Symptoms

I find it useful to review other people’s list of symptoms of Chronic Lyme Disease, so I am going to return the favor. I have had Lyme for decades and it has morphed into different manifestations along the way.  This will take me a long time to remember, list and look up spelling. I am going to list them in the order they appeared:

 

  • high fevers
  • febrile seizures
  • stitches in sides
  • fainting
  • chronic bronchitis
  • dry hair
  • thin nails
  • painful breasts
  • heavy , painful and erratic menstruals
  • fluorescent light intolerance
  • headaches
  • migraines
  • temporary blindness
  • IBS
  • severe knee pain when I run or in snow
  • emergency surgery – ovarian cyst removal, ovary burst, appendix infected, pelvic lining was infected
  • pain at the balls of my feet
  • loss of grip strength
  • vertigo
  • loss of endurance
  • waves of anxiety
  • panic attacks
  • suicide ideation
  • polycystic syndrome
  • Stage III cervical dysplasia (2x)
  • endometriosis – surgery
  • multiple early stage miscarriages
  • one miscarriage at 16 weeks
  • pelvic infection
  • high risk pregnancies
  • early hard labor
  • post partum depression
  • depression
  • insomnia
  • itching on my arms – so severe I can’t sleep
  • roving pain in all my joints
  • pressure points of pain
  • Epstein Barr Virus
  • mono
  • multiple bladder infections
  • severe kidney infections
  • BV
  • candida
  • food allergy to wheat/gluten
  • food allergy to shellfish
  • allergy to all living plants particularly pine trees
  • asthma
  • cold feet and cold hands
  • temperature dis-regulation
  • stiff neck
  • stiff shoulders
  • lower back pain
  • tissue pain
  • hyperthroidism
  • hypothryoidism
  • nodules on right thryoid
  • early premenopause at 36
  • early menopause at 46
  • early post menopause at 50
  • going gray at 38
  • periodic severe left chest pains
  • labs showed positive for RA, then several years later they did not
  • labs showed positive high speckled ANA titer (Lupus, MS, Sjogren’s) then several years later they did not
  • diffuse T2 focal flairs
  • one lima bean size focal flair by basal ganglia
  • episodic atrial fibrillation
  • episodic high blood pressure
  • extremely low blood pressure
  • toe fold over toes with no pain
  • episodic total numbness/paralisis entire arm
  • floaters in eyes
  • feeling faint and seeing shapes when doing cardio
  • tachycardia
  • dry cough
  • stays in hospitals for heart events
  • pneumonia
  • malaise
  • extreme fatigue
  • low grade fevers
  • seizure like activity
  • twitches
  • partial facial paralisis
  • muscle fasciculations
  • memory problems
  • dysarthia
  • dysphagia
  • trouble with syntax in writing and speech
  • trouble remembering spelling
  • sound salad
  • voice weakness
  • breathlessness
  • short of breath
  • jaw pain/stiffness
  • teeth pain
  • ringing in ears
  • lightheadedness
  • collapsing
  • balance problems
  • blurry eyes
  • allergy to alcohol
  • episodic lapses of vision
  • trouble with fine motor control
  • dropping things
  • arms and legs go numb
  • fingers go numb, toes go numb
  • sharp stabbing headaches
  • trouble with executive functioning
  • cognitive impairment
  • episodic brief hearing impairment/loss
  • trouble responding to a double question
  • trouble with multi-tasking (I use to be multitasking queen)
  • trouble reading (I use to be a speed reader)
  • pain and pressure in my head trying concentrate on a conversation that is over two minutes – I almost pass out
  • vivid dreams

main window view at cavallo point b&w

 

 

 

 

 

That is enough for now.

I will add things when I remember them. 😉

 

 

 

The critical nature of B12

OLYMPUS DIGITAL CAMERAMost of us have neurological and digestive symptoms. Borrelia, babesia, and various TBD can cause those symptoms. MS, ALS, and other diseases can cause similar symptoms – that is widely known. As so often people with LD, I had to go down that path to rule out every other diseases and they just gave up.

Along with the correct diagnosis for TBD, my doctor told me to get my DNA tested (23andme.com) and run it through geneticgenie.com (free). There they run your DNA to find mutations. I found out that I have certain mutations that prevent proper absorption of B12.

I found this documentary on a lyme forum. It has opened up a new world for me. Vitamin B12 is so critical for our brains, nervous system, cardio system, motor neuron system, etc. Serious B12 deficiency is a death sentence. So often it is mis-diagnosed as Frontal Lobe Dementia, Alzheimer’s, Parkinson’s, Lewy (sp?) Body Dementia, ALS, Autism, Psychosis, and MS. A lot of people are at risk for deficiency of B12. So many factors could make us in danger of deficiency. Primarily  autoimmune diseases, vegan, vegetarian diet, Folic Acid (B6), anti-acid meds. It can run in families. The standard tests, like the Lyme standard test, miss most of the deficiencies cases.

What does this mean for Lymies? Watch the video, and see how many symptoms over lap our symptoms.

 

End of March – “nothing in my noggin”

OLYMPUS DIGITAL CAMERA

Today I have to take advantage of my somewhat cognitive clearness. It is a rare thing. I have so much that I want to communicate but I don’t have energy to think let alone type. It normally hurts my brain to listen to another person, and it is struggle to respond. To concentrate today is to manage my low energy , the pressure in my brain, and my blurry eyes. I will push through. So I celebrate days like this one.

It is has been over a month since I last received IV treatment. First the head pharmacist at Sutter Roseville would not give me the proper dose (4 grams) of Rocephin that the head Infectious Disease specialist at Sutter Roseville said I needed. So I went everyday 7 days a week for 90 days to receive 2grams of Rocephin with benadryl. Aetna paid for that, after my deductible of 3,500. I progressed somewhat, in other ways I did not show enough progress, and other ways the disease was advancing. My LLMD doctor wanted to increase the dosage of Rocephin and add in Azithromycin, Flagyl.

