LGB: We first met back in 2014 when you came over to my house for a Lyme support group I’d organized from a Facebook post. You thought you might be in remission at that point. How long had you been dealing with Lyme up until then?
Nora: For a little over two years at that point.
LGB: What were your first symptoms and how bad were they?
Nora: Well, it’s funny, I was just talking about this to somebody today—probably other people with Lyme have had this experience—I realized after the fact that I had earlier symptoms that I had chalked up to other things. My acute symptoms felt like they really happened overnight. I woke up in the middle of the night with shooting pain in my wrist, and that was really odd. I decided to get up and get aspirin. When I stepped down off my bed, I had shooting pains in my ankle. The next morning, I slept through my alarm and was late for work because I was exhausted, which was also very weird.
The arthritis was very acute and in the space of a couple weeks had moved to a lot of major joints, and I also had fatigue. But looking back, I had also been kind of run down for a few months before that. I just chalked that up to my lifestyle: I was running a business and doing a lot of traveling. But I realize it was probably earlier symptoms.
LGB: Do you remember getting a tick bite?
Nora: No. That’s one of the things that’s so frustrating when people ask me; I don’t know when I contracted it. I have different theories about when and where I got it but I don’t know for sure.
LGB: So who was the first doctor you went to?
Nora: The first doctors I went to were at this medical center in Brooklyn by where I live, which I think honestly wasn’t used to seeing—I think they just looked at me and thought, this is a white woman who is very healthy. They had a lot of people in there with obesity and diabetes. I felt they didn’t take me seriously. They were like, “Oh, you sprained your ankle.” And immediately I’m like, “Both my ankles?!”
I found out later that they did give me a Lyme test, which came back positive but they didn’t call me. When I confronted them later, they said, “Well, it was non-clinical and it’s your responsibility to call about your lab results.” I didn’t get anywhere with them.
I went to my family doctor a few weeks later. At that point, I couldn’t move my arms any longer. The arthritis was so bad that I had paralysis in them. I had trouble sitting and standing too because of my knees. That doctor diagnosed me with a positive [Lyme] result. Then I was sent to a rheumatoid arthritis specialist because my general practitioner admitted that he didn’t know much about it.
But I also was so uninformed that I was relieved when I was told I had Lyme disease! I thought, Okay, it’s not Lupus. It’s not MS. I had done some research online about what else I might have. And I thought, Oh, this’ll just be some antibiotics and I’ll be done. I had no idea what was in store for me.
LGB: So who gave you your first antibiotics?
Nora: The general practitioner did. I think. Either that or he sent me to the arthritis doctor right away, and that guy said he would give me no more than two months of antibiotics. This is an important part of the story. They didn’t tell me anything. I knew nothing about herxing. Once I started taking the antibiotics of course everything got worse. And it was really scary. I was really cognitively impaired at that point. I remember talking to my business partner and saying to her, “I’m sorry by the time you get to the end of your sentence, I can’t remember the beginning of it.”
It was terrifying. I had no idea what was happening. However at the end of the two months, I would say I was almost entirely better. But I had done enough reading on the Internet that I felt very strongly that I had a late-stage Lyme case based on the severity of the symptoms I had had. I really wanted to stay on the antibiotics. I was on Doxy[cycline]. That was it. Nothing fancy. The rheumatoid arthritis doctor wouldn’t give me any more.
So I found an infectious disease specialist who was supposed to be very, very good. He was outside of New York City, so you would think kind of Lyme central and that he would have been the guy. But I was shocked that when I went to see him with my test results, he told me I had never had Lyme disease. And that I should get an HIV test.
That was really confusing and kind of terrifying. At that point I was out of options. No one would give me any more antibiotics. Somehow I just had this strong feeling that I needed to stay on them.
For about two weeks, I remember I was almost perfectly fine. I visited my sister in Los Angeles and went out with her. We were celebrating and I had a few drinks. I woke up the next morning and all my symptoms were back but much, much worse. I spent the next six years battling this disease.
I feel like if I had just been given a longer course of oral antibiotics from the get-go, I might have been interviewing with you years ago about being in remission instead of now in 2018.
LGB: How did you find someone who gave you long-term antibiotics?
Nora: This is important. I basically found someone to re-diagnose me with Lyme disease. Since I was told I didn’t have it, and Lyme had been ruled out, I was having all these neurological tests for MS and Lou Gehrig’s disease. Nothing came back. I had done research and I really believed that Lyme’s what I really had. So I found a Lyme-literate doctor in Middletown, New Jersey, which is quite far from New York City—it’s a two-hour drive—but they took my insurance and they would take patients.
