, according to the CDC, five different antibodies to really prove you have Lyme. According to my doctor, you only need three. And I have three.
Lauren: Oh, interesting. So if you were going to a doctor who wasn’t a functional medicine doctor, they might be like, “No, you don’t necessarily have Lyme.”
Sascha: 100% they would. In fact, I took the iGeneX, which is the kind of gold standard Lyme lab here in America — it’s in San Francisco, I think Palo Alto. And there’s one in Germany that people send their blood to. But there’s only a couple of labs in the world that, if you want to be absolutely sure, get tested at this lab. So I did the iGeneX because I had been in the chronic illness world for five years; I knew that if I wanted to rule out Lyme, it had to be the iGeneX. And even the iGeneX came back saying I was indeterminate for Lyme. So my other doctor, who I love and trust, was, like, “You don’t have Lyme.” And I said, “Let me see it.” And I took it to the Lyme doctor, and she said, “For us, this is a positive Lyme diagnosis.” And she tested me with a regular Western blot, and that whole thing was negative. So the iGeneX found it, the normal Western blot didn’t … and she said, “We’re going to go with this iGeneX, especially given these other markers you have.” I had an incredibly high C4A, which is an inflammatory marker. And I had biofilms in my blood.
Lauren: Okay, what are those?
Sascha: So the way that Lyme survives, and candida, and actually almost all infections, is they form these little exoskeleton shells around themselves, made out of minerals from your body, that keep your immune system from getting in.
Lauren: Acting like a shield?
Sascha: Yeah, so if you’ve had an infection for a long time, your blood actually gets thick with these. They’re, like, floating around in your blood. So there are five different kinds of biofilms they can test for, and I had two out of the five. So she said, “Your blood’s pretty thick.” So anyway, I don’t remember exactly what mine were. But I had to start taking something called a biofilm buster, which are enzymes that dissolve these biofilms — before I was able to kill the infection. So basically, I had a positive iGeneX ultimately … even though iGeneX said that it was indeterminate, my doctors say it’s positive. And then on top of that, I had all these other markers in my blood that were even more significant.
Lauren: And it’s worth noting also, that the doctors who you’re seeing … the doctor who runs the practice has Lyme as well. And has had it for seven or eight years, and is really at the forefront of a lot of treatments for Lyme.
Sascha: Yes. That’s right. So what was definitive for me was, my natural killer cells were down to 4 … you’re supposed to have 30 to 120. So basically the Lyme had devastated my natural killer cells. My C4A was extremely high, which is an immune marker to see how hard your body’s working to fight infection. It can’t identify what the infection is, but I think normal is up to 200; mine was 25,000.
Lauren: Oh, my God.
Sascha: Because Lyme is a really serious infection. So your body’s trying to get rid of it, for years. I also have those inflammatory markers in my gut, by the way. My beta-glucuronidase is 40,000 or something. And then, the biofilms. So once we found that, she said, “This is unquestionable. You have this and you’ve probably had it for a long time, given the state of your immune system.” And I was so excited, because I had been looking for this final piece! The last time I was on here, I thought it was toxic mold because I was improving on anti-fungals. But it seems as though the candida, that would overgrow because of the Lyme, would give me a lot of my symptoms. So it’s like those anti-fungals were controlling that. And then, I also think that once I lowered the burden on my immune system, it was able to better fight the Lyme. I think that if I’m on anti-fungals and the candida is controlled, the immune system then probably had an easier time going after the Babesia and the Lyme. So these are my working theories. What’s interesting is, there’s a lot that we don’t know still.
Lauren: I’m going to swing back around really quickly … tell us what Babesia is, because I don’t think we covered that.
Sascha: Oh yeah, so Babesia is actually a tick-borne parasite that lives in your red blood cells and under-oxygenates your body.
So that air hunger symptom, when nobody knew what it was? It’s Babesia.
Lauren: It makes so much sense.
Sascha: Yeah, and one of the reasons I thought about Lyme in the first place, about two years ago … I thought I had ruled that out at the time, but I hadn’t …was because of that symptom. That air hunger is so unusual, and it shows up in Lyme people. So if you have air hunger and you’re, like, ‘What the fu*k is going on in my body … ??’
Lauren: It could be Lyme.
Sascha: If you have air hunger, Lyme is something to double down on. I will say, I was the first one to discover that air hunger might be connected to Lyme two years before I committed to really figuring it out.
It takes some time; Lyme is called ‘the famous imposter’ because often it looks like rheumatoid arthritis or lupus or MS. Or ALS or Parkinson’s. If you have any of those five diseases, make sure you don’t have Lyme. By which I mean, go to iGeneX. Go to a Lyme-literate doctor.
I was talking to other people, and they’d say, “Oh, I had that. And now I’m fine!” Or, “I don’t even treat it anymore.” I was, like …what??
Lauren: It’s a mixed bag with Hashi’s, I find, too, though. I was also a lot sicker than other Hashi’s patients because I have sleep disorders, too. Because my main symptom was fatigue, that was ramping up even more, because of the sleep disorders. So I think it really depends what other stuff you have going on. And when it’s not just one thing, that just makes it that much more complicated to treat and to diagnose.