Sutter Roseville was the only medical center that was willing to treat me initially. Sutter Roseville changed my LLLMD diagnosis from bacterial infection and encephalopathy, to Lyme Disease after treating me for 90 days for the correct diagnosis. Now Sutter Roseville follows the corrupt CDC guidelines for treating LD, they refused to treat me any further, despite Aetna is willing to cover in hospital treatment. Aetna won’t cover at home treatment. Now I have to join the legions of people with LD by paying out pocket to self administer IV treatments at home. Meanwhile I am slipping backwards.

marin headlands2 I saw my LLMD last Thursday in San Francisco. Josh went with me and we had great conversation. Stick a teenager in a car for a long road trip…

The office is quite unorganized and tiny. But all the people that work there have long hours. I have to stay on top them every time. Including the doctor. She is a genius, devoted to treatment Lyme Disease, devoted to ILADS, and she gives her time freely. She is the one doctor that did forensics on my entire medical history from my entire life. She devoted one weekend to read my history before I came in too see her for the first time. The first time I saw her she said, ” All your other doctors have let you down.” She is the little tiny mighty woman and she has the credentials. I consider her a hero and a warrior.

photo-8Remembering to follow the doctors orders is another thing. For that I am responsible. It is so hard to implement strategy when I am not able to concentrate. I try to come up with solutions for me to help myself, and for somebody to help me; but I have to spend energy and thought to communicate. It is a struggle to remember my schedule when I am so often timeless.

It is so difficult to get people up to speed on Lyme Disease. Mom flies out here to help for a few days but she has a busy life.  I have Argelia to take of the house, to shop, to pick up meds; I don’t what I would do without her (and Mom).

Still, I am the brains behind my care. It is hard. It is like trying to navigate when scuba diving in the Monterrey Bay when the algae count is high and swimming amongst the kelp forest. Call me Dori!

 

 

 

Dr Alan B MacDonald

manasquan twilight6

” Patients don’t fail therapy – therapy fails patients.”

“(the CDC guidelines) are kindergarten medicine for treatment for Lyme Disease…”

Dr MacDonald is one of the Lyme heroes. He has been researching Lyme since the 1970s. He uses the syphilis model to explain what Borrelias can do. He has been studying on his own time in his basement the links to spirochete to cysts to biofilms. He has also been researching the link to Alzheimer’s and now to some cases of ALS. He was featured in Under Our Skin. He also has been working with Dr. Eva Sapi (another Lyme hero). Good starting point to get to know him is on his website. He has many links to his research and studies. http://alzheimerborreliosis.net

There are three brilliant videos on YouTube that Dr MacDonald explains his work:

Part I

Part II Part III

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 54 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. 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.

Fogo Island

Fogo Island

Sure they tested me for Lyme disease using one test. Over and over again it showed up incomplete. 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. I am happy to say that they are flourishing. Arielle was on the deans list at AU, and Josh was graduation  CU in Boulder. Arielle’s owner wedding planning summercoevents.com. Arielle was married Nick in October 2018. Arielle’s new first home in Maryland. Josh first job Underwriting Analyst in Nexus Commercial Realty, LLC in Denver. My grandpuppy Carter Australian Terrier I love him. Carter’s daddy Josh.

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 2013 I was seen by a ALS specialist. I didn’t have ALS. Sutter Hospitals neurologist diagnosed me with PPAOS (Primary Progressive Apraxia of Speech). For which there is no treatment. I would have lost my voice entirely, 154 IQ 2002, 95 IQ 2013, my reading ability, and mild Parkinson’s and die. That didn’t explain the physical symptoms. Slow death.

By October 2013 I was rushed to hospital for a heart event. Possible TIAs. There was another hospital stay for the same thing in February 2014. 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, EBV and Fifths Disease (a virus).

339_38527430519_8067_n copyMy friend Karen has hung in there with me. When I am around her I feel her happy loving energy running through me.

My 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. My gallbladder was removed. I am a no sugar, no gluten, no dairy, healthy fats, ancient grains, veggies, berries, nuts diet. I taked lots of supplements, essential oils, probiotics. I started Stephen Buhner’s protocol. I went to Peru in 2016 wheelchair. Two months in Andes walking. 30 lbs low – Kambo, Wachuma, Ayahuasca, body energy,  stress life free, world healing masters, healing journey. Four months May -August. Pisac Sacred Valley. Rachel rescued poor puppy. Danu – Celtic Fairy goddess.  I was Danu USA. I was foster her. Unfortunately October 2016 Granite Bay California feral kitten bitten left hand rescued the road.  Acute Bartonella red swollen hand. Six months bedridden. I was working a master herbalist/acupuncturist in Nevada City energy health.  Divorced second ex-husband Scott four years married. I moved from California to New Jersey November 2017. I joined my mom and family. Bedridden, heart problems (bradycardia, tachycardia), I trouble swallowing liquid and pills, I trouble handwriting, I trouble facial expressions- no smile, unbalanced, mild Parkinson’s, loss weight 109lb.

My Eli - RIP

My Eli – RIP

My days were spent on the couch with my doggies. My golden retriever Samson and Matshi mix Delilah. 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. Somerville pretty small town. My neighborhood safety friendly. My neighbors book club – six persons. My friend/ neighbor Mary death June 2019 pancreatic cancer. Her husband and two daughters is grievance. I miss her.

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 couldn’t speak one word. I have trouble facial expressions. I can’t bare the look on people faces. Many people thinking I rude and angry. 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…

CDC and the Western Blot

mercyThis about DNA testing for Lyme:

“the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.”

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