My story

cypress arbor caroline

This journey has been going on for over twenty years. Even before that the disease showed signs that were mysterious. I have been infected multiple times starting when I was a child. I am going to tell you my Lyme story. Pardon if a word is missing or is spelled wrong – that is my Lyme brain. I used to have the ability to write fluently and accurately. I am stepping off a cliff to see if I can fly by writing my story.

Caroline and Dad

Caroline and Dad

I was born in California. Nature was my wonderland. Thanks to my parents, I had a need to explore the bend in the path. My grandparents took me in a camper all over the Western states from age four to thirteen. Such magical moments, such joyous memories of old growth forests and endless desserts. My parents split, and at ten years old, I was on both coasts. New horizons opened up; New York City, Canada, Newfoundland, the East Coasts states.

I suspect I was first infected in Santa Ynez Valley while we were visiting friends that lived on a ranch. My dad was there to hunt ducks and quail. I spent my time running around the barn, and the creek with the other kids. I remember a small tick on my forehead, and my dad put a lit match on it so it would crawl out. The plan didn’t work and my dad had to yank it out.

Santa Barbara was home. My best friend Lindy and I couldn’t resist a tree to climb up (we are still friends 48 years later). We shared a silent communication. We walked along paths in the mountains, running down the same paths. Collecting lizards and tad poles. And ticks. Into high school we hiked the same paths into the mountains to falls and pools where we could see out over the ocean to the Channel Islands.

Turpin's Trail, Fogo Island

Turpin’s Trail, Fogo Island

manasquan twilight9Part of the summers were spent on the East Coast – New Jersey, New England, Canada and Newfoundland. Bicycling down gravel roads to rivers; laying down on the grassy banks. Exploring forests with friends. The white tail deer danced through the open meadows. Prime tick season and locale.

I had periodically high fevers throughout my childhood. I had chronic bronchitis and strep throat. I remember walking to school in a daze and coughing like a seal because my stepmother deemed I was well enough to go to school. No one took me to the doctor.

Sports – I was up for anything. Waterskiing, skiing, ocean swimming, riding horses. I was always athletic but not a shining star on the field, the gym, nor in the pool; I liked that way. I intentionally came in second. In high school I ran track – the mile and the two mile. In college I ran distance for fun, and I started having trouble with my knees to the point that I couldn’t run anymore. So I took up road biking.

S1990tudio art was my major, and design was my bread and butter. I put myself through college with almost no debt. I worked as a waitress, an art director for the school newspaper, and a bookkeeper. After graduation I moved to San Francisco with the ambition to become an art director. I would relax by climbing to Sutro Towers from Noe Valley or riding my bike to the Marin Headlands. I had a few raging fevers that lasted for a week to three weeks. I started getting pain in my balls of my feet. I achieved my goal of becoming an art director for a major retail chain.

caroline at wedding 1990Then I moved to Marin, got married, and started getting pregnant with multiple miscarriages. I was still strong – we mountain biked up Mt Tam every weekend, we waterskied, we snow skied, we scuba dived, and I hiked along the Miwok trail. I finally got the first trimester with my daughter with complications. The second trimester was a breeze, the third not so much. I was put on bed rest because I was going into hard labor at 26 weeks. I was so exhausted it wasn’t difficult to stay in bed. I managed to keep her inside of me until the 37th week.

Arielle was a beautiful baby – petite, alert and loving. But she was very sensitive and needed to be held constantly. I suffered from post partum depression – back then it wasn’t recognized as a real thing. I had trouble getting back to my routine – I was so exhausted. We wanted a second baby as soon as possible. Multiple miscarriages happened again for three years.

arielle in donner lake

arielle in donner lake

I took Arielle to New Jersey when she was 18 months old during the summertime. My mother and I took a walk in a field. My mother came down with Lyme disease – fortunately she was on the East Coast. They treated her quickly. I didn’t even consider that I might have it too. When Arielle turned two, my favorite uncle passed away from cancer. At the time I was three months pregnant. The baby died at four months – I had to go through full labor. I was never the same after that.

caroline and josh fogo island

caroline and josh fogo island

I tried to hide my illness from my family and my friends. I got up in the morning to attend to Arielle and I was back in bed by ten. I was running low grade fevers. Arielle was such a sweet angel – she played beside me and I read her stories. By four I sprang out of bed, cleaned the house, and made dinner for fear that my husband would think bad of me. Three months into this my feet were to painful to walk normally, my elbows hurt when I drove, and my hands were shaking. I saw a doctor, and she said I was depressed without taking any labs. Of course I was depressed about being sick! I saw a rheumatologist and she diagnosed me with RA, Sjogrens and fibromylgia despite the labs didn’t show any evidence that I had RA or Sjogrens.