I drew this graph that had color coded all the different symptoms I had had—they seemed at the time like such a crazy list of disparate symptoms: crippling arthritis that would move around from joint to joint, massive headaches, facial ticks, muscle spasms, exhaustion, brain fog, sensitivity to light and noise. I graphed this out over time and also the drugs I had taken. I gave it to the doctor and she immediately said, “This is amazing because I know from this exactly what happened. You have Lyme disease.”
I also advocated for the IV at a certain point, and she was only going to give it to me for a month because that was in her experience the longest people’s insurance would cover it. I was shocked that she wasn’t giving me an option for longer. She said, “Well, you don’t have to drain your savings.” And I said, “Well, I don’t see why I would ever need money if I’m too ill to ever be able to spend it.” I was willing to take the chance that insurance wasn’t willing to cover it and cover it myself.
LGB: When I met you in 2014, you felt you were possibly in remission. What treatments had you done at that point?
Nora: I kind of did have a remission and then fell out of it—or had a false remission. I had done IV at that point for 9 months. First I did Azithromycin, and then probably the last four of five months of that Rocephin, which I had a much better reaction to. I also had aspheresis done at this clinic in Cham, Germany, and I saw a real improvement from that. When I met you, I think I was just on supplements.
LGB: What changed?
Nora: I hate to say this but I had been in a relationship that had become really unhealthy and had a lot of stress in it. One day I woke up and my Lyme symptoms were back, kind of at the end of that relationship.
I started seeing Dr. Bernard Raxlen. He put me back on oral antibiotics probably for four months but my fatigue and brain fog didn’t move. So we decided to go back on IV. He hit it much harder than the other doctor. I was on 500 mg of Rocephin twice a day for about another six months. And I was also treated, like you were, with Mepron. I was on Mepron for nine months as well as some orals because Raxlen believed I had never been treated for Babesia or Bartonella properly. That’s why I had that relapse because the Lyme was sort of put in check but the co-infections weren’t. I guess there was something to that.
LGB: We’re friends so I know that you worked throughout this whole Lyme ordeal. How were you able to do that with such massive brain fog and fatigue? Also, tell us what you do!
Nora: I don’t know. I honestly don’t know. My job requires me to be very present and it takes a lot of cognitive ability. My company ImageThink creates live visual storyboards at corporate meetings. That means that you have to be listening to what people are saying, synthesizing what they’re saying, deciding the important parts, and really quickly drawing the pictures of it out on massive, mural-sized boards while they watch you. It takes a lot of physical stamina because you’re standing up and drawing for hours at a time. It also takes a lot of mental ability. When the brain fog was really bad, I stayed in the office. My business partner at the time was very understanding and covered it. But honestly I felt like I probably accomplished in a day what would take someone two to three hours to do.
I was lucky because I worked for myself because I don’t think in other circumstances I would have been able to hold down a job for part of that time. I fortunately had other people help me.
LGB: It sounds like there were some things your insurance covered. I imagine going to Germany was something they didn’t cover.
Nora: No, they didn’t. You have a specialty pharmacy when you have IV. The pharmacy I was using Infuserve was very, very good because they would submit all the bills to insurance. But it was really freaky because I wasn’t getting any bills for a long time, so I wasn’t sure how much I owed. In the end, Aetna ended up paying like 80% of it for the entire nine months.
When I did IV again, I didn’t go through that specialty pharmacy so I didn’t have nearly as good of results with the insurance, even though that pharmacy was cheaper. In the end, I think Infuserve was a better value because they were big advocates and really helped out on the insurance end. At that point I was probably not well enough or on top of it enough to manage. So the second time around I paid a lot of money: like a couple hundred dollars a treatment a day.
LGB: Wow. So that was when you were on it with Raxlen. How long were you on it with him and why did you go off?
Nora: About five months. I had a Hickman port in my chest, and I was lifting weights, which apparently you would think you shouldn’t do [laughs]. I tore a stitch and it started to come out. So we had to pull it out anyway.
LGB: That’s when you went off for good?
Nora: I went off it for good.
LGB: After you went off IV, Raxlen treated you for co-infections for a while.
Nora: Yeah, I believe he treated me for the co-infections both before the IV and after. He treated me for Bartonella. The Babesia treatment took the longest, as you know. Right?
LBG: [laughs, says an expletive] Forever.
Nora: Forever! It’s so frustrating. And that’s also a very expensive medication.
LGB: Aetna didn’t cover that?
