BATH
“Lyme disease is a part of my life,” Angèle Rice of Bath said recently as she prepared to take her son, John-John, to chess club. “But I don’t want it to be my whole life.”
The reality, however, is that for many people like Rice, living with Lyme disease and its associated co-infections has consumed a very big part of their lives. And in Rice’s case, it wasn’t until the last few years, that she got some of hers back.
To call it a “difficult journey” would be the epitome of an understatement.
In 2014, Rice and fellow Lyme survivor Paula Jackson Jones co-founded Midcoast Lyme Disease Support and Education, and have been leading monthly support groups in Wiscasset and Rockport.
On May 2, the pair will be instrumental in launching the first Midcoast Maine Lyme Disease Support and Education Conference at the Wiscasset Community Center, from 8 a.m.-5 p.m. Experts in the field from around the country will be on hand to discuss a variety of topics at the free event.
The conference will be followed on May 3 by the fourth annual Jimmy the Greek’s Maine Mall 5K for Lyme Disease Awareness, beginning at 9:30 a.m. The 5K will be hosted by LymeBuddies.
When all is said and done on May 4, Rice and Jackson will have earned a rest — and it is likely to be something Rice will need. 
Recently she explained that living with a tick-borne illness like Lyme, as well as co-infections such as Bartonella and Babesia, may mean that a very active couple of days leading into that weekend could mean that the next few days she will be too tired to do much more than get up off the couch. 
But that is life as Rice has come to know it. 
“Well, I think it’s also realizing that my family, I can rely on them, but they can’t walk this illness for me,” she said. “It’s a road that I have to walk myself. And it’s finding those resources for myself that help me cope, as well.” 

Those resources she has been able to find for herself are some o

f the same ones she hopes to share with other Lyme survivors through the conference. 
For a number of years she has been on that road with her husband, Jonathan Rice, and their 9-year-old son, John-John. But her journey has been a much longer one, dating to a tick bite at age 13 in East Hampton Springs on Long Island, New York.

Growing up

Angèle grew up in New Gloucester in an artistic family. Her dad was a musician and her mother and grandmother were painters. She said she even used to play piano.
“I think because we were in a trailer from the ’70s, it was a really simple life. We had a big garden. Some of our friends and neighbors were farmers. We lived in a trailer park,” she said. “Life has always been extremely just really simple. And the simple joys were going out and playing with your friends. And making mud pies. And collecting rocks.“I played out in the woods forever,” she added. “I was in the woods a lot.”

Her paternal grandparents lived in Bath, and she remembers that she “would visit and they would take me to Popham Beach and Reid State Park. It was just really the simple things, hanging out with friends and family and stuff like that. When I think back to probably 8 years old, that’s when I was out in the sunshine. Running around, riding my bike. You know, just being a kid and having fun.”
She was an active child, recalling her mom once told her that she was a lot like her own son, John-John.
“I was just super, super busy and energetic,” Rice said. “I don’t see myself as that, but it was interesting to me to hear her perspective because I don’t remember that.” 
While there was certainly fun, she did have some bouts early on with illness. Angèle explained that she had some allergies as a child and would get sinus headaches. 

“But my parents didn’t have a ton of money, so it wasn’t like we could run to the doctor whenever,” she said. “So you just coped … take a little rest, and do what you can.
“Medicine back then for kids, too, was different, compared to these days,” she said. “It wasn’t like there was Claritin D for me to take. So you just kinda did what you had to do.”
But when she was 12, she lived nearly a year in New York at her maternal grandfather’s home. It was during that time that “I remember walking, and looking down and seeing a bulls-eye rash on either 