The best thing I did was to work with a body worker to get over the immense fear of not knowing what was going on with me. I started to visualize again (a form of meditation). After a year of being terribly sick I started to get my life back.

Happy day! I was pregnant with my son – the same route as the pregnancy with my daughter. Josh was a handsome healthy heavy baby. He was not fat – he was solid. He was strong, alert and funny. I couldn’t believe such a tiny baby could have a sense of humor. As soon as my son was born I had a desire to have a third child. My doctor said no more children – he was relieved that both my children were safe and healthy. This time around I had no depression, but it was even harder to recover from the pregnancy.

josh bridgewater nj

josh bridgewater nj

I always tell my children that I kiss the air that they breathe.

When my son was nine months old, I went down to see a rheumatologist in LA who was treating RA with antibiotics. He had 15% success rate (maybe they were Lyme patients) but I wasn’t having progress on the RA medications. He told me that I had only fibromyalgia. I was so disappointed. I knew that I had something more serious than that.

OLYMPUS DIGITAL CAMERAI still tried to keep in shape. I worked with a trainer for two to six months and I collapsed. As soon I was able to get out of bed I went back to training. I tried Bikram yoga – I loved it. Finally after three years of doing it I couldn’t do it anymore. I substituted short hikes in the Sierras and walks with my dog to the lake. Eli, a golden retriever rescue dog, loved to swim and I swam along with him.

I tried to keep my friendships.I cancelled at the last minute too many times and I didn’t have the energy to even call the doctor let alone friends. One by one friendships withered away.

The years went on. Doctor after doctor, labs after labs. Labs showed different things – one time I had RA, one time I had Lupus, and on and on. Doctors were suggesting that I was crazy. You know that look, when they are not taking you seriously. I was having left chest pains – they did nothing. I was hospitalized because I was going numb to the point that I stopped breathing and the labs showed nothing. They sent a psychology intern to see me. Doctors prescribed me antidepressants and when those didn’t work they prescribed me medications for bipolar disorder (despite no manic episodes). Those made me almost catatonic. Clearly I wasn’t bipolar.

Fogo Island

Fogo Island

Sure they tested me for Lyme disease using one test. Over and over again it showed up negative. No doctor was diagnosing me clinically. I finally gave up. I had a SPECT scan of my brain because I got a concussion and I was noticing that I had memory problems. The SPECT showed diffuse little white dots. And an MRI scan showed the same thing. They said that it may be toxins, and it may be MS.

I continually adapted my life to my ever diminishing abilities. I had to quite art directing to get pregnant. I opened a daycare/preschool between my kids. When I got pregnant with Josh I had to stop that too. I helped my husband in his ventures by doing product design, set design, hair and makeup, writing and editing. I also went back to school to learn interior design. I was involved in remodels and new builds. Until I couldn’t do that anymore.

Sand Shark….

Sand Shark….

My children are very bright but they have processing disorders. My daughter is very sensitive to touch, taste and stimulation. My son had mild dyslexia, and he has trouble mastering math facts. I was very active in getting them help and I am happy to say that they are flourishing. Arielle is on the deans list at AU, and Josh is brilliant with science, history and media. It doesn’t make sense that they would have these difficulties – my ex-husband is very bright and he has no challenges and neither do I. There is no family history.

OLYMPUS DIGITAL CAMERAIt took a toll on my ability to parent. I was super mommy until I wasn’t able do it. And my husband was disgusted with me. When Arielle was seven and Josh was four, my world shattered. I found out about my husbands activities and it broke my reality. I tried for two years to keep my family together and it took a toll on my health. For months I couldn’t get of bed. I had asthma, I had bronchitis, I had pneumonia, I had mono. I realized that if I stayed in the marriage I was going to die.

Adjusting to single motherhood wasn’t easy. I had terrible guilt for my children, and they were going through difficulties adjusting to the divorce. I felt like I was separated from the world by a thin curtain. After an attempt at a full time job, and after a death of a close friend, Richard Carlson, I realized that I should go back to back to school and earn my MA in psychology. And I did.

The plan was to get my MA and get licensed as a MFT and start teaching. I loved to discuss things with the class and my professor said I should go for my PhD. I was constantly grateful for the privilege to be in school. My cohorts and I practiced our new therapy skills on each other. I discovered that I have a talent for art therapy and play therapy.

Image1During the second year of graduate school, I had a strange thing happen to me. I was sitting in class and we were having a group discussion. It was my turn to speak – the room turned gray and I was trying to get my words out. My classmates had a puzzled look on their faces. They reported that my words were soft spoken, slow and garbled. That was the first day that my ability to speak started to go.

champ

champ

I went to the doctor once again and he set up a four minute appointment with a neurologist. At that time, my voice faltered intermittently. She said there was nothing wrong with me. How about a stroke? You would think that they would have at least checked that. Then my COBRA ended and I went without insurance for two years.

After graduation I started interning at a private clinic. I was responsible for running women’s groups, and co-facilliting group presentations. A year into the internship I could no longer do the presentations because my voice wasn’t strong enough. I joined another private practice where I didn’t have to do groups and it provided insurance. I was looking forward to getting my license. The work was so fulfilling, I felt it was my calling. Increasingly I was sick; my voice was faltering. I felt lightheaded. My clients were so bonded to me, they didn’t mind that I had to repeat myself sometimes.

By September I was seen by a ALS specialist. I didn’t have ALS. UCSF diagnosed me with PNFA (Primary Non-Fluent Aphasia). That is subtype of Primary Progressive Aphasia. For which there is no treatment. I would have lost my voice entirely, my hearing, my reading ability, and go demented and die – over a short span of years; 2-7. That didn’t explain the physical symptoms.

By October I was rushed to hospital for a heart event. Possible TIAs. There was another hospital stay for the same thing in February. They did a full work up on my heart. My heart is structurally fine. The cardiologist looked at me in that way – you know the look. Now when my blood pressure plummets, I get pain in my left chest, arrhythmias, tachycardia, I don’t go to the ER.

They didn’t consider that my autonomic nervous system was under attack.  I had to retire as a therapist because I couldn’t communicate with my clients and I couldn’t drive reliably without a danger of another heart event. It was so hard to accept that. I questioned God – I thought I was serving him by being an instrument of healing.

Finally the angels directed me to a Lyme support group. That first meeting they gave us a LL doctor’s name that handles complicated cases of Lyme Disease. I went to San Francisco for my initial session and to get the special labs drawn. I stayed in the city for four days because that how long it took to draw the proper labs. Needless to say I am positive for Lyme Disease, Bartonella, Babesia, and Fifths Disease (a virus).  She started my on oral antibiotics and anitvirals because she didn’t want to send my body into shock starting off with IV. She confirmed I was infected multiple times.

339_38527430519_8067_n copyMy friend Karen has hung in there with me. I know I haven’t been the friend that she deserves but she loves me still. When I am around her I feel her happy loving energy running through me.

OLYMPUS DIGITAL CAMERAMy mother has been very supportive – exceedingly so. I don’t where I would be without her. It is so wonderful to have a parent that steps up and gets it. It truly makes me healthier with all the love around me.

I was sliding backwards. I hadn’t received IV treatment for a month at Sutter Roseville because Sutter changed my diagnosis from: bacteria infection,encephalopathy; to Lyme Disease. As Sutter follows the CDC corrupt guidelines; they refused to treat me. For some reason Sutter wouldn’t work with my LLMD.

I switched doctors to Gordon Medical Associates. And viola! I was back on IV through Sutter and it is home care! I don’t have to go to the hospital everyday where my chemical sensitivities are driven mad! My blood count was low. I switched from Rocephin to Cefotaxime IV. My gallbladder was removed. I noticed a slight bit of energy. I am a no sugar, no gluten, no dairy, healthy fats, ancient grains, veggies, berries, little organic meats, nuts diet. I taked lots of supplements, essential oils, probiotics. I am so excited – my doctor Dr Wayne Anderson!

My Eli - RIP

My Eli – RIP

My days were spent on the couch with my doggies.  Sometimes I couldn’t walk into the kitchen, and other days I could go out for one errand. On days like this my brain is soooo slow; it takes me time to figure out how to spell simple words and the proper syntax.

visby wall

visby wall

Most of the time I am peaceful, I have gone through grief, I have accepted what is. Sometimes I battle with the dialogue in my head that tells me I am lazy. I mostly numb out my body, and I have done that for years. When that voice starts rearing its ugly head, I tune into my body. I am always surprised how sick I am, and how much pain I am in. I am continually surprised when I open my mouth to speak I can’t form the words. Sometimes I am aware of how I sound, and sometimes I think I am speaking clearly. I can’t bare the look on people faces when they hear me speak. They are so shocked because I look relatively healthy. I am just glad I am breathing.

I contemplating starting a Lyme support group in my town because two other groups in my area are too far away, and one is at night. On my good days I think I can do it, today I doubt I can do it. The best thing about this blog is I am connecting with other Lyme Warriors in a safe way across the world.

I am hoping connect with people in a deep and meaningful way…

 

 

22 thoughts on “My story

  1. My sweet friend, I read your words with a heavy heart but also with clear hope for a healthier future for you. I remember well the multiple wrong diagnoses you received, the times I took you to urgent care, the many times you weren’t believed. You had such difficult days but then you’d seem to rally. We had wonderful times together and also challenging ones. Now we are miles away but you are always in my heart and it brings me great joy to know you are so happy with Scott. Though I can’t hear your voice I can still look at your photos and see my beautiful friend that now finally has found your love. Forever, Kim

    Liked by 1 person

    • Kim – I will always remember your loving care when I had nobody else. Remember that time when you coming over to get me to take me the doctors because Charlie refused to do it. He stepped over my collapsed body on the landing to let you in and he went back to bed. You took me to urgent care and they patched me up by giving me antibiotics for pneumonia. You are great friend!

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  2. My dear sweet Caroline..My nephew Scott is so lucky and proud to have such a beautiful
    and lovely lady for his wife…you have so many accomplishments that you have achieved with all your side effects from this disease and yet you continued to work hard inspite of the discomforts you experienced…anyone else would have given up…Thank God you found the right doctot to treat and discover this disease…May you recover and return to a healthy state in your sweet life…God bless you! We love you so much…Aunt Angie and Uncle Herb….xxoo

    Liked by 1 person

  3. Angie
    Thank you for your kind loving words. I have had moments that I had almost had given up – and my love for my kids brought me back. The diagnosis of ALS was truly a low point – my body just gave up. That diagnosis and the shock of facing death so soon – the disease process speeded up into overdrive. People die of ALS when they actually have untreated Lyme disease (about 15% of the ALS cases). When I met Scott I had another reason to live and get well. Scott has such a big loving heart, he loves me like I never been loved. I knew this love could exist but I was resigned to be never loved like this. He is my champion in this war.

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  4. to my darling daughter Caroline. I read this with tears in my eyes and sorrow in my heart, this poignant reminder of the ordeals you have suffered throughout your life. The beauty of your soul shines in this blog and in every moment I see you, though, and that is the basis for hope. I love you, Mom

    Liked by 1 person

    • Mom – I wouldn’t know where I would be without you. You have always been my savior, my guiding light. You gave me reason to survive, live before I had my children. I don’t feel alone anymore with your support of my journey back to wellness. Love

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  5. Caroline, I have heard about your journey through your mom and my heart hurt every time she told me about what you were enduring. Sickness is bad enough but not knowing what you are fighting and to have people look at you as if you are crazy would make even the strongest person break down. You have been through so much and yet raised two beautiful kids and never stopped trying to get better. It just shows what a strong spirit you have. I hope that the treatment works and your body and mind find some peace at last.

    Liked by 1 person

  6. Pingback: My story | lyme lifescapes with caroline

  7. Dear Caroline, myself and my daughter, Kathleen, met you in Tilting at the home my son Allan Dwyer. We all met because your daughter, Arielle, made friends with my granddaughter, Kathrine,(Katie). Your story tore me apart. However, you seem to have stayed very positive with the ongoing struggles you have encountered. My daughter, Kathleen is in much of the same position as yourself only with a different enemy. stage four cancer which she has been fighting for eleven years but it is now getting the upper hand and chemo and all the medication she takes isn’t always working the way it should. But like you she is always positive. She has mentioned you from time to time, you really impressed her. Katie, her daughter had a break down to the point where she was suicidal. She is doing well now and still goes to therapy at CAMH in Toronto and has a job . We will certainly add you to the list of folks we pray for and I will relate your story to her. Myself and my husband Peter Dwyer, knew your mother, Bonnie, years ago she was very good friends with Joe Dwyer in Tilting. I found Bonnie on Facebook.

    Liked by 1 person

    • Hi Gwen
      Of course I remember you, and Kathleen and Katie! Thank you for taking the time out to read my story. Thank you for your heartfelt words. Thank you for praying for me – prayer works! Kathy impressed me too – kindred spirits. Miracle of miracles – Kathy is getting better! I am glad Kate has made it to other side of her troubles.
      Arielle is in her senior year at American University in Washington DC. Josh is a junior in high school.
      I hope to make it back to Fogo if not this year, next year. When I do, I will visit you if you are on the island.
      Best,
      Caroline

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  8. Sending you love and prayer from PA! I struggled for 9 years with no diagnosis and my story is almost a mirror to yours!! I know and understand your struggle!

    Liked by 1 person

  9. Pingback: TOUCHED BY LYME: When Lyme disease steals your voice—literallyLymeDisease.org

  10. Dear Caroline,

    For two years my life has been only going down. I have been to many doctors, Mayo Clinic, I cannot say how many diagnosis I got.
    I was lucky to meet this woman 15 days who told me to get tested in a private lab in Palo Alto. I got the results yesterday. My story is so similar to yours. I was doing my MFT and I had to stop because I am not being able to speak properly. I am so hopeless but receiving this new results is giving me hope to fight again.
    I would like to know if you are being treated in San Francisco, if you have a doctor you can recommend that treats this disease outside of the CDC guidelines. Because I am aware that 4 weeks of antibiotics is not going to resolve a long-term of this disease.

    Any help, I would appreciate

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    • Dear Karine,
      I’m so sorry to get back to this late. My doctor has been Dr. Christine Green, MD. She is involved with ILADS, and she has been published by peer reviewed journals. She is a genius. Her office is a little disorganized. I am still under her care, but I recently saw Dr. Elizabeth Large, NP at Gordon Medical Group in Santa Rosa. I was recommended to that group by so many people. It is fantastic! They are a truly integrative group – they helped me right away to instruct me how to do home infusion with antibiotics, and they sent me home with supplies and supplements.
      Both Dr. Christine Green and the doctors at Gordon Medical Group will test you with other tests. But it is overwhelming to start out with Dr. Green because her office is not set up to make it easy. So I recommend you start with Dr. Large at Gordon Medical Group.
      Are you on Facebook? Look me up – Caroline Trujillo. I will private message you some more information.
      I know your pain – it is like looking in a mirror.
      Best
      Caroline

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    • Dear Karine
      I want to touch base with you. How did the testing turn out with Igenex? Did you connect with a LLMD? How are you feeling? I requested you as a friend on Facebook and I sent you a message. I haven’t heard from you. I know how hard is at times to have enough energy and concentration to respond. Just know that I am thinking about you…
      Best
      Caroline

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  11. Caroline – Thank you for sharing your courageous story and Happy New Year – I hope 2015 brings you lots of love, HEALTH and happiness (and its your best one yet). Our stories have a handful of similarities – both sick for a long time before being correctly diagnoses.. what a journey! I live in Marin and am am fond of and aware of your doctors and steps you have taken. I’ve started a new protocol and although have a ways to go am very solid functioning now (yay!) and having better and better days each month. Happy to share if you are open to communicating. Believe me –> so many avenues can be overwhelming . Best, to you Debra (Facebook -> Debra Gluskin )

    Liked by 1 person

    • Debra – Thank you for the well wishes – same to you! I would like to know your promising protocol. I would like to meet you in Marin next time I am there. I will friend you on FB. Much love – Caroline

      Like

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    Liked by 1 person

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