Nora: It did but I had a deductible so the first bottle cost $1000.
LGB: When did you stop seeing Raxlen?
Nora: I don’t know if I ever officially made the decision to stop seeing him. Oh, I should also mention, so people don’t think I just did antibiotics, that I also saw an acupuncturist weekly for years and also tried Dr. Zhang’s herbs.
LGB: But you don’t go to Raxlen any more.
Nora: No, I don’t. It’s really hazy to remember. One day I just stopped taking the Mepron because I was tired of it and I seemed to be doing all right. And then it was like, Let’s wait and let’s see. What I really wanted that I didn’t get from Raxlen was quantitative data. I wanted there to be numbers. I kept wanting him to do my CD57 test. And he kept saying, “That’s not a very good measure.” But I wanted a result, I wanted a number where we would make a decision: this is a marker and you’re in the well zone. I never had a doctor who had that.
For me the biggest thing wasn’t getting from the worst I ever was—let’s say about 10%—to 70%. When I was at that 10%, I had no energy, no vitality, and felt like I was often on a planet that had a completely different sense of gravity, like Mars or Venus. It was so hard to move my body. Even my thoughts were heavy. It was so hard to think. One of the hardest things was I stopped being able to read, and I used to be a big reader, and laying in bed and not being able to read was pretty miserable.
If that was my lowest point, it wasn’t hard to get to 70% or 80%. That last part, that last 20%, to get back to who I remember being took me years. I could function but all I could do was basically go to work, work on my business, come home and just collapse. Or I would feel like I was not entirely enjoying myself because I would just be pushing through so much exhaustion. My thoughts were cloudy. I mean, I had brain fog for years and I hated it.
It was really, really hard. I did a lot of things to try to fight for that last 15%, 10% of what I thought was restoring my health. When I finished with Raxlen, I wasn’t there. I had a friend who had a thyroid issue—she had Hashimoto’s—and the symptoms were sort of similar and she was seeing this naturopath. So I went to see her. She did muscle testing and put me on a really restrictive diet and supplements. But I had been already taking supplements! There was a point in time I took 84 pills a day. Anyway, I stuck with the supplements and with this really restrictive elimination diet. After six or seven months, it made a really big difference.
But every once in a while I would have these relapses where I’d get tired again or foggy again. It would seem to come out of nowhere and last for a few weeks. It was so disheartening. Raxlen and my theory was those mini-relapses were from candida. Those were hard to weather because I would feel good and think I was out in the clear, and then I would have a setback.
I was having a period like this and met an energy healer who told me about a woman who had Lyme and was using this frequency machine [FSM]. I interviewed with the woman but wasn’t really sold on it. The machine cost $3,000. A week later I got a check from the IRS saying they made a mistake on my taxes from the year before, and the check was for $3,000. At that point, I felt so frustrated. I didn’t know what else to do and felt like I was running out of options. So I got this machine, and I have to say that this machine has really helped me. Mostly I do it for maintenance like for liver function, thyroid, endocrine. I’m not even running the Lyme protocols. It’s mostly, I think, refortifying my system.
LGB: Do you have any lingering symptoms?
Nora: If I cheat on my diet. I definitely can’t tolerate alcohol very well or sugar. And sometimes I push that a little too far. Now my diet is gluten free, sugar free, low dairy. So it’s not that extreme any more. I still take a lot of supplements every day, but definitely not 84 of them. A number of them are supplements that I think everyday people would take, like a lot of omega-3, turmeric, vitamin D.
LGB: Thanks for taking us through all that. You’ve been through a lot. And I’m sure a lot of readers can relate. How did you personally keep going through all that?
Nora: It’s been six years, so there were different periods where it was much more extreme and I used different tactics…
LGB: How about for the most extreme period?
Nora: The most extreme was when I had paralysis. I thought maybe I had MS, and they didn’t really know. No one still had explained herxing to me. Of course I got really sick after I started the IV. At that point I was 32 and I was more concerned that if this is the shape I’m in when I’m 32, what is it going to be like when I’m 42 or I’m 52? I was really more worried about my future. And I thought, okay, at any point I can decide I can’t take this, and I’ll just check out and take my own life.
And I know that probably sounds really dire but I was in such a bad state that that was a comfort to me. I don’t have to suffer with something if I don’t want to.