Sascha: Oh my God, 100%.
Lauren: But I think, what we’re getting to the bottom of here is that most of us probably have more than one thing going on.
Sascha: Oh …
Every autoimmune patient has toxicity and infections, unquestionably. That’s why we have autoimmune disease.
That’s why my system works. The six root causes … it’s never just what’s on the surface, right? And so I happen to have a huge untreated root cause — which is why I’m improving so much now. As soon as Lauren saw me when she came in, she said, “You look so healthy.” And I’m, like, “Yeah! I’m starting to look so different.”
Lauren: So speaking of treatment, tell us what is involved in treating Lyme.
Sascha: So the classic way to treat Lyme disease is IV antibiotics, for years. I was very clear I didn’t want to do that, because I already had this sense that over-treatment with antibiotics is one of the reasons that I was so sick in the first place.
Lauren: Quite possibly, yeah. We’ve talked about that.
Sascha: One of the questions my mom asked when I first got diagnosed with Lyme … and I thought it was such a good question … was, “Sascha, if you were on antibiotics for two years at age 10, why didn’t it kill the Lyme?” And I thought, ‘What a question!’ So I took it to my doctor, and she said, “Well, you have to be on a specific trio of antibiotics.” It wasn’t the antibiotics. So I just think that’s worth saying. Anyway, so the way I’m being treated is, like, two-fold …
I need to kill the Lyme that’s in my body. I also need to reverse the damage the Lyme did to my immune system.
So I’m on peptide therapy — which we can get into; you might have already shared about it because you do it?
Lauren: No, I haven’t actually. So, we both do it, but we’re doing different peptides — but the same way of doing it. And for me, it’s been gut-clearing. And for you …
Sascha: It’s been immune rebuilding. And also my doctor recommended stem cells. I’m not going to do them, probably. Because they are so expensive, and I probably don’t need to because I’m getting well really fast.
Lauren: But it could be something down the line, if you have a flare again?
Sascha: 100%. If I get $20,000 to spend on my Lyme, which I mean, eventually I will, right? I can choose where to spend that. I might go to Panama and get stem cells! Panama, because you can get more and better for the same price.
Lauren: I’ve heard Germany is also really good.
So for the immune rebuilding, just so your audience knows, stem cells and peptides are what do that. And then to kill the Lyme, I’m on an ozone blood treatment that I do once a week. I’m also on some supplements to increase my immune system.
I’m on something called Gamma Protect, which is bovine IgG — which actually I was on already, for a year. Do you see what I mean? I was kind of treating the Lyme by accident. Anyway, I’m on Gamma Protect, and also on something called Transfer Factors, which have medicinal mushrooms plus beta-glucan, which they sometimes give people for cancer. So I have some oral supplements I take to increase the immune system, but the heaviest immune system stuff I do are the peptides. So you were asking about peptides, right?
Lauren: Yes. So, you’re injecting peptides?
Lauren: And for those who aren’t familiar with these peptides, I actually take one orally and then inject three. That’s what I do. And it’s five days a week — five days on, two days off; four weeks on, one week off. In a five-week cycle. So I don’t know if yours is the same?
Lauren: Okay. And basically, they give us these little insulin [sized] needles and you just take 30ccs and you stick that right in your belly and squeeze some some of that belly fat and stick it in.
Sascha: I was surprisingly chill! My sister was visiting … because once we found out I had Lyme, my family came down to support me because it was like, “Oh, my God, we cracked the case.” And also, this is a really serious disease. So my sister came to spend a weekend with me, and she was here when I did my first injection. I was holding this needle, and I would put it next to me, and I was, like, “Rach, I can’t!!” It’s just so weird to stab yourself with something; it’s the opposite of what you want to do. But after she did it, I was, like, “Oh, that was literally nothing.”
Lauren: Yeah, because they’re such tiny needles. It’s just a little tiny prick and its done. And sometimes I don’t even feel it actually.
Sascha: I know. I find I poke around and find a spot.
Lauren: So that is one thing you’re doing. What else are you doing in terms of therapies?
Sascha: So I was recommended for a fecal transplant because of my recurrent candida.
Lauren: And that is?
Sascha: So … a fecal transplant is when somebody with a healthy microbiome — meaning a healthy colony of bacteria in their gut, and the way you know they’re healthy is because they have no acne, no history of autoimmune disease, no chronic infections. Also, they tend to choose people that are very physically fit and active, because there is a connection between gut biome and obesity. In rats, if they take the microbiome from an obese rat, and put it into a skinny rat, the skinny rat will become obese. So the people who are donors, who are literally donating their feces … they’re donating poop … they test the stool to make sure it doesn’t have infections, of course, but they also grill the person about their medical history. And so they can’t have taken antibiotics for the past 10 years or something. And then on top of that … I think I hit the main ones — no autoimmune disease, no acne, I’m sure there’s a ton and you can look it up. So I have been desperate to handle my candida for years. And so when my doctor suggested this, I was, like, “Yes, please, I’ve been wanting to!” But it’s difficult to get one unless you have an infection called C.diff, which is a deadly infection of the gut — which is the only thing that fecal transplants are technically FDA-approved for. So in chronic illness world, there are all these people going rogue and finding poop from their friends and getting it into their butts!
Lauren: Which, let’s just say … not a good idea, guys!
Sascha: Not a good idea!
Lauren: That’s not how you do it!
Sascha: Exactly! I was on these message boards, being, like, ‘I’m not going to do this. I’m not going to get poop and mix it in a blender with saline.’ I was, like, this makes me want to die hearing about it. But, I did find, through those message boards, a doctor in Santa Barbara who was willing to treat me, even though I didn’t have C.diff. I’m not going to share his name because I want to make sure I protect him. But, he did change my life.
Lauren: Did you have to go to Santa Barbara to get the treatment, or did they send it to you?
Sascha: No. I did a phone session with him, and I sent him my stool results for the past six years. Because basically we can show that I’ve had something called persistent dysbiosis —meaning, my gut diversity is really, really low. I don’t know these actual numbers … I want to be clear about that …but imagine you’re supposed to have, like, 40,000 different species of bacteria in your gut. I have, like, 5000; I think even less. Very, very low diversity and overgrowth, consistently, of ones that cause autoimmune diseases. And for years, we had done anti-bacterials, herbs. We had done tons of probiotics; I’ve even done probiotic enemas, where I had put probiotics up into my colon. Nothing would take. So I’m kind of like a perfect candidate for a fecal transplant, even though there are really small risks inherent in it that I could get something from this person … it would probably be better anyway.
Lauren: And luckily you went through a professional, to do it the right way — which I would say is the way to do it.
Sascha: Oh, my God, I cannot recommend that more. I think only if you really can’t — either financially, or you just don’t have access … I had five transplants overnighted to me from Portland from a stool bank called Microbiomes, LLC … big shout out to Donor L1 and Donor J1, who gave me their microbiome! It came frozen in dry ice; it was like one of the coolest science experiments! I’ll send you pictures to post if you want.
Lauren: Yeah, that would be awesome! So what do you do? You just stick the poop up your butt?
Sascha: Yeah, you thaw it in the morning. There’s a preparation.
Lauren: It’s got to feel uncomfortable!
Sascha: No! It was fine! I mean, I had been doing enemas …
Lauren: Yeah, so you’re used to sort of dealing with that area!
Sascha: Yeah. I would say the most uncomfortable part was … you do a 21-day cleanse of your gut, which actually was fine … it was just taking ozonated magnesium citrate to loosen any old fecal matter … you just have to be as clean as possible.
Lauren: And magnesium citrate being a laxative …
Sascha: The day before the transplant, you have to fast and then get a colonic. None of that was fun. That was the hardest part. The next morning, five mornings in a row, you take an implant out … they call it an implant …you thaw it … it’s just poop, it’s poop mixed with saline … you thaw it for an hour. It comes in an enema bottle, totally done for you. Then you lay on the bathroom floor and squeeze it all into your butt over five minutes, and then lay there for half-an-hour and massage your colon and let it sink in. Then you wait an hour to eat — and I did that five mornings in a row. By the second day, my skin completely cleared. My bladder pain vanished, within hours. I started drinking coffee, which I could not tolerate … and you know coffee is my favorite thing, and I couldn’t tolerate it with my bladder. It’s like I’m living in a totally different body. I also lost four pounds of bloat. I’m wearing a different pants size.
Lauren: Yeah, when I last saw you, you were, like, “Do you want these clothes? Because they don’t fit me anymore.”
Sascha: Because I had new poop, because somebody gave me their microbiome! So the microbiome’s incredible. I’m probably going to do another round when I get some more money in.
Lauren: None of this is covered.
Sascha: Oh, no, no, no, this is so experimental. My doctor recommended I do 10; that would have been $5,000. I decided to do five for $2,500 and see how it went. I’m probably going to do another five in another six months because it was so successful. I still have some lingering stuff that I would like to kick to the curb.
All my bladder pain is gone. I remember on my third transplant day, I was weeping because living a life without urination pain is, like, beyond. The only thing that’s left for me is, I still have some pressure and urgency. But even that, it’s, like … I’ll go an entire day. I went to an entire play and I didn’t pee for six hours the other night. It was astonishing. I was texting my boyfriend: “These results are astonishing.” I can’t believe somebody’s poop is going to give my life back to me.
Lauren: It’s so simple when you really think about it, isn’t it?
Sascha: So simple.
Lauren: I also want to swing back around, because one of the things that you mentioned earlier on — and this is totally unrelated to fecal transplants now but more related to the Lyme — was that Lyme and syphilis look very similar under the microscope.
Sascha: Yeah, they do.
Lauren: So how do the doctors determine that you have one and not the other? Because they’re contracted so differently, as well. And the treatment, I imagine, is very different for them both.
Sascha: Well, I think under a microscope, you can’t tell the difference. First of all, you can’t get diagnosed with Lyme with just one Western blot band. So if you just have the syphilis band, you wouldn’t get a diagnosis even from my doctor, who’s very, I guess, open-minded about who might have Lyme and who might not. I think also, the other inflammatory markers in your body would be really different. Syphilis, I don’t believe, attacks the immune system in quite the same way.
Lauren: I think it affects the brain more? It’s more of a neurological concern.
Sascha: That’s a good question; I don’t know if I’m qualified to …
Lauren: But the point is, you don’t have syphilis.
Sascha: I don’t. But you’re right; before syphilis was well treated, people would go insane. There were four stages of syphilis, and at the end they would go bonkers.
Lauren: Well, it is fatal if not treated.
Sascha: Such an interesting question. Lauren, I don’t know. You should ask Dr. Hunt!
Lauren: Well, it sounds like maybe under the microscope they actually can tell the difference; it’s just that it’s spiral-shaped.
Sascha: They’re both called spirochetes, yeah.
Lauren: And maybe one has a few extra tails or something.
Sascha: I have no idea.
Lauren: Yeah, but she didn’t, at any point, say to you, “Are you sure you don’t have an STD?” (laughs)
Sascha: (laughs) I also don’t think syphilis creates biofilms in that same way.
Lauren: Right. Okay. And you had a ton of other markers that were obviously Lyme.
Sascha: Yeah, the bladder stuff, the breathing stuff, the health of my immune system. All of it is really significant. And I think it’s important to talk about too, because a lot of people listening are probably undiagnosed. One of the reasons that my Lyme was so hard to figure out is because I had some sort of mucous membrane line that affected mostly my gastrointestinal tract, my bladder, my throat.
Lauren: So one of the things we spoke about when we weren’t recording was Bartonella. Can you talk to us a little bit about Bartonella and how it’s related to Lyme?
Sascha: So this is connected to how I said my case of Lyme looked really unusual.
A lot of people that have Lyme have a co-infection called Bartonella.
It’s the same thing; you get bitten by the filthy tick and it has Lyme and Bartonella in it. When I was just health coaching and not knowing I had Lyme, what I thought about were “Lyme symptoms”. So they’re, like, intense anxiety and OCD. Insomnia, which is a really classic Lyme symptom, is usually connected to Bartonella; one of the reasons I thought I couldn’t have Lyme was because I didn’t have insomnia. And I’m not neurologically insane, right?
Lauren: Well, as far as you think! (laughs)
Sascha: (laughs) I didn’t have all the tingling and burning; a lot of Lyme people have a skin crawling or burning sensation.
Lauren: Or tics, muscular tics.
Sascha: Yeah! Or muscular pain, like fibromyalgia —which is another one of those that is often Lyme.
There are actually six diseases … fibromyalgia and chronic fatigue syndrome, Parkinson’s, ALS, MS, lupus, and rheumatoid arthritis. If you get any of those, you should get tested for Lyme.
Lauren: Just to rule it out.
Sascha: Just to rule it out. Anyway, so that’s all Bartonella. So here I am … I have these bladder things, I have this weird air hunger situation. I had chronic fatigue, which is very Lyme-y, but it had mostly been handled because I had done so much work. And it wasn’t until I heard this podcast [episode] from an LA doctor called Dr. Rahbar, who’s an integrative gastroenterologist, and he did a podcast which I can post with this if you would like.
Lauren: I would love that, yeah.
Sascha: I had never heard something that sounded so much like me. It was about SIBO and when SIBO overlaps with Lyme disease … and when he has recurrent SIBO patients that also come in with this very specific set of symptoms that sounded exactly like me. He said, “When I see this, I send these people to Lyme doctors, because I don’t think they have a gastro issue, I think they have Lyme.” He said he had been seeing this in the past five years. Over Thanksgiving break, I heard that podcast in the car with my boyfriend, Andre. And every five minutes, I was grabbing his leg, going, “That’s me! Oh my God, that’s me!” I mean, it was crazy! So anyway, Lyme looks like a ton of different things.
The classic Bartonella Lyme is, like I said, insomnia, anxiety, OCD, joint pain, muscular pain, feelings of light sensitivity and overwhelm, thinking hurts. That’s all Bartonella stuff. And then there’s this other co-infection stuff that I had with Babesia — which is like, hot flashes, air hunger, drenching sweats, fatigue …
Lauren: And seemingly connected to nothing.
Sascha: And seemingly connected to nothing. Exactly. So, do you want to talk about ozone?
Lauren: Yes. I would love you to tell us how ozone works. Because from what I understand, it’s oxygenating your blood, right?
Sascha: That’s right.
They have to take some blood out, fill it with oxygen, and then put it back in. So that’s what you do when you go get ozone. It’s like one of the lowest-risk treatments you can do. And as long as a pinprick isn’t the biggest deal to you, it’s actually pretty painless.
I think, psychologically, it’s scary. I remember the first time I went to the IV room at Holtorf, which is where I get treated. And I saw these people sitting around with bags of their own blood above their heads. I was, like, this makes me want to die. I’m gonna throw up; this is terrifying. But when I actually was getting it done, it’s just getting an IV put in, and then they draw a certain amount of blood — which you don’t see happening … they put a bag on the ground in a little basket. And you don’t feel anything happening. I am alarmed at how I do not feel that much blood leaving my body. It’s because you’re reclined in a chair for it. Although, my only funny ozone story is that I did get up too quickly after I had been “drained”, before enough of the blood had gotten back into my body. I had to run to the bathroom, because I have interstitial cystitis. So I was waiting for my blood bag to fill … then they put the oxygen in the bag and hang it back up, and then you start getting the blood back. And as soon as you get the blood back, you can get up and walk around. So I got up with my IV, went to the bathroom, sitting on the toilet, and I was, like, I’m gonna pass out right now. Literally, one of the saddest moments of my life was lying on the bathroom floor, hooked up to a bloodbag, lying on my back. (laughs) I kind of peed on myself to get onto the ground so quickly, and I was like, this is hysterical … and I was looking up at this bag, feeling like I was gonna throw up, and I just had to wait until enough blood came back in, until I could stand up and walk!
Lauren: Did you tell Dr. Hunt about that? She would have found that funny. She would have been like, “Oh, you’ve got to take care of yourself!” She’s so sweet. She’s the sweetest, most caring woman. Even when I’ve emailed her late, she will say, “Oh, you were up late. Is everything okay?” She’s such a mom!
Sascha: That’s so nice! But I don’t want to scare people. Ozone is so chill. It was fully my fault for getting up so fast. So basically, they take your blood, and then they get out what looks like a helium tank … if you’ve ever seen a balloon get filled up, those big gas tanks. They have this O3 molecule which is called ozone … so it’s not the O2 that we breathe, it’s O3. Can’t tell you why.
Lauren: Maybe it’s more bioavailable? And maybe purer?
Sascha: I have no idea, but I love what you’re saying!
What I do know is there’s the smell after a fresh rain. There’s that incredible freshness that feels so incredible to breathe. That’s ozone; that’s O3.
Lauren: Oh, wow. Does it smell like a fresh rain when you’re getting it?
Sascha: No, and this is very esoteric, but … it might make sense to you …
… it literally feels like a fresh rain is in your body.
Lauren: How lovely! It sounds like a fun recreational thing!
Sascha: Truly! Athletes call. It’s technically not allowed … somebody called Holtorf when I was there and tried to illegally get some ozone before a big wrestling fight or something. They were, like, no!
Lauren: Is it the new steroids?
Sascha: It is a performance enhancer. It’s so funny because everybody comes in with Lyme feeling like trash, and they get their ozone … I remember after the second time I got it, I was, like, “I feel amazing! I’ve got to go on a run!” (laughs) And the doctors were, like, “Don’t do that!” You feel like you could rip somebody in half; you feel so strong!
Imagine the deepest breath you’ve ever taken … imagine getting 20 of those directly into your bloodstream. It feels incredible.
But anyway, what it does is, it kills pathogens on contact; they can’t survive in oxygen. You get your oxygenated blood back, and as your heart pumps it through your body, if it comes into contact with Lyme, the Lyme like explodes on contact. And then for the next four or five days, your body just kind of mops up the mess. So you have what’s called a Herx.
Lauren: What is a Herx?
Sascha: Good that we got into this.
So, Lyme is very specific in that when you’re healing from it, you’re actually going to start feeling worse — which definitely happened to me.
Lauren: That did happen to you, yeah.
Sascha: Because you’re going to go through something called a Herx, or a Herxheimer reaction — which is called die-off, which you probably have heard about. You get die-off with candida, too.
So die-off is, if you kill a bunch of pathogens at once, they release toxins into your body that your body then has to clean up and get out through your kidneys and your liver. And during that process, you feel like you have a flu.
So this cold that I got this week, I actually thought was a Herx for, like, a week. I had done a big ozone treatment and I usually get flu symptoms and I thought, ‘Oh, we just killed a lot of Lyme.’ And now I’m, like, ‘No, I have a cold!’
Lauren: What’s quite funny is that Herx sounds like ‘hex’ to me, too. It’s like a witch has put a curse on you! (laughs)
Sascha: (laughs) Don’t worry, that’s what Lyme feels like! Pretty much that’s already happened!
Lauren: Now, interestingly, we’ve had to relocate rooms in Sascha’s house because of some ambient noise. And where we’re sitting right now is right in front of her home sauna. I remember when we did our first interview series, you hadn’t gotten the sauna, and you were thinking about getting it. And, you guys, I’ll put pictures up with the episode. It’s gorgeous. It’s like a little wooden sauna with a glass front. It’s just sitting in her bedroom … she’s just opening the door and it’s just lovely and all woody inside.
Sascha: It’s made of Canadian hemlock; it smells like the forest! Yeah, it’s really, really nice. And it can help with Herx, too, so if you want to detox, you can get in the sauna.
Lauren: So you’re continuing to do the saunas. And do you also continue to do the enemas?
Sascha: Not right now, since my fecal transplant. I need to leave my bacteria alone for a while.
Lauren: Okay, but those are things that you can always return to, and if you’re feeling a little run down, you can do the sauna?
Sascha: Totally. If I have a really bad Herx, I’ll get in the sauna; it will help. I’ll sweat the stuff out.
Lauren: That’s amazing. I’m so happy for you.
Sascha: Oh, thank you.
Lauren: So is there anything else you want to share with us about what this journey has been? We’ve talked about the relief of getting the final diagnosis, and all the different treatments that you’re doing, and the fact that you don’t have syphilis. Good for you! (laughs). Is there anything else that you want to share with us?
Sascha: Just that it’s been such an interesting final page, and …
… there’s so much about it that feels like the end of something — even just socially, it’s been such a different experience having Lyme disease than having multiple autoimmune diseases nobody understands. I actually feel like I no longer have an invisible illness in a way, because Lyme is so known.
Lauren: It’s like people suddenly see you.
Sascha: It’s like people suddenly got it.
It was such a bizarre experience to go from feeling like the burden … and this happens to every minority … feeling like the burden was on me to not only be the sick person but also get your empathy by explaining my life to you.
I went from that, to people … like, I got a text this morning: “I’m concerned about you. How’s your health, how are your treatments?” My own family’s … such a shift in their understanding of how severe … like we were talking about, right?
Everybody’s understanding of the severity of what I’m going through has, like, skyrocketed. I’ve met with so much more compassion. And understanding.
Lauren: You’ve also stepped that up your yourself, though, haven’t you? It’s not just the people around you. We did a thing recently because Sascha’s boyfriend was out of town, and he’s helping her get to appointments and making sure she has food and sustenance. And he was out of town. And she and I were talking. And what you did was, you set up a meal train and you set up a Google Doc, where you said: “People, sign up.” And you reached out to your closest friends, who you knew would understand …
Sascha: Which I never would have done had I not had a Lyme diagnosis.
It’s so interesting how my own able-ism came into play around not taking myself seriously until I had a big capital ‘L’ name for what this is.
But you’re so right. Lauren offered to bring me food, which was so kind of her.
Lauren: I feel like that’s what I always do now! (laughs)
Sascha: But you were so generous. You were here, and you offered that. And then she went away, and I was thinking, actually, if I could spread this labor out, what if other people would be willing to help me? And what I actually found is once I said, “Hey, I have Lyme disease; we need 12 nights of meals covered. Are you willing to help?”, I had this overwhelming wave of support. So there’s been such a completion inside myself into feeling so fully seen.
Lauren: But is that not also frustrating – that they didn’t get it before, and they get it now?
Sascha: It’s really interesting. I actually didn’t feel that way. But I can see how. Because I would feel that way.
Lauren: If it were me, I’d be a little resentful. I’d be, like, ‘Oh, well, now you get it.’ Of course, you want people’s help. But by the same token, it’s like, ‘Why couldn’t you get it before? And you can get it now?’
Sascha: Well, I think I changed, Lauren. You know what I mean? I hear you … it’s a really interesting question. I didn’t feel that at all. I felt so touched by how much support was available to me all along, that I wasn’t aware of. But I think it was my own willingness to say, something really serious is happening. I think that grew when I had a label. But also, I think you’re right. It’s possible if I had asked for help earlier when nobody knew what was going on, maybe I wouldn’t have been greeted with so much warmth. I don’t know.
Lauren: Yeah. You changed at the same time as everyone else was listening.
Sascha: Yeah, and I think Angie Alt, who we’ve talked about before … she’s an autoimmune coach … she has such a great, I guess, catch phrase about this, which is: Don’t be weird. She basically is saying, people take a cue off of you for how to treat what you’re going through. She’s saying, don’t be weird … she means about, like, food-related things. Like, “I’m going to bring my own dish to your dinner party. Really, it’s easier that way. I’m so happy to be invited. Don’t worry about me.” They will be, like, “Fine.” But if you’re, like, “This is super weird, but could you make these gluten-free?? I know, this is so weird!!” And that becomes such a big deal.
Lauren: And then you get into that apology thing, which I think women are also more prone to.
Sascha: I couldn’t agree more. And so I think, in the same way when I started taking my disease seriously and admitting that I was debilitated in X, Y & Z way …and also, I was. Once I started doing ozone, I was shocked at how much worse I got. I think you’re basically met with what you put out there for the most part, you know.
Lauren: Which is a great lesson, and it doesn’t just apply to invisible illness. That’s very universal.
Sascha: Yeah, absolutely.
So it’s been a really beautiful completion. I feel so grateful. I feel so much more seen and known and supported than I did before.
Lauren: And you’re a different person. Your energy is clearer.
Sascha: That’s so interesting!
Lauren: I mean, just to walk in and be greeted with your arms outstretched. You’re always so warm and welcoming, but this was like an energetic welcome.
Sascha: Oh, wow. That’s so interesting.
Lauren: But you are more well. You’re a different person than you were three, six months ago.
Sascha: That’s so crazy. And I’ve only been in treatment for three months.
Lauren: And I will say also, when you and I were corresponding in between, I would text you … and I remember texting with our mutual friend Dayna Schaaf, who’s also been on the show, and saying, “I think Sascha’s worse. I know she’s treating stuff. But I think she’s getting worse before she gets better.” Because just the tone of your text messages … even though you didn’t directly say, “I’m getting worse,” I was, like, “Dayna, she’s not okay.”
Lauren: And there was a day that I reached out to you and asked, “Are you okay?” And you were, like, “To be honest, no.” And it was part of the shift where it’s, “Okay, so you’re not okay, cool.” But sometimes it takes us reaching out to each other to check on each other, to make sure that people are okay. Because not everyone’s okay all the time.
Sascha: Well, you’re such a beautiful emissary of that.
Lauren: I hope I’m providing a platform for people to be who they are in the moment that they need to be in.
Sascha: Yes, but truly, for somebody who wasn’t even that close to me until recently, to be as generous as you were.
Lauren: Yeah, FYI, guys, I become besties with all of the people who’ve been on my show! You have no choice. You’re my best friend now!
Sascha: Yeah, Lauren brings me soup and tea. And is okay with the fact that I get worse, and then better.
Lauren: Because that’s part of the process, you know? And I also think it doesn’t necessarily just have to do with invisible illness. It has to do with working through our sh*t. A lot of the time, it gets worse before it gets better. That’s just the cycle of things, and the fact that you then embraced it and said, “I can’t cook, I need help.” And that you so disarmingly asked for the help. Sascha sent this email out to people: “I’m going to do a Google Doc with 12 nights, and if you put your name in, then I’ll see you on the day, whatever.” Perfect. I got the email not long after you sent it, and I got the last spot available. So there were 12 people, or 11 people before me, who stood up and took those places rapid-fire; they were so thrilled to help.
Sascha: I was literally overwhelmed with support.
Lauren: And that’s a lesson, too, that sometimes unless we reach out and say, “I need this help” …
Sascha: 100%, Lauren.
Lauren: … we may not know how much our friends and family are willing to support us.
Sascha: And I’m going to go out on a limb here and talk about something that is potentially going to be triggering for some of your listeners, which is that …
I think we have to be really careful to not buy into our own victimization when we’re sick.
I talk to a lot of people as a coach who say, “Well, everybody’s disappeared!” And I’m, like, “Have they? Have you asked?” I know I didn’t.
Lauren: Because it’s a two-way street.
Sascha: Oh, my God! And most people won’t think, ‘I want to make sure Sascha is not experiencing a tragedy right now. Let me just make sure.’ I had to really be willing to express the severity of how debilitated I was. And what I found was an overwhelming desire to support me. I have a friend coming this Sunday, just to put skincare on my face and help me clean the house.
Lauren: So nice. And why don’t we do these things for each other regardless of invisible illness?
Sascha: That’s such a good question!
Lauren: It’s a really nice thing to just be able to be there for our friends. And it really, I think, reinforces the sense of community that we create around ourselves in our lives. When you’re really close with someone, why not take a little time and cook a meal together? If you do that with your boyfriend or your partner, why wouldn’t you do it with your friends, too?
Sascha: Beautiful point.
Lauren: And for me, that was something that helped when I was transitioning onto AIP. I had friends come over and cook with me. It made it social, and they were excited to help. I think there are so many opportunities … what you’re saying about buying into the victimization of it. There are a lot of opportunities to fall into the hole and throw a pity party, and pity parties aren’t fun for anyone.
Sascha: It’s also hard to get help when you’re self-pitying.
It is tough to help somebody who’s in a lot of self-pity and victimization.
I think one of the reasons my email was so effective is because I was very clear … this is occurring, I’m getting better, I need some help. And if you can’t, that’s okay. As opposed to … sometimes illness can throw people into a place of, ‘Poor me. I want to use this to get all of the care I feel like I never got from my parents.’ It can be this huge thing. I have a lot of compassion for that; I really have walked that path. But having lived both sides of it, I’m so amazed at how much love is available for me. I try to share that story with my clients as often as possible.
Because you have to have help to get through this. And often, we are the things standing in our way. Especially people with autoimmune disease. There’s a huge connection between autoimmune disease and people who don’t ask for help. It’s almost every single one of us.
Lauren: Yeah, and then we all have depression because of it. And then you get anxiety.
Sascha: And then you tell a story that you’re all alone, which is not accurate.
Lauren: Which again … regardless of physical illness, it’s a story that a lot of people tell themselves and they try to fill the void in various ways that are not healthy. Addictions. So to be able to take a healthy approach psychologically to the whole situation is where I say: Everyone needs to go to therapy because it’s so good for you. But also, you and I have done that and we’re able to go, ‘Okay, let me look outside myself. Let me also commune with the people who are in front of me, and ask for the help I need to ask for.’ And it’s made a world of difference for both of us doing that. But that’s a huge realization. For me, it only took four months to figure that out. For some people, it takes years. And it is huge. So, I think we’ve covered so much. You know I like to do Top Three Lists. I know we’ve already done those for your general tips. But I’d love to know if you have any specific tips with regard to Lyme. In particular, the way that your diagnosis has shifted, and whether you could offer any advice to anyone who might be in the same boat.
Sascha: Okay, well, here’s what I’ll say … if you have an autoimmune disease and it’s rampantly untreatable …
There are people that have autoimmunity that are stable; and then there are people that have autoimmunity that are extremely not stable. I was one of those, and I know people who are like this, too. If you’re in that camp, test for infections.
An autoimmune disease, generally, once you get on top of it, tends to get better. If yours is not doing that, and it usually does get very manageable … if yours is not very manageable, consider testing for Lyme, tick-borne illness, Epstein-Barr. There are a lot of infections that can keep people much sicker than they need to be. I would also say the same, too, if you have MS, lupus, rheumatoid arthritis, chronic fatigue, fibromyalgia, Parkinson’s, ALS diagnoses … get tested for Lyme.
Lyme people in general, know that you have to rehab your immune system. When people relapse from Lyme, it’s because they didn’t fix the damage the Lyme made. So if you have Lyme, I would really recommend not just killing the Lyme and thinking that you don’t have Lyme anymore … you have to do what you can to rehab your immune system.
Lauren: You’ve got to break it down, and then rebuild it.
Sascha: Exactly. Or else you’ll relapse, and then it becomes chronic — when Lyme doesn’t have to be chronic.
Lauren: You could think of it in metaphor terms of a building site. If you’re going to knock something down, you’re going to have a hole in the ground and you need to fill it with something.
Sascha: I love that!
Lauren: And you need to fill it with something that’s going to make you better, in terms of literally rebuilding.
Sascha: So my friend, Sue, who’s also going through Lyme disease, she heard something that I thought was really helpful, which is that sometimes when you have Lyme, it’s hard to tell if you’re getting better or worse — because you can have a flare when you are healing, which is called a Herx. What I heard that was really helpful from Sue, and I think she got this from Dr. Hunt because she also sees her, is …
… if you have increased or changed your treatments and you’re feeling worse, it’s probably a Herx. If you haven’t changed your treatments, you’re probably having a flare.
And I think that’s helpful, because if you feel bad with Lyme, you want to be able to ask, do I need to change my treatments? Or is this a healing crisis? There are so many other tips for Lyme. I guess … the Lyme community is so smart. People with Lyme become like little doctors.
So if you have Lyme, and you’re not getting better, you can. It’s a myth that Lyme is this thing that is impossible to heal from.
So, I would get online to patient forums and see what you can do.
Lauren: Or contact you!
Sascha: Or contact me!
Lauren: Well, Sascha, thank you, as always, for a beautiful chat. And I’m really just so thrilled that you’re on this path to total wellness. Because it can happen! You can get well! With a lot of this stuff, we think things are incurable — and some things are, and you manage them your whole life. But something like this, with what you’ve been through, and the fact that you have for years been practicing detox, I think has given you a leg up and I’m just so happy to see you coming out on the other side of it.
Sascha: Oh, thank you. And I think it’s worth saying that I was really the person that nothing worked for. And I was really the person that was never going to get better.
Sascha: Surprise! And if that’s you, you can!
Lauren: And it gets better.
Sascha: You have to be willing to keep digging. And then it can go away. So, it’s amazing. It’s overwhelming. It’s hard to talk about; I feel like I should write a poem or something! Because …
… there’s not enough language to explain that I didn’t have a life, and I’ve been given a life back.
It’s unbelievable. Although, I don’t want to judge people that are really sick, of not having a life. But I think when you’re in the depths, there’s so little that’s available to you. And I literally feel like I’m being released from prison. There’s no way to even talk about this that really captures what a big deal it is. So I’ll just say, I’m so grateful. And also, I worked my ass off, and I put it number one; it was my number one priority for five years. So I want to say that, you know?
Lauren: Make your health your priority.
Sascha: I put every dollar that I had, credit card dollar …
Lauren: And it was worth it. This is the other thing … it’s not like you’re looking back and saying, I regret that investment.
Sascha: No! I have a big-ass savings account right now.
Lyme didn’t ruin me. I’m just saying, I fought for it for five years. So if somebody is listening and thinking, ‘I’m never going to get there. It’s been too many years. I’ve suffered too much’, you’re wrong. That was me.
Lauren: And reach out to people.
Sascha: Yeah. Thank you, Lauren.
Lauren: Thank you! And if you need to find Sascha: SaschaAlexander.com …it’s S-A-S-C-H-A , and we’ll link to it on the website.