my left leg or arm. I was thinking, ‘Is that a spider’s bite?’” she recalled. “I remember showing my mom, trying to figure it out.”
The property did have a lot of ticks, and is still considered a pretty endemic area for ticks and Lyme disease, “so we’re not surprised.”
That was 24 years ago, at age 13. It would take another 17 years before a doctor would officially diagnose Angèle with Lyme disease. In the meantime, though, the disease started to take it’s toll on her 92-pound body.
“From age 13-19 I had severe asthma and at 13 or 14  ended up in the ER at Maine Medical Center,” she said. “I ended up seeing the head of pediatrics. He diagnosed me with four kinds of asthma that night. My peak flow was a 90, and it should have been 420. So it was pretty bad.”
She said it seemed that she was always the one who would catch strep throat and colds, or develop bronchitis, double ear and sinus infections. She would need allergy shots.
Her parents divorced soon after she returned from New York, and she lived with her mother in the Portland area. 
During her first year at Portland High School, Rice missed 90 days of school. She still managed to finish sixth in a class of 250 kids despite being sick. 
She attributes much of that to her mother being a teacher. 

“OK, I know you’re sick,” she recalled her mother saying, “but you’re still alive and breathing, so we can still work on your school work and stay caught up.
“I think of her approach, ‘Yes, you are sick and I validate that, but we still need to keep going,’” Angèle said. “I’ve looked back and realized that’s kind of how I’ve approached my Lyme disease. ‘OK, yes, you feel horrible, but there is still some life stuff you have to deal with anyway,’ and you kind of find that way to cope.”

As a student, Angèle recalled, there “were a lot of times when I would be in the ER, go into school for half a day and do the tests I needed to for that day, and go back home and rest. So I ended up doing that off and on quite a lot.”
She said she didn’t think she’d undergone any other additional kinds of testing to look at her health until she was 17 or 18. 
Angèle writes in her bio that “from age 13-19, she dealt with constant health problems including asthma, heart problems and blacking out, fog brain, anxiety, depression, paranoia, skin problems, several allergies, fatigue, nerve pain, and was unable to keep a healthy weight.” As she got older, she outgrew her asthma but the rest of the symptoms stayed.

Starting to connect the dots

As she sat at her kitchen table in March and shared her story with The Times Record, her husband, Jonathan, noted that one of the most interesting things from her childhood that “you definitely can’t say is hereditary,” had to be her heart. “That seems like a precursor to something like the autoimmune stuff that came a few years ago.” 
“When I was a teenager I would be sitting and then get up really quick … and I would feel like I was going to drop on the floor and black out,” she said. “Like things literally would go black. (It happened) a couple times in the shower too because that changes your blood pressure.”
Once she hit her head in the shower.
“Those kinds of fainting spells, (others) really didn’t start taking notice of that until I was 18 and I ended up having a heart monitor for a couple weeks,” she said. “When you have it on for a couple weeks they tell you to push it to the limit to see what your heart will do.” 
So, essentially on doctor’s orders, she went to Fun Town with the monitor on. 
The monitor was followed by a couple EKGs and an echocardiogram. Her 

mother and half-sister had heart murmurs, so doctors wanted to see if Angèle possibly had a heart murmur, too.
“They told me I had nothing,” she said.
The heart issues did n

ot go away, though.
When his wife was about 33, Jonathan said, “I noticed that (Angèle’s) pulse was weird. It would speed up and slow down.” 
He didn’t know why it was happening. 
“This is probably the scariest Lyme disease-related, or what we think was Lyme-disease related, situation,” he explained. “Her standing heart rate was 120 or 130. That’s just below what I get when I do cardiovascular exercise.” 
Her doctor sent her to Beth Israel Deaconess Medical Center in Boston for a dysautonomia test. 
Dysautonomia is an umbrella medical term for a group of complex conditions that are caused by a malfunction of the autonomic nervous system, which regulates all of the unconscious functions of the body, such as the cardiovascular, gastrointestinal, metabolic and endocrine systems, according to MedicalNewsToday.com. “A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment.”
Angèle explained that when she would lie down and then get up quickly, her body couldn’t regulate its blood pressure correctly.
“For a long time my blood pressure would be like 90 over 50. Really low,” she said. “And yet I would have this pulse of like 130, kind of all at the same time.”
It turns out that her condition was a result of Bartonella, a co-infection of Lyme disease, that she still has to treat. 
“That was the scariest,” Jonathan said. “I thought, ‘Oh my God, you can’t live with a pulse rate that high for a long period of time,’ or at least I wouldn’t think you could.”
She saw a local cardiologist a few years ago and he did an EKG.
“I was sitting in his office and my pulse was 120 or 130, sitting, doing nothing. And when your pulse is that high it’s like you can almost hear your heart beating in your ears,” she said. “And you’re dizzy and the room just feels like it’s this out-of-body kind of experience. And you’re going, ‘Oh, God, what’s going to happen next?’ You can’t contro

l it. And that’s the other thing with dysautonomia-type issues. Your body is just going to do it. You can’t control it. It’s the automatic parts of your nervous system, like your breathing, your pulse, your sweating. All those things that your body should just regulate on its own naturally, go out of whack.”  
It’s really scary, she said, because “you’re like, how do you even have a life? How do you cope with that? What do you do for it? If it’s a part of your body that should just normally work, automatically, but now its whacked out, what do you do?”
The doctor told her that he didn’t know what to do. He gave her some medicine to slow down the heart rate, “but then it would make me tired and make me feel ultra knocked out,” she explained. “I have a kid at home. My husband works second shift. I don’t have time to feel that way. I can’t be knocked out on the couch. I have to be able to keep up with my child. 
“But then, without any kind of medicine you can’t keep up with your kid because your pulse rate is so high,” she said. “So you’re stuck. You’re on the couch because you can’t get up and clean the house and take care of your kid, but then if you take something, you’re stuck in the same spot.”  

Learning to live with it

Over the years, Angèle had seen several doctors, but it was when she had her son at age 27 that she reached the breaking point. She had several doctors tell her nothing was wrong, it was all in her head, and she was looking for attention. She even saw a nurse writing in her chart that she was a hypochondriac looking for attention.
“When you’re sick a lot you start to go, ‘Well, can people tell? Can people see the dark circles under my eyes? Can they tell that I’m shaky? Can they see I’m holding on to somebody for dear life so I don’t black out on the floor?’,” she said. “You get a lot of an

xiety. Obviously you don’t like your physical body because it’s not your best friend. So I think … you just want to be in your own shell, away from everyone and everything. You start to go into yourself as a way to kind of protect yourself in a very vulnerable state. And it was really frustrating.”
Angèle said she eventually found a local naturopathic doctor who believed her and tested for Lyme disease and co-infections. At age 30, Rice was finally diagnosed — 17 years after the initial tick bite. 
The fog began to lift, but her fight was not over, she states in her online bio. She has been in treatment for the past seven years.
“When we finally got the Lyme disease diagnosis, it was almost like good news,” her husband said. “Finally we know. How many doctors we went to before that where I sat in the room with them and you can tell they just kind of push you out of the office because they don’t know what to do and they don’t want to look any deeper.”
In that time, however, her treatment included some hurdles. Three years into her Lyme treatment, at age 33, she was diagnosed as a genetic celiac with a MTHFR gene mutation, which made treatment complicated, but not impossible.  
“My blood test said I carried the celiac gene. When you weigh 92 pounds and you can’t gain weight and you have weekends of vomiting,” she said, “and you’re ending up in the ER for fluids, it’s pretty much screaming, ‘You’re a celiac.’”

Focusing on John-John

Since she was bitten, Angèle has suffered from anxiety and some paranoia. When she had her son, however, she noticed her anxiety and paranoia, as well as some post-partum depression, were heightened. “I couldn’t put it out of my mind.” 
When her husband “left to go to work, I felt very vulnerable. Here I had this little baby and I was waiting for somebody to break into our apartment and kill me,” she recalled. “So if he left for work and John-John was sleeping — he was safe, he was sleeping 

— I would go take a shower and I was petrified somebody was going to come in a try to kill me in the shower. My anxiety level was just skyrocketed. Even if it was just John-John and I, and I took him for a walk, typical get-the-baby-out-of-the-house stuff, I had such a hard time doing it because I was just so scared that something bad was going to happen.”
“That’s something that will rise and fall with her,” said Jonathan, referring to his wife’s Bartonella. “I can tell she’ll be getting really anxious and worked up about something, beyond what is normal. I’ll be like, ahhh, it’s time to treat that little flare up …”
But in many ways, having her son has been one of the driving forces behind her getting to the bottom of her own health issues. 
Her son, who will turn 10 in August, has sensory processing disorder. As a result of some of his difficulties — “I saw my son was so overwhelmed by the classroom,” she said — the Rices have opted to home school. And part of educating John-John has been a lesson for Angèle, too. 
She has become an advocate for her son as she has worked to learn about physical and occupational therapies to help him cope. His condition wasn’t considered serious enough by the insurance company, so they didn’t cover most things. 
“I had to learn PT and OT stuff for home,” she said. “There are a lot of things, and here I am, in full-out Lyme trying to help my child cope with the world and I’m still trying to help myself cope all at the same time, so it’s like double advocacy.”
That push to research treatments for John-John has been invaluable as she has had to work so hard to find ways to deal with her own health struggles. 
“Life really does not care whether you’re chronically ill or not. It just happens,” she said. “But I think you really realize that when you look back, you’re like, ‘I actually did all that? Went through all that at the same time?’ You definitely see and get stretched and have to mature and adapt.”
Since Angèle has to deal with fatigue issues — a day or two of strenuous activity could mean two or three days of recouping — the family has had to find a schedule that works for them.
“Now, at this stage of the game, it’s like, yep, we got up at 9 or 10 (a.m.), 

we’ll do homeschooling from 2 to 5 (p.m.),” she said. “You just start to accept that you have your own groove and own way of doing stuff.
As John-John was growing up, both he and his mother had some difficulties meeting new people, but that has changed as they developed some relationships through programs at the local library, and as part of the Midcoast Maine Homeschool Center. He has been part of a swimming club in the past, and is currently in Theater Project and chess clubs.
“He really wanted to make friends, he just didn’t know how,” she explained. “Homeschooling allowed us to work on it.”
She noticed that changes to his diet have helped tremendously. Now, he enjoys collecting license plates and cars, and enjoys watching TED talks on Netflix.  
“That was my goal,” she said, “to help him like himself as a person. Not to change him.
“Focusing on my son gave me a reason to help myself,” she said, noting that she discovered she also has some sensory issues. “We both wanted to get into the outside world and know how to adapt.”

Hitting their stride

Jonathan has an outgoing personality, and describes himself as the “social bug” in the family. His wife, not so much. But that’s no longer the stress it once was.
While his wife still gets tired, and deals with her own sensory issues, hanging out with friends happens infrequently. But Jonathan still enjoys getting together with friends to watch a game. 
“Occasionally she will come,” he said. “So she’s not hiding out here all the time, but it’s definitely two different worlds in that sense. In the last 6-8 months we’ve really finally just hit our groove. She knows I’m going down and she knows I’ll be home and it doesn’t really bother her anymore. I’m not worried about what’s going on at home because I know she’s not going to call me unless it’s something that really I need to be home. 
“I guess after 12 years we just finally hit our stride,” he added. “We stopped trying to fit into societal norms. I think eventually you just throw your hands up in the air and you say, ‘You know what, the hell with it.’ Basically, that’s the best way to put it. It is what it is, and that’s what we’re going to do.”

Treatment

“I kind of feel like I had to do it old school style,” she said of her treatment. “I find out I have Lyme disease. OK, I really don’t want this, because as far as I know, there’s no cure. (Jonathan) was happy to hear the answer, I wasn’t.”
Shortly after her own diagnosis, it became very real how little there was out there for Lyme survivors. 
“Two weeks later … I found out my sister had a rare form of cancer, like the rarest cancer you can have,” she said. “But yet, Dana Farber had all this research and all this time and energy put into this kind of rare cancer, and if the one medicine that didn’t work for her, didn’t work, there was at least some options.”
Her sister had surgery and will need to take medicine for the rest of her life. But this very rare form of cancer still seemingly had more options than treating Lyme disease. 
“Is one worse than the other?,” she asks herself rhetorically. “It’s just different. And I think that’s the thing. I’ve just had to learn to adapt and get really creative.” 

Lots of layers

Treatment has been a layered approach for Angèle, explaining that she has worked with her naturopathic doctor to tackle the most troubling symptoms until they are controlled.  
“It’s a journey. It takes time. It takes a lot of adapting,” she said. “And a it takes lot of creativity. It’s going to be layers. Like for me, a lot of my joint pain and nerve pain is mostly gone, especially once I dealt with the Lyme disease and the Bebesia. I was able to get it pretty much out of my system” within the first three or four years of treatment. “But when I figured out I had the celiac disease and got on the correct diet for that, it was like a while other layer was taken out. So there’s a lot of inflammation and joint pain. I still get it but not anywhere near like I used to.”
Though the Lyme and Bebesia layers have been peeled back and symptoms haven’t flared up in a couple of years, nothing has fully suppressed the Bartonella, which contributes to brain fog, garbled words and anxiety.
“There’s a lot of loss with Lyme, and it’s recognizing it, accepting it, and validating it,” she said. “You could be the smartest person on the block. And sometimes you’re going to feel that you know nothing, because you can’t recall the information. It’s there, but you can’t express it or say it. I used to come up with some pretty interesting words and say things backwards, and after a while, you just make jokes about it.”
Her husband sometimes will notice that other people are not understanding what she means to say, so he will “finish her sentences for her, or I’ll help out with the conversation.”
“But even with that … what’s hard … is that I’m a very inward kind of introspective personality so if I feel that I’m being corrected, even if I need some help,” she said. “You kind of go, ‘Great. I’m a loser. You have to fix me. You have to help me.’
“I think emotionally, you kind of feel like ‘I’m an adult, and I should be able to do X, Y and Z, so leave me alone,’” she added. “And you can kind of get defensive in that way. And now I’m kind of at a point where I’ll say something goofy, and I’m going, ‘What on earth am I even talking about!’ And you just have to laugh. Or you put things in weird places. I’ve put cereal in the freezer. … We had movie tickets, $65 worth, I can’t tell you where that went. The sock monster must have it.”

Resources to throw at it

Angèle Rice has done the long-term antibiotics, and now deals with her symptoms with diet, various herbals, vitamins and minerals.
Herbals are prescribed by a naturopathic doctor. 
“We’re lucky in a sense. … We have some bullets to throw at this,” Jonathan said. “I do fairly well income-wise, but I will see these people on the online groups. … They don’t have the money really to do some of these things that we are able to do. Other people have more money than we do and they can really absorb it. But there are people out there that don’t. You’ll see them say, ‘I can’t get this antibiotic. I can’t afford this.’ And they just get sicker, and sicker and sicker, and they’re pleading for help. And there have been a couple instances where they just off themselves. They commit suicide. So I’ve seen that.
“But I think the stress for me is that I’m the sole breadwinner,” he continued. “There’s no other income coming in. So what happens if I lose my job? Or if I get laid off. Or if BIW fails to get the next contract or whatever. It’s not comforting when somebody at Starbucks with a master’s degree is handing you your coffee talking about, ‘Yeah, I can’t find work.’ (Chuckle). What’s going to happen to me, you know?”
Because there are a lot of out-of-pocket expenses with Lyme disease treatment, the Rices have not always been able to afford it either. 
“So for me what was hard is I knew … I had to pay for the appointment out of pocket. I have to get specific herbals that (the doctor) wants me to take for specific symptoms that are really talking at the moment, and supplements,” she recounted. “And then I’m looking at our budget for the month. There were a lot of times that he would get upset with me because I wouldn’t get X, Y and Z herbals and supplements because I knew I couldn’t afford it. And I had to choose between my mortgage, and my health. And I did it quite a lot. And because of my personality and the way I am, I’m going to take care of everything else first. And mom’s going put herself last.”
Eventually, she has been able to figure out a pathway to treatment for herself that seems to be working. Angèle considers herself about 70 percent better, and said that she is more social and more confident as a person. She can “put that advocate hat on for myself, not just for my son.”
If she had it to do over, though, Angèle said she would have gone to counseling sooner and more consistently, because it did help. She also has kept a blog and uses her photography — Angèle’s Wings Photography — in her treatment. 
“You need a team, not just a doctor. You need a counselor, too,” she said. “Or, if you go to church. Use that. Take the help that’s there now. Don’t worry about the stigma.” 

Promoting awareness

Jonathan noted that some of the Lyme disease folks are anti-CDC (Centers for Disease Control and Prevention).
“No, we need to get the CDC on board. We need to get this mainstreamed so that the government, and insurance companies know what to do with it,” he said. “I think it’s like AIDS in the ’80s. It took a while to get this thing mainstreamed. Get it understood, and then people could get treated.”
What I’ve noticed this year, Angèle said, is that a lot of Lyme disease groups and patients and advocates are clamoring for the need for standardized treatment.
“We need to revise the treatment  guidelines, we need something where at least when Joe Schmo comes to the doctor and is diagnosed with Lyme disease that there is at least some steps there that everybody can count on, that will happen, that will be covered, that will be done. And it’s slowly happening.”
It won’t likely happen over night. 
“I think that’s where advocates like myself and Paula (Jackson Jones) feel like that’s kind of our job right now, to help people to know the resources and avenues to get those other steps done to the best of our their ability, with the resources they have, and to kind of figure it out,” she said. “It’s a bit like a labyrinth.”
Angèle been a part of a number of online Lyme disease support groups, and with two monthly support groups in Wiscasset and Rockport through the Midcoast Lyme Disease Support and Education group, and it’s May 2 conference, she hopes to help others to find a path that will allow them to get to the point where they too can say, “Lyme disease is a part of my life, but I don’t want it to be my whole life.”
dmadore@timesrecord.com

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Coping through Poetry

By Angèle Rice, on her blog: www.overcominglyme.blogspot.com/

By Now

By Angèle Rice
Posted Feb. 12, 2015, on her blog: 
www.overcominglyme.blogspot.com/

By now I was suppose to be a mom of 3 kids,
by now I was suppose to be healthy,
by now I was suppose to be able to move mountains.
My dark encased eyes,
shaking hands,
and foggy brained moments
are all I have left
 of the dreams I once had
By now I was suppose to have a masters degree
by now I was suppose to have a second car
by now I was suppose to have a career
Everyday is guess
Can I get out of bed?
Where did I put my car keys?
I have no energy at all
I can’ t focus anymore
By now I was suppose to have lots of friends
by now I was suppose to be able to travel long distances
by now I was suppose to be able to try anything physical I wanted to
When did my life become an odd session of compromises
If I do this, how horrible will I feel later
If I take this herbal/medicine how horrible will I feel until I start to feel better
If I go do something I enjoy, I pay
If I take my medicine, I pay
If I don’t take my medicine, I pay
when can I get off this merry go round
When can I stop wondering when the other shoe will fall everyday
when do I get my life back
what is normal
By now I was suppose to plan my day around my interests, not my body
by now I was suppose to learn to play guitar not ration my precious energy
by now I was suppose do something worth meaning because just breathing is not enough anymore
when does this end? 

The Mystery of Life

By Angèle Rice
Posted Sept. 23, 2011, on her blog: 
www.overcominglyme.blogspot.com/

Don’t underestimate misery’s blade,
It can teach you to stand,
On one leg.
Don’t underestimate disappointment’s sting,
It can teach you to hope,
With half a wing.
Don’t underestimate grief’s torment,
It can teach you to be joyous,
When nothing is left.
Define your life with what you have left,
Not what you have lost.

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