And at another point in time I thought, okay, if that’s the case and I’m really going to be even more disabled in a decade, I’ll have time to feel bad about it then, so I’m not going to think about it now. At a certain point I realized that my mental attitude was going to be critical to helping me through it and I just wanted to survive. So I would force myself to have more positive thinking as almost like a drug. I mean, I just threw so much spaghetti at the wall trying to get well, and that was just another thing I did. I really tried to just treat it like a tool and think about: How could I possibly get better if I was feeling sorry for myself or if I was feeling bad?
Another thing is I think the stage people go through in grief where you want to be angry and feel like “this is so unfair!” and “why is this happening to me?” I almost felt like I skipped that phase because I was so sick and my brain fog was so bad at that point. I just was really, really focused on solving the problem and making myself well. That took all the mental energy I had. I didn’t have the rest of the time to feel angry about it in a way.
LGB: I think what impressed me most in knowing you is that even though you were really, really sick and had every excuse to drop out of life, you didn’t. You and I have talked about this. How do you feel keeping your business, working, and traveling a lot helped or hurt your recovery?
Nora: I don’t know; it’s so hard to say. I’m an artist but I also have this really analytical mind and I realize this story’s not very scientific. If this were an experiment, I’d have way too many variables. But I was also impatient and I wanted to get better, so I wasn’t going to do one thing at a time. If any of it works, that’s all I care about. So it’s a little hard to say what worked and what really didn’t.
I’ve heard people say—I think this was a man you interviewed—who said, “People who stay sick with Lyme are type A.”
LGB: Yeah, Scott [Forsgren] said something along those lines.
Nora: But then I also read this book where they interview different doctors about how to get better with Lyme and some doctors said, “The people who get better are the ones who keep pushing and pushing through it.” So I don’t know! Maybe that’s what helped get me through it or maybe that’s why it took me six years to get through it. I don't know.
I just know that it was a really big challenge because I’m not someone to ever sit and take it easy and be sick. There were certainly times where I had no choice. Perhaps I didn’t give myself enough rest. On the other hand, it gave me something to want to get better for and it gave me something else to do. Once I was at a more functional state, it helped me reframe my attention from being a person who was sick from Lyme to a business owner or a person who was traveling—so I did! I packed all my IVs in cooler bags and took them to Mexico when I had a wedding to go to. I traveled with all the syringes. I did that. That’s just kind of who I am.
I will say, when I got sick it was one of the happiest times in my life.
LGB: Same here! I had a doctor tell me that happiness can be a source of stress and that’s what triggered something in my body…
Nora: Crazy! Anyhow, I’m not dismissing some of these other thoughts. My naturopath told me, “People who have bacteria like Lyme have repressed emotion and repressed anger.” Maybe there’s something to that or maybe there’s something to that guy saying, “Oh, it’s all those people who are really hard on themselves and are really type A.”
At the same time, I would have also have thought that when I got sick, it would have been a time of a lot of bad emotional stress and psychic stress in my life. But I was on top of the world when I got sick. I was training with a trainer three times a week and I was so happy. That’s what was so hard, I think, is that I was just struck down literally out of the blue.
LGB: Do you feel like you made meaning at all about what happened to you?
Nora: I’m so glad you asked that question because I really wanted it to be meaningful. At one point, I remember laying in my bed and thinking, If there’s a lesson out of this, this is so painful, I don’t want it to be wasted. And at the time, I had a really hard time figuring out what the lesson was other than it [expletive] sucks being sick. But it was almost too much to put on yourself at the time. Being that ill—and just trying to survive and trying to get better—and also trying to find the meaning all at the same time I think wasn’t realistic. But I desperately wanted to connect it with something. I think it gets easier to find meaning when you get through it a bit. It’s a big task to put on yourself when you’re in the thick of it.
I feel like I’m still sort of searching for that. I had a professor I visited who had been battling cancer and he had “chemo brain” which I think is very similar to Lyme brain. He said this beautiful thing to me. His comparison was that when blind people lose their sight, their hearing improves. He felt that losing some of his cognitive ability had opened up an emotional intelligence for him that he didn’t have before. I love that because I think that was the same thing that happened to me. Reframing losing some things but regaining other things has been helpful. I think it opened up a whole spiritual journey for me that I would not have been on at all.
Losing the signifiers of your identity so completely, having that stripped down is a pretty profound experience. My whole life I had been recognized for my intelligence. And more than one person had said to me, “You have more energy than anyone I’ve ever met.” And so I was this person who was always on the go. I was this smart person. I was super fast. And I lost all of that. I had to figure out who I still was when I wasn’t that and get in touch with that. If you can get in touch with something that is beyond circumstance, I think it puts you in a much better place in moving through life.
The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority.